Plain language summary – The Publication Plan for everyone interested in medical writing, the development of medical publications, and publication planning https://thepublicationplan.com A central online news resource for professionals involved in the development of medical publications and involved in publication planning and medical writing. Wed, 27 Aug 2025 14:34:43 +0000 en-US hourly 1 https://s0.wp.com/i/webclip.png Plain language summary – The Publication Plan for everyone interested in medical writing, the development of medical publications, and publication planning https://thepublicationplan.com 32 32 88258571 Publication extenders: the key to more impactful research? https://thepublicationplan.com/2025/08/27/publication-extenders-the-key-to-more-impactful-research/ https://thepublicationplan.com/2025/08/27/publication-extenders-the-key-to-more-impactful-research/#respond Wed, 27 Aug 2025 14:34:41 +0000 https://thepublicationplan.com/?p=18259

KEY TAKEAWAYS

  • Publication extenders make articles more accessible, increase citations, and aid reader comprehension.
  • Lack of adoption by publishers or and difficulty finding publication extenders on journal platforms highlights opportunities for improvements.

Publication extenders, such as plain-language summaries (PLSs), infographics, and video abstracts, have become incredibly useful tools for reaching a wider audience, enhancing the impact of research. Yet evidence supporting their use has not been readily available. To address this, the International Society for Medical Publication Professionals (ISMPP) Digital/Visual Communications Committee developed the Publication Extenders Evidence Resource. In an article published in The MAP Newsletter, Kelly Soldavin and colleagues discuss key findings, demonstrating the value of publication extenders.

Publication extenders improve article metrics

Publication extenders can lead to increased downloads, Altmetric scores, and citations. The authors point to studies that found:

  • Articles with video abstracts had a 1.206 higher citation rate than those without.
  • 62% of articles with a text-based PLS were downloaded significantly more than similar articles without PLSs.

Audience preferences for publication extenders vary

The authors highlight several studies assessing the format of publication extenders preferred by different groups. Patients report that publication extenders, and specifically PLSs with plain text and infographics, make articles easier to understand. On the other hand, some health care professionals prefer plain-text PLSs over graphical formats.

Uptake of publication extenders could be improved

“While the benefits of publication extenders are clear, uptake by authors and journals is low.”

While the benefits of publication extenders are clear, uptake by authors and journals is generally low: one study found only 11 of 30 haematology journals allowed PLSs. Even when publication extenders are used, they are often difficult to find on journal platforms.

Looking to the future

The authors conclude that research consistently shows publication extenders enhance the impact of research, making it more accessible across a wide audience. Publishers should consider ways to make publication extenders more discoverable, while authors and publication planning professionals should consider platforms other than those offered by journals to improve the accessibility of digital content.

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Do you think journals should prioritise the use of publication extenders?

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Why aren’t more journals publishing plain language summaries? https://thepublicationplan.com/2025/05/08/why-arent-more-journals-publishing-plain-language-summaries/ https://thepublicationplan.com/2025/05/08/why-arent-more-journals-publishing-plain-language-summaries/#respond Thu, 08 May 2025 16:36:17 +0000 https://thepublicationplan.com/?p=17720

KEY TAKEAWAYS

  • Most journals surveyed do not allow authors to submit PLS, often citing a perceived lack of demand from readers or authors.
  • Existing PLS practices are inconsistent in format, peer review processes, and indexing methods.

Plain language summaries (PLS) have the power to unlock science for everyone – so why are they still missing from many medical journals? A recent article by Slávka Baróniková and colleagues, published in European Medical Writers Association (EMWA)’s journal Medical Writing, presents the results of a survey conducted by Open Pharma in 2022–2023. The survey explored how journal editors and publishers view the role of PLS in scientific publishing and whether current practices align with Open Pharma’s recommendations for clear and accessible research communication.

73% of journals surveyed did not allow author-submitted PLS, citing reasons such as a perceived lack of reader or author demand, lack of relevance to journal content, and insufficient resources.

The 16-question survey gathered responses from 29 individuals across 26 individual journals and 7 publisher portfolios. Here are the main findings:

  • Most journals do not support PLS submission: 73% of journals surveyed did not allow author-submitted PLS.
  • PLS practices are inconsistent: Among journals that did accept PLS, formats, placement, peer review, and indexing practices varied widely.
  • Peer review and discoverability are limited: Fewer than half of the journals that published PLS peer reviewed them or used appropriate PubMed metatags. Only one journal reported consistent use of the PLS metatag, which is crucial for indexing.
  • Perceived barriers include lack of demand: Common reasons for not accepting PLS included a perceived lack of reader or author demand, lack of relevance to journal content, and insufficient resources.
  • Most journals recognise the potential for PLS to increase readership: Patients, healthcare professionals, and students were seen as key audiences for PLS.

Despite progress by some publishers, the survey highlights an ongoing need for greater standardisation, more consistent peer review, and improved visibility of PLS. It also revealed that some respondents were unsure of their own journal’s PLS policies, underscoring the need for better internal communication and training.

The authors urge journals to adopt Open Pharma’s recommendations and strengthen their PLS policies to ensure that PLS are accessible, discoverable, and scientifically accurate.

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What do you think – should plain language summaries be peer reviewed?

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‘Hiding in plain sight?’ How can publishers improve patient engagement with PLSPs? https://thepublicationplan.com/2024/08/08/hiding-in-plain-sight-how-can-publishers-improve-patient-engagement-with-plsps/ https://thepublicationplan.com/2024/08/08/hiding-in-plain-sight-how-can-publishers-improve-patient-engagement-with-plsps/#respond Thu, 08 Aug 2024 07:59:12 +0000 https://thepublicationplan.com/?p=16261

KEY TAKEAWAYS 

  • Publishers should refine the development and distribution of plain language summaries of publication (PLSPs) to increase discoverability and accessibility for patients, thus increasing engagement.
  • Involving patients in PLSP writing and peer review could increase awareness of PLSPs and improve their reach.

For patients seeking to understand their medical condition, deciphering complex scientific articles can feel like trying to read another language. To bridge this gap between ‘technical jargon’ and the needs of patients and the public, multiple publishers now offer plain language summaries of publication (PLSPs)standalone peer reviewed articles that ‘translate’ a scientific paper for the non-specialist audience. However, PLSPs are only useful if they are read. In a recent article for the European Medical Writers Association (EMWA)’s Medical Writing journal, authors from publisher Taylor & Francis looked at the current level of patient engagement with PLSPs and what could be done to increase this.

How discoverable are PLSPs?

There are inherent challenges in trying to ensure that PLSPs are discoverable and accessible to patients, given that they are published in journals usually only read by expert audiences. For instance, the authors highlighted the following findings from a 2023 survey:

  • Most patients discover PLSPs via Google (41%) vs PubMed (12%).
  • Fear of misinformation means patients tend to trust personal recommendations or social media: 30% of patients find PLSPs via these routes.

In this context, it can be difficult for patients to even be aware of PLSPs. The authors suggest that publishers could make PLSPs more accessible and discoverable, and thus increase patient engagement, by:

  • improving search engine optimisation (SEO) of PLSPs for traditional search engines, like Google
  • distributing PLSPs to patient advocacy groups
  • clearly providing multi-language translations of PLSPs to reach global patient audiences.

Integrate patients in PLSP development

Importantly, publishers can include patients in the process of PLSP development by:

  • inviting patients to act as authors of PLSPs
  • involving patients and caregivers in the peer review process.

This approach is supported by publishers and patients alike. As the publication of PLSPs grows in popularity, it is important that publishers nurture patient engagement at every stage of PLSP development.

As the publication of PLSPs grows in popularity, it is important that publishers nurture patient engagement at every stage of PLSP development.

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What do you think is the best way to increase patient engagement with PLSPs?

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Meeting report: summary of Day 2 of the 2024 ISMPP European Meeting https://thepublicationplan.com/2024/02/09/meeting-report-summary-of-day-2-of-the-2024-ismpp-european-meeting/ https://thepublicationplan.com/2024/02/09/meeting-report-summary-of-day-2-of-the-2024-ismpp-european-meeting/#respond Fri, 09 Feb 2024 13:54:40 +0000 https://thepublicationplan.com/?p=15207

The 2024 European Meeting of the International Society for Medical Publication Professionals (ISMPP) was held in London on 23–24 January. The meeting, which was themed ‘Innovation: The New Tradition’, saw a record 395  delegates in attendance.

A summary of the second day of the meeting is provided below to benefit those who were unable to attend the meeting, and as a timely reminder of the key topics covered for those who did.

A summary of the first day of the meeting can be found here.

Summaries of Day 2

Day 2 opened with parallel sessions, with attendees each having the opportunity to select 2 sessions to attend.

Parallel session: From blue sky to bottom line: getting innovation off the ground


KEY TAKEAWAY

  • When working on innovative projects, it is important to plan ahead, consider longer term budget and time implications, establish a target audience early, and ensure there is effective communication between multidisciplinary team members.

In the first session of Day 2, Andrew Xia (Takeda) and Petrina Stevens (AstraZeneca) shared experiences from recent innovative projects they were involved in.

The use of AI methods

Xia described a collaborative project between Takeda and the Massachusetts Institute of Technology (MIT) aiming to automate systematic literature reviews using artificial intelligence (AI) to speed up the process and reduce human errors.

Developing innovative processes is highly labour intensive and requires high levels of expertise.

They evaluated 2 different large language models (LLMs): BiLSTM and BERT, and assessed the performance of each model by calculating F1 scores (a dual measure of precision and recall). Two different systematic literature review projects were used to test the models, with the main goals being to correctly identify entities (eg, drug names) and their relations within the text. The pre-trained BERT model with a Conditional Random Field (CRF) had the highest F1 score and was particularly good at identifying entities such as age, but not as good at identifying less standardised entities such as treatment arm dosages.

Xia concluded that, with refinement, machine learning could be used to assist with human extraction of data from scientific literature, reducing the workload and timeframe for systematic literature reviews. However, performance varied between different entities, and Xia emphasised that we cannot currently rely upon AI without human input.

Reflecting on the challenges of developing innovative solutions, Xia noted the process was highly labour intensive and required a high level of expertise to complete. Early alignment on a target audience was important when collaborating with a multidisciplinary team, as was regular communication. Xia also noted the need to consider the budget implications associated with these tools over a period of several years.

The importance of patient engagement

In the next presentation, Petrina Stevens began by noting the landscape shift in engaging patients across drug development, driven by the need of regulators, payers, healthcare professionals (HCPs), and patients themselves to understand the patient experience.

The goal of patient-centric medical strategy is to learn from patients and caregivers to inform the science so that it can change lives.

Having assessed previous patient authored publications, AstraZeneca identified a clear need for a framework for patient involvement to address barriers including:

  • lack of a defined process
  • a perception of complexity
  • difficulty measuring impact
  • relevancy to projects.

AstraZeneca’s patient engagement and publications teams developed a Patient involvement in Publications (PiiP) framework providing detailed guidance and processes for partnering with patients. The framework also includes a resource toolkit to help identify the right publications for patient involvement and find the right patient authors and patient reviewers.

The 5 guiding principles of the PiiP framework are:

  • Plan early: it takes time to identify, contract, and conduct activities with patients
  • Remuneration: patient authors are not compensated, but patient reviewers may receive payment
  • Authorship criteria: patient authors must satisfy ICMJE authorship criteria
  • Data privacy: naming a patient author may (unwantedly) associate them with the condition or treatment
  • Global and local processes: the framework reflects global processes but should be widely applicable across the company

The framework has been integrated across AstraZeneca to help improve early patient involvement in publication planning processes, identify and work with patients, enhance patient communications, and support medical strategies. It has been accessed over 750 times by AstraZeneca employees since its launch in April 2023.

To ensure successful innovation, Stevens reiterated the importance of early planning and apportioning sufficient time and resources. As noted earlier by Xia, Stevens agreed that early alignment on key considerations – such as compliance and data privacy in the case of the PiiP framework – was important, requiring an awareness of the cross-functional contributions of all involved parties.

Parallel session: Stakeholder compensation for services in the evolving publications landscape


KEY TAKEAWAYS

  • It is important to have clear demarcation between voluntary unpaid authorship and compensated publication services.
  • While GPP 2022 suggests that salaried employees are not disqualified from authorship and reimbursement for time is permitted, several areas still need clarification.

In this parallel session, John Gonzalez (Solanum Medical Communications Ltd), Siobhan Southam (Mundipharma), and Veronica Porkess (UCB Pharma) discussed the challenges of navigating compensation in the evolving publications landscape. Gonzalez began by stating some key principles relating to authorship and compensation:

  • authorship is voluntary and unpaid
  • all authors should be treated equally
  • all authors should fulfil authorship criteria; there is no room for guest authorship
  • clear demarcation is required between authorship and compensated services
  • compensation should be reported to ensure transparency.

Publication advisory boards and steering committees

The first of 3 areas for discussion was compensation for participation on advisory boards and steering committees. Gonzalez reviewed guidance from the Prescription Medicines Code of Practice Authority (PMCPA) and the GPP 2022 guidelines, highlighting the challenges in separating compensation provided for expert advice from discussions around authorship and content, given many expert members would likely be study investigators with potential authorship eligibility. In the case of advisory boards, potential solutions to address this challenge included separation of publication authorship and content discussions, and proactive management of expectations relating to compensation, with clear distinction made between advisor and authorship roles. For steering committees, solutions included implementation of a publications steering committee charter, kick-off meetings to discuss publication content, and scheduling meetings for uncompensated activities virtually or at congresses to avoid transfer of value reporting/travel reimbursement.

Collaborations with patients

Southam then looked at the evolving area of patient collaboration, highlighting the recent change of guidance within GPP 2022.

“Salaried employees are not disqualified from authorship, reimbursement for time permitted, especially steering committee members, patients, patient advocates.” – GPP 2022 Guidelines

The divergent approaches taken by different companies in response to the GPP 2022 guidance on compensation of patients or patient advocates for publication-related activities was discussed, alongside concerns regarding the potential for any relationship between patients and pharma companies to be perceived as commercially motivated, as noted in the European Federation of Pharmaceutical Industries and Associations (EFPIA) guidance on working together with patient groups.

Drawing upon personal experience, Southam noted a general approach to reimburse patients if it would be appropriate for an HCP, and highlighted several key questions for further discussion:

  • How do we differentiate ‘publication activities’ from ‘authorship activities’?
  • Is all patient collaboration the same?
  • Are there risks associated with paying patients for authorship?
  • What compliance issues, codes, and regulations do we need to consider?

Vendors working on real world evidence publications

Finally, Porkess considered the complexities of compensation for vendor publication-related services, with specific reference to real world evidence publications. Using two fictional case studies, Porkess highlighted the GPP 2022 guidance on authorship and compensation for publication-related activities that states that paid employment in a role contributing to study conduct, analysis, or publication development does not disqualify a person from authorship. This led to a discussion on direct versus indirect payments and raised several questions, including:

  • How do we define payment for writing versus payment for authorship? What is the cut-off?
  • When does payment for writing become payment for authorship?

Summarising the discussion, Porkess considered when it might be appropriate for someone to receive payment for writing and also be an author of a publication:

  • Not appropriate: HCPs and scientists
  • Grey area: consultants, patients, patient advocates
  • Appropriate: pharma employees, medical writers, data analysts

Parallel session: Making an impact: what does success look like in publications?


KEY TAKEAWAY

  • Generative AI will change how we measure the success of a publication, with new tools able to accurately predict the impact of a manuscript before it is even written.

In this session, the success of publications was discussed from the publisher, pharma, and agency perspectives, with consideration of how AI has the potential to change these perspectives in coming years. Martin Delahunty (Inspiring STEM Consulting) started by defining success as a combined measure of engagement (or worthwhile interactions with people) and impact (or influence). He explained that impact can be measured on 3 different levels, with each of the current metrics having limitations:

  • journal: including Impact Factor, journal category rank, and CiteScore
  • article: including citations, social media mentions, page impressions, and downloads
  • author: including h-index, g-index, and i10-index

Delahunty went on to highlight that the Altmetric Attention Score now has a dashboard specific for pharma-sponsored publications, which incorporates a Dimensions database to provide a highly visual set of metrics. Meanwhile, PlumX Metrics, which has clinical, patent, and policy citation categories that help demonstrate the societal impact of a research output, now includes policy citations to journal articles from Overton. Delahunty ended by discussing the recommendation by the Declaration on Research Assessment (DORA) to move away from journal-based metrics such as Impact Factor and focus instead on a more diverse range of building blocks for impact. He gave a brief summary of the EMPIRE Index, a new metric framework for medical publications that provides social, scholarly, and societal weighting and may represent a more well-rounded impact score.

“(Success in publications) is a combined measure of engagement and impact.”

Anisha Mehra (Ferring Pharmaceuticals) explained that from the publications manager perspective, the holy grail of measuring publication impact is the number of insights that are used to inform medical strategy. To get to this point, there is a need to influence decision-making and outcomes by reaching the correct stakeholders.

Belinda Dean (Porterhouse Medical) said that agencies, being the middlemen between authors and clients, balance success of publications based on the priorities of both parties. Key factors for authors are journal selection, quality, and timelines. For clients, the metrics that measure success need to align with their business and strategic objectives. Agencies work to ensure that the needs of both sides are met, while also ensuring adherence to guidelines and timelines, a compelling narrative, high-quality writing, and client and author satisfaction (to secure repeat business). Of note, as each publication is different, with unique objectives, the measure of success needs to be adapted accordingly.

As each publication is different with unique objectives, the measure of success needs to be adapted accordingly.

Finally, Colin Baughman (JPA Health) talked about how the next generation of publication planning will leverage technology and AI. He suggested that AI and other modern technologies will change the paradigm in coming years, allowing us to not only predict a publication’s impact but also adjust factors to influence impact accordingly. He explained that while PlumX and altmetrics, the current standard for measuring impact, are useful, they are also reactive. Thus, the future of publications success will be to impact this in advance. Baughman provided a few broad examples of how generative AI and natural language processing will assist with the assessment of HCP knowledge, topic novelty, centrality, and aggregation of a high volume of traditional metrics. All of these tools combined will enable the prediction of impact. Baughman also pointed out that the future is not far away. For example, he believes that medical publications professionals will be widely using Google’s Med-PaLM – a medical domain LLM that has ‘passed’ the US Medical Licensing Examination – within the next 2 years.

Sprint activity: Reimagining the publication process to make it 2023 ready


KEY TAKEAWAY

  • Publications professionals should work together to identify opportunities for future improvements to the publications process and consider how these improvements can be implemented.

In the first of 3 collaborative, workshop-style sprint sessions, Simon Foulcer (AstraZeneca) and Helen Chambers (Costello Medical) steered participants through a 3-step exercise focused on revamping the publication process as we know it. Delegates worked in groups to tackle different areas of the publication process, from data mapping and planning, through to the final publication. Delegates firstly identified key areas of the publication process that pose challenges and are therefore ripe for innovation, before moving on to defining what excellence would look like in those areas, and what changes/innovations are needed to move towards this vision of excellence. The session was intended to act as a springboard for future discussions and innovation, in service of the long-term goal to move the medical publications industry forward and making it fit for 2030.

Sprint activity: Establishing best publication practices for pharma–non-pharma collaboration


KEY TAKEAWAY

  • Effective collaboration between pharma and non-pharma stakeholders is important for publication activities, and sharing experiences can help improve collaboration.

During this sprint session, Russell Craddock (Parexel), Ceinwen Giles (Shine Cancer Support), Alessandra Bittante (AstraZeneca), Jodi Cusack (Ipsen), Trishna Bharadia (Patient Engagement Champion & Health Advocate), and Jakki James (Parexel) guided participants through an activity aimed at establishing best practices for collaboration between pharma and non-pharma stakeholders. These collaboration efforts are particularly important for publications activities, and participants discussed the types of non-pharma stakeholders who should be involved, best practices to promote collaboration, and areas for improvement within the industry. The workshop allowed experiences of collaboration efforts from different individuals across the industry to be shared, with a view to generating a standardised framework of best practice to use in the future.

Sprint activity: How do we strengthen the position of publications as a trustworthy source to all audiences?


KEY TAKEAWAY

  • There is a need for changes to both the peer review process and the use of post-publication metrics to help strengthen the credibility of publications.

In the third sprint session, Priti Nagda (Taylor & Francis), Simon Stones (Envision Pharma Group), Jonathan Patience (Taylor & Francis), Catherine Elliott (Envision Pharma Group), Mithi Ahmed-Richards (Taylor & Francis), and session participants explored potential barriers to public trust in publications and ways to increase trust. Participants worked in groups and focused on 1 of 2 key measures of credibility: peer review and post-publications metrics. Those focusing on peer review were encouraged to come up with innovative ways of ensuring that this process truly evaluates the quality and reliability of research. Discussion topics were wide ranging and included reviewer fatigue, reviewer bias, training and accreditation for reviewers, and the inclusion of patients as peer reviewers. The groups focusing on post-publication metrics agreed on the need for the standardisation of these measures across journals and proposed that ISMPP issue a call to action on this topic. Other discussion areas included an educational campaign to raise awareness and understanding of different metrics, the importance of evaluating the quality as well as the volume of conversations, and how to measure trustworthiness. The workshop allowed ideas to be shared between individuals across the medical communications industry, and participants were encouraged to continue their engagement with this important topic.

Member research oral presentations

Accurate COnsensus Reporting Document (ACCORD) checklist: a reporting guideline for consensus methods


KEY TAKEAWAY

  • ACCORD, the first reporting guideline for consensus-based studies, is now published and available for use.

In a session moderated by Andy Shepherd (Envision Pharma Group), Niall Harrison (OPEN Health Communications) introduced the Accurate COnsensus Reporting Document (ACCORD), the first reporting guideline for consensus-based studies. The checklist was developed over the last 3 years, with full endorsement by ISMPP, and the final product was published in PLOS Medicine in January 2024. Development of the guidelines was led by a steering committee of publications experts from diverse backgrounds and 58 panellists underwent 3 rounds of anonymous voting and commenting. The final checklist of 35 items was narrowed down from an initial list of 56 potentially relevant items identified during a systematic literature review. While 21 of the 35 items included in the checklist relate to the Methods section of the manuscript, more than in any other existing reporting guidelines, over 70% of people surveyed felt that ACCORD was less complex than the CONSORT, STROBE, or PRISMA reporting guidelines. As such, Harrison and colleagues hope that this new guideline will improve completeness and transparency when reporting consensus studies.

Customising patient communications through quantitative and qualitative insights


KEY TAKEAWAY

  • Use of an omnichannel approach and tailored communications/content can reach patients more effectively, helping to improve shared decision-making and patient outcomes.

In the second member oral presentation, Kris Schuler (Pfizer) described a multi-step pathway used to optimise patient communications in the oncology space, based on patient preferences. Initial engagement with broadly-focused patient steering committees (Pfizer Oncology Patient Centricity Ecosystem (POPCE)) was used to identify health literacy barriers affecting patient care, followed by a specific focus on optimising time to treatment for patients with prostate cancer. Following identification of challenges in the treatment journey, patient populations were prioritised and aligned on healthcare and consumer attributes, and claims and consumer data were integrated using machine learning models, with clustering analysis used to identify 4 key patient profiles. Patient profiles were validated and 2 profiles, ‘accessibility-challenged traditionalists’ and ‘under-served digital wizards’, were selected for assessment and development of targeted omnichannel plans due to significant unmet needs and a large potential for change. An additional pan-oncology survey was utilised to assess patient and caregiver perceptions of enhanced publication content (EPC), with 92% of patients reporting that they would share EPC with their treating physician; plain language summaries (PLS) and videos were deemed most useful. Following further patient feedback on PLS, 7 health literacy resources were developed to support patients:

  • Understanding the clinical trial process
  • Navigating clinical trial information websites
  • Four tips for finding medical information online
  • How to read an abstract for a clinical trial publication
  • Common terms used in abstracts/research articles for clinical trials
  • Abstract PLS at scientific congresses
  • The basics of medical meetings.

Seeing it in the Flesch: comparing readability between AI-generated and human-written plain language abstracts


KEY TAKEAWAY

  • PLS generated by a bespoke AI system are easier to read than those written by medical writing professionals.

David McMinn (Sorcero) and colleagues investigated whether using bespoke AI approaches to generating PLS could improve quality, readability, and accessibility of PLS. This is a subject of considerable interest, with a recent survey showing many readers cannot reliably distinguish between healthcare text written by a human or by AI.

In their study, 1 of 3 posters selected for presentation as a member research oral, they compared readability scores, such as Flesch-Kincaid, and population-level accessibility of AI-generated versus published human-written PLS. PLS were identified via PubMed, and the scientific abstract from the original publication was used to auto-generate a PLS using AI. The original and AI-generated PLS were then compared using readability metrics, accessibility, reading time, and subject matter expert assessment of quality.

Overall, AI-generated PLS were easier to read than the human written equivalents and are therefore accessible to a larger proportion of the population (~50%) than human-written equivalents (~12%) and the scientific abstract (~1%). Using a second AI approach, and following optimisation, >75% of AI-generated abstracts were rated as ‘good’ by subject matter experts.

In conclusion, the authors showed that PLS generated using bespoke AI processes are easier to read and more accessible than those written by medical professionals. Whether use of such generative AI tools saves time and produces content that is preferred to human-written PLS by end-users is the subject of ongoing research.

Innovation meets tradition: the future of publication extenders


KEY TAKEAWAY

  • A more strategic and comprehensive approach to publication extender strategies is needed.

The volume of medical materials being published every day is enormous, with a new publication emerging approximately every 26 seconds. Furthermore, HCPs are increasingly prioritising digital content, creating ever greater opportunities for article extenders as short-form learning materials. In this plenary session, a 4-part plan aimed at bridging the gap between ad hoc creation of publication extenders and the needs of the HCP community was presented.

Wesley Portegies (MedComms Experts) kicked off the session by emphasising the need to use article extenders in a much more holistic way, and to better align them with audience requirements. Illustrating this point, Kris Schuler (Pfizer) continued by presenting data showing that information overload is rife in medical communications. She reported that enhanced publication content results in a 2-fold increase in engagement with data; however, she also noted that extenders have to be used strategically. The first step of developing a publication extender strategy is to define the intended audience using ‘personas’ – a day-in-the-life representation of demographic, behavioural, and psychotropic information about a particular audience: who they are, what they do, what they think, what their pain points are.

The first step of developing a publication extender strategy is to define the intended audience.

Strategic approach to publication selection

Continuing the theme of using a holistic approach to developing article extenders, Louise Ostergaard (Novo Nordisk) described how to build a strategic key messaging framework for publication extender selection using input from personas, scientific platforms, and the publication plan. The steps include:

  • Strategic imperatives: choose 4–6 key messages using cross-functional input
  • Rank key messages: focus on specific needs for upcoming events
  • Assess publications: which publications will address these key messages?
  • Prioritise publications: which publications are important?

Once identified, Ostergaard explained that a grading system should be used to assign value to each article extender to determine their individual importance within the overall strategy.

Optimising reach and engagement

Discussing how best to optimise reach and engagement of extenders, Ostergaard recommended that companies showcase their publications using an external facing platform that hosts publications, congress materials, and article extenders all in one place. Search optimisation is also key to enable HCPs to find the right information quickly and easily. Ostergaard explained that social media can be difficult for pharmaceutical companies due to compliance considerations, but noted that the younger generation will be using social media more and more to inform themselves, making signposting data back to the original publication advisable. Lastly, Ostergaard described the use of a modular library of multichannel extenders that can be mixed and matched, with different elements removed, tailoring the extender content to the target audience.

Collecting meaningful metrics

In the final part of this plenary session, Portegies posed the question: how do we know if extenders are impactful? As yet, a single metric system for extenders does not exist, but Portegies suggested the GAME framework could be used to set metrics for article extenders:

  • Goals: set specific goals; why are you measuring metrics?
  • Actions: what are the actions you expect your audience to take, for example, would you expect a reader to share information?
  • Metrics: what are the metrics that can turn qualitative actions into quantitative values?
  • Evaluations: how impactful is your article extender?

A single metric for extenders does not exist, but the GAME framework could be used to set metrics for article extenders.

Portegies then stated that metrics do not work as standalone values, rather, it is the combination of metrics that is useful to evaluate impact. The future for this area may be metric dashboards, with the ultimate aim of a constant real-time stream of data reporting on how your content is performing.

Innovation in medical communications and publications through generative AI


KEY TAKEAWAYS

  • Medical communications companies and agencies should embrace AI at a level they are comfortable with or risk falling behind.
  • The generative AI future can be exciting if taken one step at a time.

In the final plenary session of the 2024 European Meeting of ISMPP, Richard Graves (Sorcero), Matthew Lewis (Inizio), Valerie Moss (Prime Global), and Jenny Ghith (Pfizer) discussed the hot topic of generative AI and its growing application within medical communications.

Understanding which AI tools to use

The first discussion centred around which AI tools are the best to use in medical communications. The panel highlighted that it is imperative to use the right tool for the right job, whether this be a model trained on the entire internet database, a more tailored model trained with private data, or a completely open source tool, such as Hugging Face. Key questions to answer when choosing an AI tool included:

  • What kind of data did the model ingest – is it structured or unstructured data?
  • How was the model trained?
  • Does the model have a custom user interface, or does it need to be built by the user?

It is imperative to use the right AI tool for the job – consider the kind of data on which the AI is based, how the AI was trained, and how the user interacts with the AI.

Challenges to AI innovation

On the topic of innovation in AI, Lewis thought the biggest challenge was not necessarily coming up with new breakthroughs, but rather the dissemination of innovations. He believes it is the responsibility of the life sciences to facilitate collaboration to allow diffusion of innovation. This section ended with a call to action for collaboration between AI developers and sharing of AI data to enable better outcomes for patients.

A brief history of AI literature searching

Following on from this discussion, the panel were asked what it means to pull information from the literature and to generate something new. Since the first AI tools appeared, the technology has developed to a level where they are now able to answer questions, extract key terms, perform semantic analysis, and perform more sophisticated searches for more relevant information. Generative AI can also tailor these searches to an individual’s needs – all features which are potentially transformative in medical communications. The panel’s message was for everyone to learn what tools are available and what is possible within these platforms to transform your day-to-day life!

The advent of living publications

The next topic to be discussed by the panel was that of ‘living publications’, where models such as Gemini (Google) can take existing scientific publications, turn them into code, replicate the studies, and extend the data sets. In the future, it may be possible to update publication data in real time, updating outputs on a publication ‘dashboard’, keeping the publication alive and relevant even after it has been published. The panel noted that the danger with this approach is that although AI capabilities are extraordinary, it is vital to always check the outputs carefully, as omissions and oversimplifications can occur. The panel also made it clear that any confidential data should not be entered into the platforms.

Individual responsibility

One of the last topics to be discussed was how organisations and individuals can adopt AI in their working lives. All organisations should be having conversations about ethics, technology, and compliance, and agencies need to be embracing and utilising AI within their own level of comfort. From an individual perspective, medical writers can take ownership of nearly every part of the ISMPP position statement on AI, including disclosing the use of generative AI in written work and validating AI generated content, ensuring there are no errors, compliance, or copyright issues.

The best way to learn about AI is to use it.

The panel concluded by discussing the key benefits of generative AI, namely increased speed, higher quality of work, as well as more comprehensive access to data sets. The panel felt that the limitations of AI are mostly human factors, for example, employers choosing not to progress or companies choosing not to share data and innovations. The generative AI future can be exciting if we each decide our individual level of comfort, prioritise what will be the most impactful uses, and take it one step at a time.

Poster awards, exhibitor raffles, and closing remarks

Matt Booth (ApotheCom) closed proceedings, reflecting on the meeting theme of innovation, collaboration, and evaluation, before announcing and congratulating this year’s poster prize winners:

  • Most reflective of meeting theme: Influence of metrics and enhanced content on healthcare professional engagement with publications – Sarah Clements, Alexa Holland, Erin Clarkson, Clair Osgood, Oliver Palmer, and Hamish McDougall.
  • Best original research: The ACCORD guideline for reporting consensus methods: results of an implementation study – William Gattrell, Patricia Logullo, Amy Price, Marcus Gbekle, Brian Alper, Emily Bruggerman, Vandana Chaudhary, Bert Yu-Hung Chen, Gwendolyn Elphick, Aisling Dixon, Silvia Maina, Susan Martin, Debora Mesojedovas, Dhanya Mukundan, Chona Patalen, Sangita Patil, Meenakshi Subramanian, Lin Wang, and Niall Harrison.
  • People’s choice: Using machine learning to explore social media engagement with medical publications – Adamos Spanashis, Nicola Lazzarini, Avgoustinos Filippoupolitis, Helen Stewart, and Simon Francis.

In closing, Booth thanked the programme committee, sponsors, partners, and exhibitors; encouraged attendees to look out for upcoming  ISMPP University webinars and new episodes of the InformED podcasts; and ended by noting that registration is now open for the 20th Annual Meeting of ISMPP, to take place on 28 April–1 May 2024 in Washington, DC.

Why not also read our summary of Day 1 of the meeting?

The Publication Plan also looks forward to bringing you more insightful and thought-provoking coverage from the forthcoming 20th Annual Meeting of ISMPP, due to take place on 28 April–1 May 2024 in Washington, DC.

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Written as part of a Media Partnership between ISMPP and The Publication Plan, by Aspire Scientific, an independent medical writing agency led by experienced editorial team members and supported by MSc- and/or PhD-educated writers.

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Meeting report: summary of the 56th EMWA hybrid conference on writing in plain language for publications https://thepublicationplan.com/2023/11/30/meeting-report-summary-of-the-56th-emwa-hybrid-conference-on-writing-in-plain-language-for-publications/ https://thepublicationplan.com/2023/11/30/meeting-report-summary-of-the-56th-emwa-hybrid-conference-on-writing-in-plain-language-for-publications/#respond Thu, 30 Nov 2023 12:29:39 +0000 https://thepublicationplan.com/?p=14828

The 56th European Medical Writers Association (EMWA) Hybrid Conference Day took place on 10 November, with delegates able to attend sessions on Writing in Plain Language for Publications, and Artificial Intelligence (AI) in Medical Writing. The seminars covered these topics through presentations and panel discussions, with the aim of providing practical recommendations and advice to medical writers and communicators. A summary of the first session on Writing In Plain Language for Publications is provided below to benefit those who were unable to attend, and as a timely reminder of the key topics for those who did.

Our summary of the session on AI in Medical Writing can be found here.

Writing in plain language for publications


KEY TAKEAWAYS

  • Clear and accurate science writing improves communication with patients, fights ‘fake news’, and helps healthcare professionals (HCPs) gain insights into other fields.

Introducing the topic of plain language summaries (PLS), Andrea Bucceri (Lumanity) stressed the importance of communicating science clearly and accurately, highlighting the ability of PLS to help communicate with patients, fight misinformation (or ‘fake news’), and allow HCPs to gain valuable insights into other fields. Noting a degree of uncertainty regarding PLS among industry publications professionals as recently as 2014, Bucceri emphasised how PLS have now become an important part of medical publications, with most journals allowing PLS within articles, some making them compulsory, and others allowing standalone PLS.

The importance of PLS – publishers’ perspectives


KEY TAKEAWAYS

  • PLS are needed to increase the accessibility of science to everyone.
  • Good Publication Practice (GPP) guidelines recommend that every biomedical publication include a PLS.

In this session, representatives from the publishing industry shared their views and insights on PLS. Caroline Halford (Springer Healthcare) began by explaining the distinction between PLS, plain language summaries of publication (PLSP), and regulatory lay summaries. PLS – the focus in this symposium – are approximately 250-word long, jargon-free summaries that are published with the parent publication and target a broad non-specialist audience. On the other hand, PLSP are plain language adaptations of full manuscripts, often targeting a patient audience. Regulatory lay summaries are mandated summaries of clinical study reports focused on a study’s primary and safety endpoints, targeted at the study’s participants.

Halford explained why PLS are becoming so important, stating that with the move towards open access, biomedical publications are being read by increasing numbers of HCPs and members of the public. Both groups need clear and comprehensive information that is not easily misunderstood. PLS also offer a quick and convenient way for doctors to keep up-to-date with their fields.

PLS are needed to increase the accessibility of science to everyone.

Halford recognised that the value of PLS for HCPs and patients is well-established, with 71% of HCPs rating PLS to be “very/extremely useful” and around 1 in 6 HCPs referring patients and families to online PLS. She also referenced surveys conducted among patient organisations and patients and their caregivers demonstrating the importance and value of PLS as a source of health-related information for these groups.

Concluding, Halford highlighted the tangible benefits of PLS. Research shows that articles with PLS are more likely to be downloaded than those without, and that of all article enhancement types, PLS produce the highest comprehension, understanding, enjoyment, and desire for more updates.

Felicity Poole (Taylor & Francis) elaborated further, emphasising that a PLS is a constituent part of the parent article and shares the same Digital Object Identifier (DOI), in contrast to a PLSP, which is a standalone publication. Noting how PLS can be text-based, graphical, or make use of audio/video, Poole shared some best practices for PLS when considering which format(s) to use:

  • Always include a text-based PLS with an article, as this will be indexed on PubMed, making it more discoverable.
  • Include both text and graphical PLS if possible, since graphical PLS are most popular.
  • Include audio/video PLS if the journal allows for this, to increase accessibility for audiences with specific needs.

Poole also drew attention to the wealth of available resources to help publication professionals implement PLS, including those from the European Medicines Agency, Open Pharma, Envision Pharma, and the International Organization for Standardization (ISO), ‘How-to’ Guides from Patient Focused Medicines Developments (PFMD), and the updated 2022 GPP guidelines (GPP 2022).

Referring to GPP 2022, Poole highlighted key points from the recommendations regarding which publications should include a PLS:

  • A text-based PLS should be prepared for any clinical trial publication that follows the Consolidated Standards of Reporting Trials (CONSORT) guidance.
  • Ideally, a PLS should appear with every biomedical publication, keeping in mind the audiences for the information being presented.

Poole continued by identifying the important factors to consider when choosing a target journal and stressed the importance of checking publisher guidelines since they will all be different and not all publishers offer PLS:

  • What is the journal’s target audience?
  • When is the point of submission – alongside the original article or post-submission?
  • Does the journal index the PLS on PubMed?
  • Does the journal provide good guidelines on the format, length, and readability level?
  • Is the PLS open access, or hosted behind the paywall for subscription journals?
  • What is the peer review format – the same reviewers as the manuscript or experts in plain language?

Available metrics for measuring the value of PLS were also discussed briefly, however, Poole noted that the use of metrics is complicated by difficulties in separating PLS views from article views – a topic revisited in the panel discussion following the presentations.

Poole ended by saying that something is always better than nothing. A text PLS should be included as a minimum, and infographics, graphical abstracts, and audio and video PLS included where possible.

Something is always better than nothing. A text PLS should be included as a minimum, and infographics, graphical abstracts, and audio and video PLS where possible.

 Writing considerations for plain language


KEY TAKEAWAYS

  • PLS should be targeted at the right reading age for your audience, using simple language with short sentences.
  • Use the active voice and visual formatting elements that support understanding.

Adeline Rosenberg (Oxford PharmaGenesis) discussed the key considerations when writing PLS or other documents requiring the use of plain language. Rosenberg highlighted the importance of targeting the right reading age for the intended audience but acknowledged the difficulty in doing this successfully. The UK National Health Service advises that health information should be pitched at a Year 7–9 (ie, ages 11–13 years) level to ensure that 85–93% of patients and the public can understand it, whilst elsewhere research has shown that medium complexity language, defined as a reading age of 14–17 years, was preferred.

Similarly, Rosenberg thought that readability scoring systems including Flesch Reading Ease Score, Flesch-Kincaid Grade Level, SMOG, Gunning fog, and the Coleman-Liau Index, as well as the basic readability statistics in Microsoft Word were useful tools but should not be used in isolation. Rosenberg advised testing written material on 2–5 people representative of your target audience as a better method of ensuring the language is understandable. Publication professionals can also use previously published PLS and PLSP as a guide, for example by accessing Taylor & Francis’s Plain Language Summary Repository, Future Science Group’s PLSP Repository, or by searching “hasplainlanguagesummary” in PubMed.

Regardless of the level of information provided, it should always be written in plain language that is simple and clear.

Beyond readability, Rosenberg suggested that writing tone and message should be different for different audiences, for example a non-promotional tone for HCPs and a sensitive tone for patients. A focus on the bigger picture for patients and accurate presentation of the material to prevent misinterpretation by the media are also important.

Moving on to practical considerations for producing plain language documents, Rosenberg outlined the following best practices:

  • Use simple language and avoid medical jargon.
  • Use short sentences.
  • Use the active voice.
  • Simplify numerical information and consider presenting it graphically to aid understanding.
  • Consider how best to present risk – present data as both a fraction and a percentage.
  • Consider including a phonetic glossary.

Good visual design elements also aid understanding, including using short, bold headings and using questions as section headings. Images and graphics should support understanding of the text, be standalone, and be user-tested. Basic formatting is also important to aid the reader’s understanding:

  • Use large sans serif font (at least 12 pt).
  • Use lower case bold for emphasis.
  • Left justify text with ragged right.
  • Leave plenty of space around text.
  • Break information down into discrete sections.
  • Use images that directly support the text.
  • Use bullet points to list content, and call-out boxes to highlight important content.
  • Avoid italics, ALL CAPITALS, underlining (and parentheses).

Rosenberg concluded by signposting some useful resources for writing in plain language, including: MRCT Glossary, EMA Medical Terms Glossary, NCI Cancer Dictionary of Cancer Terms, NHS Resources for Health and Digital Literacy, Health Literacy Online from Health.gov and Patient Information Forum (PIF) ‘How-to’ Guides.

 Translating PLS


KEY TAKEAWAYS

  • Translating PLS is important to provide global equity in health awareness.
  • Ensuring cultural sensitivity whilst maintaining accurate information is essential.

Ana Sofia Correia (Ana Sofia Correia Medical Translation & Writing) presented the next session covering translation of PLS. Correia began by establishing that most scientific articles are only published in English, despite English speakers comprising less than 20% of the world’s population. In addition to producing PLS in English, we must ensure that the information reaches the non-English-speaking populations that we are targeting to provide equity in health awareness.

Translating PLS is important to provide global equity in health awareness so that everyone is able to make better-informed health decisions.

Summarising the role of a medical translator in PLS, Correia identified the following key principles:

  • Adhering to the principles of plain language – translating without introducing complexities.
  • Safeguarding cultural sensitivity and contextual relevance – incorporating culturally relevant examples whilst maintaining simplicity.
  • Ensuring consistency in simplification throughout the document.
  • Collaborating with stakeholders to maintain scientific integrity.
  • Navigating ethical considerations to balance dissemination of accurate information with cultural sensitivity.

Correia elaborated on the PLS translation process and stressed the importance of beginning translation only after finalisation of the PLS in the source language to mitigate the time and costs of additional revisions. After translation, the PLS must be checked to ensure that it is true to the original, for example, by back translating. In addition, it should be tested in the relevant target populations to ensure that it is easily understood.

Recognising the challenges involved in accurate and culturally sensitive translation of PLS, Corriea recommended the following strategies to address these issues:

  • Graphical elements: decide on target languages and work with translators from the planning stage to anticipate different text-lengths within graphical elements, and ensure that graphical elements are culturally appropriate and understandable in the translated version.
  • Linguistic and cultural aspects: use simple, clear language and culturally relevant examples whilst avoiding idioms and oversimplification.
  • Identification of target languages: demographic studies, health surveys, and epidemiological data can help identify the languages spoken by the most relevant populations.
  • Cost: develop templates and glossaries to expedite the processes and use translation tools and resources in combination with human translators.

Correia ended by highlighting some useful medical translation tools, including: Translation is not Enough: Cultural Adaptation of Health Communication Materials (ECDC), Getting It Right (ATA), Everyday Words for Public Health Communication (CDC), Clear Writing (European Commission), and Readability Formulas: 7 Reasons to Avoid Them and What to Do Instead (UX Matters).

 Panel discussion

The presentations were followed by a lively panel discussion bringing together all the presenters from the morning session plus Hamish McDougall (Sage). Key discussion points included:

  • Dissemination of PLS translations: many publishers allow for the submission of translated PLS and may have in-house translation capabilities. However, discoverability of translated PLS is an issue and collaboration with search engines to increase discoverability and use of social media to increase dissemination are key.
  • Use of metrics to measure PLS access: since PLS are embedded within full-length articles, it is difficult to discriminate between access to PLS and access to the rest of the article. Adding additional clicks to allow for metrics would make PLS less discoverable. Though we know that patients and doctors want PLS, more research is needed to prove the benefits of PLS. Use of metrics to assess PLS access in different geographical regions would be useful in determining the most appropriate languages for translations.
  • Peer review of PLS: concerns were raised around peer reviewers ignoring the PLS during review of the main article. Representatives from the publishing industry clarified that guidance on reviewing PLS is provided for peer reviewers to ensure that this is included with their review. Journals try to include plain language reviewers, including patients from both within and outside of the disease area where possible, or editors from a different therapeutic area. In the case of translated PLS, patient reviewers also review the translated language.
  • Acknowledging patient contribution: authors are encouraged to be comprehensive in acknowledging patient contributors and reviewers. Patients should be included as authors if they meet the ICMJE authorship criteria, and otherwise included in the acknowledgements.
  • Use of acronyms in PLS: acronyms should not be used as a way of reducing word count. They should be used sparingly and expanded at first mention unless it is a common word eg, DNA, HIV, and URL.

Why not also read our summary of the afternoon session on AI in Medical Writing.

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Written as part of a Media Partnership between EMWA and The Publication Plan, by Aspire Scientific, a proudly independent medical writing and communications agency that believes in putting people first.

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Patient engagement in industry-sponsored publications: an interview with Christine Vanderlinden https://thepublicationplan.com/2023/11/23/patient-engagement-in-industry-sponsored-publications-an-interview-with-christine-vanderlinden/ https://thepublicationplan.com/2023/11/23/patient-engagement-in-industry-sponsored-publications-an-interview-with-christine-vanderlinden/#respond Thu, 23 Nov 2023 09:28:40 +0000 https://thepublicationplan.com/?p=14793

There is growing appreciation of the benefits of patient involvement during the drug development process, from clinical trials to data dissemination and post-marketing activities. Consequently, patient involvement is increasingly being advocated in industry and journal policies and guidelines. Following her participation at the 2023 International Society for Medical Publication Professionals (ISMPP) EU meeting, The Publication Plan spoke to Christine Vanderlinden, Senior Director, Head Global Publications at GSK, to gain her insights on patient engagement within medical communications. Christine also discussed the latest update to the Good Publication Practice guidelines (GPP 2022), on which she was a co-author, and provided her thoughts on data dissemination and the use of social media within the pharmaceutical industry.

At the 2023 European Meeting of ISMPP you took part in a panel discussion which covered patient authorship of industry-sponsored publications. In your experience, what are the key benefits and challenges when involving patients as authors?

“Key benefits are addressing the needs of patients in scientific/medical publications and making complex scientific/medical content more understandable and accessible to an audience from diverse backgrounds. We can certainly demonstrate that patients and industry can work together in an effective way, while ensuring all ethical measures are in place. Enabling patients to directly report in a scientific manuscript their own personal experience to the medical and scientific community also increases confidence that publications address topics that have a real-world relevance. Finally, we provide a clear example of inclusion.”

“Enabling patients to directly report in a scientific manuscript their own personal experience to the medical and scientific community also increases confidence that publications address topics that have a real-world relevance.”

“Key challenges include ensuring the appropriateness of engaging patients as authors. This is an important consideration for companies looking to develop policies for working with patient authors and should be approached with a broader view of patient engagement at study level. We should also be very careful not to create the perception of engaging patients as authors to convey specific product messaging and we should ensure patient authors are fully engaged during the entire process of the publication to guarantee authorship.”

Patients may contribute to many aspects of the publication process, including but not limited to contributing as an author. For example, they may review materials or help to design clinical studies. Could you describe your experiences of working with patients in these or other roles? What are your key learnings from such experiences?

“Patient engagement should not be considered in silo for one activity but should be looked at from a broader perspective ie, considering the patient engagement journey as an end-to end activity from study design to publications. Considerations for patient engagement can also differ between therapy areas and different approaches may be required for example in rare diseases, and for therapeutic treatments versus prophylactic treatments. Patients as reviewers either of a whole publication or of a plain language summary included in a publication bring rich insights and make the research more tangible and accessible from an end-use perspective.”

“Patients as reviewers either of a whole publication or of a plain language summary included in a publication bring rich insights.”

The guidance in GPP 2022 surrounding compensation of patient participants and patient advocates is clear and does not preclude offering compensation for involvement with publications activities. Is this sufficient and/or should there be more guidance to industry in this area?

“This area is still very new overall in the publication world and each company needs to conduct their own risk assessment and determine their approach towards this topic. As such, patient authors should not be considered differently from other authors and any compensation needs to be aligned with the overall approach of each company and follow transparency principles.”

“Patient authors should not be considered differently from other authors and any compensation needs to be aligned with the overall approach of each company.”

At the 2023 European Meeting of ISMPP, you also discussed the use of independent platforms such as Figshare and industry-owned platforms for disseminating research. Could you briefly share your thoughts on the pros and cons of each of these platforms for sharing content? Does GSK currently use either method?

“I believe that accessibility of publications and publication content is key. Some of these platforms can be an interesting way to increase that accessibility by increasing the entry points to a publication and therefore increasing its discoverability. The downside of this is that we need to ensure full transparency and decrease complexity by linking all of the outputs generated from each data set/piece of research.

GSK is not systematically using Figshare for all publications but is using the platform to post publications enhancements when journals do not provide the option of hosting such content. In those cases, a link to the Figshare post is included in the main publication. Some journals also use the platforms to post appendixes and additional materials to the main publication.”

Thinking more broadly about data dissemination, what are your key considerations when making publication decisions with regards to publishing open access or using enhanced features such as plain language summaries or graphical or video abstracts?

“Our main considerations are linked to making the research data more discoverable, accessible, and understandable by the key target audiences and also making it more accessible for broader audiences and use. On the content of the publications itself, we need to specifically focus on the language use, the style, the way to present the information, the importance of visuals and podcasts to be considerate of this broad usually non-scientific, non-medical audience.”

“We need to specifically focus on the language use, the style, the way to present the information, [and ] the importance of visuals and podcasts…”

Has the GPP 2022 update or your involvement in its development changed your approach to any publication-related processes? Which aspects of the guidelines do you think will have the most impact on daily working practices?

“The GPP 2022 update has not changed my approach to publications related processes overall. None of the principles of GPP3 have been modified in GPP 2022. GPP 2022 is mainly focussed on new emerging trends and provides guidance and insights on those topics. For instance, I believe that the recommendations on patient involvement will support companies to align on this topic and encourage them to further develop patient engagement in research and research data communication.”

Do you feel social media should have a greater role within the medical communications industry, and if so, in which areas? Do you feel the mention of social media in the GPP 2022 update will encourage its use or is further guidance needed?

“Social media is fully embedded in our societal habits, including in scientific and medical communities. So, the use of social medial platforms needs to be considered carefully. Social media is a sensitive topic as it is subject to local regulations and there is a thin line in perception between what is considered scientific communication and what constitutes promotional activity. Hence why I believe that social media policies should remain in the scope of the external communication departments of companies who have a broader view and in-depth understanding of regulations in this regard and of journals who disseminate publications in a neutral way. GPP 2022 is not encouraging the use of social media for publication dissemination but rather deferring to the approach of individual companies as part of the broader topic of use of social media in external communications.”

Are there any new topics or areas which you feel could be expanded further in future iterations of GPP?

“I believe that with the rapid evolution and expansion of artificial intelligence, this topic will need more attention in the next iteration of GPP to provide aligned guidance and standard approaches in this field.”

Christine Vanderlinden is Senior Director, Head Global Publications at GSK and can be contacted via LinkedIn

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Have you experienced working with patients within medical communications? (choose all that apply)

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The role of the patient advocate in medical communications: an interview with Patrick Gee https://thepublicationplan.com/2023/10/31/the-role-of-the-patient-advocate-in-medical-communications-an-interview-with-patrick-gee/ https://thepublicationplan.com/2023/10/31/the-role-of-the-patient-advocate-in-medical-communications-an-interview-with-patrick-gee/#respond Tue, 31 Oct 2023 10:43:31 +0000 https://thepublicationplan.com/?p=14617

Increasingly pharmaceutical companies and medical publishers are drawing on the valuable insights and first-hand experiences of patient advocates when developing therapies and reporting medical research. Following his presentation at the 2023 Annual Meeting of the International Society for Medical Publication Professionals (ISMPP), The Publication Plan spoke with Patrick Gee, a patient advocate who is passionate about striving to achieve equitable healthcare access. Patrick describes his background as a patient with diabetic kidney disease and talks about his continuing mission to spread hope to others though his role as a patient advocate. Patrick is the Founder of iAdvocate and is also an Ordained Minister.

Could you tell us a bit about your background? Did any specific experiences of being a patient with diabetic kidney disease prompt your decision to become a patient advocate?

“My background is in justice, law and criminology. In 2003, whilst I was at work, I was feeling a bit sluggish and it was recommended that I go to the emergency room after the nurse took my glucose level and it was 758 mg/dL. In the emergency room they performed a blood test, the A1C, which was 11.7%, and it was then that I was diagnosed with having type 2 diabetes and was referred to an endocrinologist. Then 10 years later, in April 2013, during a routine doctor’s appointment, I was told that I was currently at stage 3b of end stage renal disease and I hadn’t a clue what that meant. In the ten years during which I had been treated for diabetes, I had never been told that the condition was the leading cause of kidney disease, so to hear that I was at stage 3b, when I didn’t know anything about any stages really caught me off guard. I was also told that my kidney function was between 30 to 35%, and again I didn’t know anything about the functionality of a kidney. So I was dumbfounded, I didn’t know how to interpret what I was being told, and I certainly didn’t know how to go home and explain it to my family. I was referred to a nephrologist, who told me that I would eventually need dialysis and would go into kidney failure, but at that time I just needed to abstain from chocolate, nuts and dairy products to slow down the progression. I had gained around 150 pounds in weight because my kidney function was declining kind of fast and I wasn’t able to pass all of the toxins out of my body, so on December 1st, 2013, I underwent my very first exchange of peritoneal dialysis. After being told that I had lost my kidney function due to diabetes, my main reason for wanting to be an advocate was to be able to go out into the community and to be able to talk about health literacy because I had no information prior to my diagnosis. I wanted to target at-risk communities and rural communities who hadn’t been given any medical information on particular disease states. So my advocacy kind of launched from my diagnosis and that’s where I have been ever since.”

“My main reason for wanting to be an advocate was to be able to go out into the community and to be able to talk about health literacy because I had no information prior to my diagnosis”

At the 2023 ISMPP Annual Meeting you referred to your work as a BMJ patient partner. Could you describe what this role involves in terms of authorship and peer review? How are BMJ and other publishers driving advances with this type of initiative?

“In 2018 I was asked to participate in an international study about different therapies and drug innovations pertaining to the management of type 2 diabetes. I believe I was one of five patients out of maybe 15 people on this particular committee and we were looking at all of the different research on sodium-glucose cotransporter-2 (SGLT2) inhibitors and glucagon-like peptide-1 (GLP1) agonists, and even some other medications like metformin. We were really giving a patient perspective based on how the research was explained and what we thought would benefit us not only individually but as a collective. That particular process with BMJ was great because I knew the prominence of the BMJ and was excited to be able to participate in such a great publication. They couldn’t offer an honorarium but could make me a co-author and to me that was like somebody going to the Oscars and winning the award for supporting actor. To me co-authorship was better than money because of the prominence. Throughout the process we were not seen as weak, afflicted or even subservient, but we were actually made to feel like partners, like equals, so all of us had an equal say and there was even more emphasis on what we had to say. If we didn’t understand anything, the study team would stop and take their time to explain it, so it was really a great opportunity. It was at that point that I really learned to appreciate how the patients’ perspective can go towards helping industry, medical providers, scientists, and clinical trialists in understanding certain product developments or particular therapies.”

Why is it so important for pharma companies and medical publishers to involve patients when reporting medical research? What are the main barriers to patient involvement in this area and how can these be overcome?

“In my personal and professional opinion, I believe that the reason that pharma companies should include patients is because we are the end users. We can share our lived experiences and describe how some of these therapies and technologies actually work, some of the pros and the cons, the benefits and some of the things that really need to be worked on, such as side effects. We know there is no such thing as the perfect therapy but as patients or end users we can tolerate certain things when we can better understand them. As patients partnering with pharmaceutical companies, we can share our lived experiences but maybe some of our gifts and talents in other areas can add to the design of the technologies. We are also able to go back out into the communities to explain medical research, help clinicians, community health workers and even educate those that may be in the same disease state to better understand how pharmaceuticals work. We can help break down the barriers when it comes to ensuring that clinical trial partnership or recruitment is more diverse and inclusive to everyone. One of the biggest barriers is fear, and that’s on both sides. From the pharmaceutical companies there is the fear of not knowing how to talk to their consumers in a manner that doesn’t suggest they are trying to recruit them. I know the pharmaceutical companies that I work with are now very community minded. They know that in order to be able to engage the public they have to literally become a part of the community – they take the time to understand the needs of the communities, the needs of those who will use their therapies. They understand that it is more than just the therapies that need to be considered, but how a person lives, the affordability of the therapies, whether the patient has insurance and if they don’t have insurance how pharmaceutical companies can work with insurers to ensure the patient has access to the product. From the patient standpoint, because of a lack of diversity when it comes to clinical trials you have conspiracy theorists that always want to put things out there and they scare the public. Right now I believe with patient ambassadors, professional patients and advocates being able to go out and knock down those barriers, we can better help people to understand that working with pharmaceutical companies will not only help them but will also help their family at some point, down the generations, to be able to receive better medications, better treatment, better healthcare outcomes and overall better quality of life.”

“Pharma companies should include patients because we are the end users and we can share our lived experiences”

Plain language summaries (PLS) are recommended in the latest Good Publication Practice guidelines. How important do you think these are in disseminating medical research to patients? Are there any other formats that you think should be more widely used to ensure that patients are able to access the information they need?

“It wasn’t until I went to the ISMPP annual meeting that I really understood PLS even though I had written articles. Even the journals I wrote for never really explained them to me. Sometimes when journals ask for a patient perspective, they actually want patients to write in medical terminology that they are not familiar with. When PLS were explained to me a light bulb went off, because as a patient advocate I don’t understand all of the medical terminology and jargon as a lot of these things are complex, but when you put them in plain language, they are so much easier to read, to articulate, and understand, which allows dialogue with other non-healthcare professionals. PLS allow topics to be discussed with communities, who can share their opinions, which can then be taken back to healthcare workers and those in the industry. I really wish internationally that everyone would utilise this concept ─ I know that is a hard thing for people to do, but the annual meeting really opened my eyes. As a first-time attendee and as a patient, I was able to understand an entire conference without having to nudge a doctor to ask them to explain what was being presented. I felt that I was valued ─ they knew I wasn’t a physician, they knew that I was a patient, but they valued me enough to simplify information in a manner, which meant that the integrity was not lost, but everybody in the room understood the message, the need, and how we could all collaborate in this particular venture.”

“a lot of these things are complex, but when you put them in plain language, they are so much easier to read, to articulate, and to understand, which allows dialogue with other non-healthcare professionals”

You have a background in law, another area in which a lot of jargon is used and precise use of language is important. Does your expertise and experience in that area resonate with thinking about PLS in medical communications?

“After the ISMPP meeting, I was sitting on one particular advisory board and we were told we needed to write a white paper. I brought up PLS but got a lot of push back, so I said, OK, everybody in here has a medical degree but I’m the only one here with a law degree. I started throwing out law jargon and asked if they understood what I was saying. They asked how that was relevant, which illustrated my point. I was there as a partner, as an ambassador but they wouldn’t simplify the information. If they asked me to break down the legal jargon and explain it to them, I would be more than happy to do so. I said if you really want to understand how to break down that barrier of patient-physician or patient-provider communication, its plain language. I don’t know why for some people plain language is a curse word, perhaps those in academia have got so prestigious that they just don’t know how to communicate with the lay person. This also goes back to how you can better understand the patients that you care for ─ PLS meet us where we are, especially if we are trying to understand how to manage our disease state. In health literacy, we are using plain language when going into communities to explain about diabetes, kidney disease, or cancer so why can’t it be used in medical publications? That would be my question.”

When and how do you think it would be appropriate to use social media to share medical research with patients?

“Researchers and those trying to recruit for clinical trials or talking about medical innovations often use social media. In some aspects social media can be very good because it allows the public to stay abreast of new innovations and new technologies. The risk comes when you are dealing with negative comments as people often don’t know the difference between destructive and constructive criticism. I think the wording used is important ─ how will you get the biggest bang for your buck. You need to take the time to explain what it is you’re trying to do and understand that with social media you only have a limited amount of space to be able to talk in depth. A link or a QR code could be used to allow people to look into things further. I think in the age of social media, it has been really good at getting information out there, and allowing people to be reached who might not have known about but may be very interested in what you are posting. It allows them to access news and allows the news to be shared within communities and network so everyone can benefit from it.”

“social media can be very good because it allows the public to stay abreast of new innovations and new technologies. The risk comes when you are dealing with negative comments”

 You have talked about the need to ensure that everyone receives equitable treatment, and use the motto “I am the Voice of the Voiceless and Face of the Faceless in the fight against kidney disease.” What are the main issues you have encountered in terms of inequity within healthcare?

“When we talk about health equity there are a lot of things that are left out. Normally when people talk about health equity they are thinking about race or ethnicity. We know that race is not biological but a social construct, and when you look at ethnic minoritised groups, they are often left out due to systemic issues, not only in the United States but all over the world. What we fail to include when thinking about health equity is people over the age of 65 years, people living with disabilities, and people from the LGBTQ+ communities. Society seems to pick on women even though there are more women in this world than men. Yet women tend to be lumped into a minoritised group and there is a lack of balance and equality when it comes to the treatment of women. When you think about gender and other issues, there is a big void in the medical community for equal treatment and access to clinical trials, access to health literacy and access to a better quality of life, and these are the things that I’m very vocal and passionate about. I like to refer to the Universal Declaration of Human Rights, written by the United Nations in December 1948, which includes 30 articles outlining basic rights for human beings. We want to talk race and there is only one race and that’s the human race. If we can get back to that and just talk about human beings and understand that all human beings need to have a seat at the table, need to be treated equally, need to have access to medical innovations, drug development, and biologics, and need to have better care, especially those who are seniors or elders. Even when you look at our children there is a lack of diversity in paediatric care, especially if you look at the mortality rates in maternal health. So there are a number of things that I am very passionate about. If we could just treat people as human beings and stop looking at their exterior but instead look at their heart and the need to serve each other, I think we could certainly eradicate a lot of the current problems within the healthcare system.”

“all human beings need to have a seat at the table, need to be treated equally, need to have access to medical innovations, drug development, and biologics, and need to have better care”

You gave the 2023 ISMPP Annual Meeting your ‘award’ for the most inspiring or transformative patient partnership initiative. What can ISMPP and the wider medical communications industry do to improve equity and inclusivity?

“I think outside the United States they are doing an excellent job, especially with patient engagement. In the United States I think maybe there is an issue of not being widely known among patient groups. My advocacy isn’t just in kidney disease, it also covers diabetes and heart disease. I’ve not heard about ISMPP through the different societies that I work in when it comes to publications, and I had never heard of them before they reached out ahead of the annual meeting. Once I had been invited to the annual meeting I wanted to start letting people know about ISMPP, and the more patients that I’ve told, the broader the outreach has been. As patients, we are very limited in who invites us to be able to share our perspectives, but now I feel that if I am not listened to, I will reach out to this organisation that has ties around the world – if people don’t want to hear what I’ve got to say locally in the United States, then I will go and share my perspectives with like-minded people in other countries and we can come together as one. I think ISMPP could gain a bigger audience if it was to become more present and more vocal among patient groups in the United States. I guarantee that more patients will jump on board to share their perspectives, because I’ve discussed ISMPP with some of my peers they are excited and want to learn more.”

Which of the activities that you have been involved with as a patient advocate have you found the most rewarding and why?

“One of my activities that I find very rewarding is being a minister. If you look at the definition of minister from Hebrew and Greek, it means to serve. I love going into the community, meeting people where they are, whether they are in a dialysis centre, in the emergency room, a hospital room, a nursing home, a coffee shop, wherever they are, even in church sometimes, I meet people where they are. I’m a very good listener so I listen to what people say but I also pay attention to what they don’t say. When it comes to health literacy, I explain that I’m not a physician but because I work in a number of organisations and committees I can get information, not just in this country but from researchers around the world to help patients make better decisions when they go to the doctor – they can talk about the research and ask how a certain therapy can help them. I consider myself a hope dealer – I deal hope, and in dealing hope I get to understand things from communities and take that back to industry. That’s probably the most rewarding part of my advocacy, meeting people where they are and being with them in that moment and staying with them until they recover or they feel they can manage – for me that’s the most rewarding thing about what I do.”

Finally, what advice would you give to any patients who are interested in acting as a patient advocate or collaborating with medical publishers or pharma companies?

“The first thing I would say is understand your particular medical journey and understand that your medical journey is totally different to what someone else is going through, even though it may be in the same disease state. Understand that your story is important and how you are able to convey that is very important, especially when you talk to people in the medical industry. I would also tell those that are interested in becoming advocates, to make sure that they pick a particular path. Some people are more diverse in crossing over into different areas, whereas some people just want to stay focused in one particular area. It’s important to understand that in our advocacy, we can’t be selfish – my work is not about me, it’s about those who are suffering like me or suffering more than me. Being an advocate is not about being selfish it’s about fighting for justice and you have to know which justice you want to fight for. For me, as I stated, I’m fighting to remove all of the racial and social, even cultural barriers, so human beings can just be human beings – living, breathing human beings who may be going through certain trials or tribulations or afflictions and who need care, love and somebody there to support them. That’s what I would tell new and up and coming patient advocates.”

Patrick Gee is Founder of iAdvocate and can be contacted via geepatrick50@yahoo.com or LinkedIn.

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How often have you worked directly with a patient advocate when developing medical communications?

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Regional publication planning and the role of publication professionals: an interview with Jonathan Lee https://thepublicationplan.com/2023/10/04/regional-publication-planning-and-the-role-of-publication-professionals-an-interview-with-jonathan-lee/ https://thepublicationplan.com/2023/10/04/regional-publication-planning-and-the-role-of-publication-professionals-an-interview-with-jonathan-lee/#respond Wed, 04 Oct 2023 14:26:31 +0000 https://thepublicationplan.com/?p=14457

Jonathan Lee is Senior Manager, Regional Publications, Growth and Emerging Markets at Takeda Pharmaceuticals and the Asia Pacific Trustee on the International Society for Medical Publication Professionals (ISMPP) Board of Trustees. The views expressed here are those of the interviewee and do not necessarily reflect those of Takeda Pharmaceuticals or ISMPP.


When developing a medical communications strategy, understanding the needs of colleagues from different geographic regions is key to ensuring plans are relevant and usable by all stakeholders. Effective publication planning therefore requires publication professionals to have an appreciation of cultural and linguistic diversity to recognise how to adapt and optimise engagement with publications teams and authors at a local level. Following his presentation at the 2023 Annual Meeting of ISMPP, The Publication Plan spoke with Jonathan Lee, Senior Manager, Regional Publications, Growth and Emerging Markets at Takeda Pharmaceuticals and current Asia Pacific Trustee for the ISMPP Board of Trustees to find out more about the role of publication professionals in regional publication planning.

You’re a big advocate for the importance of medical publication professionals in regional publication planning. Can you explain why this is such an important role; what are the potential benefits to industry-funded biomedical research in eg, Asia-Pacific (APAC) and Latin America (LATAM)?

“We’ve seen from many sources of research that our ethnic and geographic backgrounds can influence how we respond to certain treatments (eg, cancer treatments); however, efforts to better capture such diversity in current clinical trials will take time to be fully realised. A lack of sufficient ethnic/geographic diversity impacts the generalisability of clinical trial results to the under-represented groups in the general population. Additionally, healthcare systems can vary greatly across APAC and LATAM, so international treatment guidelines may not be fully applicable or implementable in some countries in these regions. This very often results in a lack of local/regional data and/or guidelines to support physicians with clinical decision-making relative to physicians in countries that tend to have good representation in clinical trials. A lack of resources in some countries in APAC and LATAM can also be a barrier to the conduct of clinical trials in these regions. This underlines the importance of having relevant local/regional real-world evidence to support clinical decision-making. But real-world evidence can be more challenging to publish than clinical trial data, given the differences in the nature of such studies.

This is where the importance of medical publication professionals comes in. Of course, we need people who can effectively design and execute such studies, but there is a saying that while a good publication cannot improve low-quality data, a low-quality publication can make great data look bad. Given the general lack of relevant local data, you can see how important it is to ensure that any data that are generated get published and disseminated in an effective manner across all regions. Think about the number of lives that could be impacted by the publication of important real-world evidence, like drug safety and effectiveness. This impact becomes even more pronounced in countries that may not use English as a first language (eg, many of the countries within Southeast Asia).

Therefore, it is critical that barriers to the publication of clinical data from regions like APAC and LATAM are removed or lowered. In order to implement such an initiative effectively, we need to have medical publication professionals who understand local and regional cultural and communication norms and who are well-versed with industry best practice. It’s not an easy combination to find.”

We need to have medical publication professionals who understand local/regional cultural and communication norms and who are well-versed with industry best practice.”

You spoke at the 2023 ISMPP Annual Meeting and gave your insights into the role of publications professionals in the APAC region. What are some of the challenges to implementing global publication guidelines in a regional setting; how can publication professionals help to guide best practice?

“I think one of the biggest challenges is the assumption that all authors around the world are equally comfortable with sharing individual opinions, particularly differing opinions, in an open group setting. This does not always apply in cultures that favour group consensus and avoidance of confrontation over individual opinions and acceptance of open disagreement. Many countries in APAC (and other parts of the world) tend to have such consensus-seeking cultures. Some of these countries may also place more emphasis on hierarchy as a mark of respect, so open disagreement with a person who is considered senior to you is frowned upon.

Based on this you can then see how it may be challenging to collect individual inputs from a group of authors in an open forum in APAC. There is a tendency to wait for the most senior person to provide their thoughts first, before the rest of the group agrees as a mark of respect. Even if authors have differing opinions, they are unlikely to voice them.

A publication professional who understands this culture would know that soliciting individual opinions from such authors would be better done in an individual and personalised manner. Writing to or reaching out individually to authors would provide them with a safe space to express their opinions without fear of open disagreement with their colleagues. This individualised approach is even more important if the authors are not especially fluent in English. They may not be able to properly articulate their ideas in a language they do not regularly use and may also not want to appear foolish in front of their peers. Individually collected feedback could then be compiled and anonymised, so that all opinions can be reviewed without linking specific comments to individuals.

Separately, some cultures in APAC may favour face-to-face interactions or conversations over written responses – especially if you need to think in one language and then translate and articulate your thoughts in another language (consider the extra time required). While current practice and publication management systems rely on written documentation, authors in APAC may be more inclined to provide their thoughts through a conversation. Without a system that allows for documentation of such inputs, think about the amount of valuable clinical insights we may be missing because an author is unaccustomed to penning their thoughts or is unable to articulate them properly in English.”

Think about the amount of valuable clinical insights we may be missing because an author is unaccustomed to penning their thoughts or is unable to articulate them properly in English.”

We’ve seen the Good Publication Practice (GPP) 2022 guidelines translated into Chinese and Japanese. Do you think translation of GPP and other guidelines such as EQUATOR checklists is sufficient or do the guidelines themselves need to be adapted on a region-by-region basis to account for different cultural norms?

“Translations are a good first step, but I think they need to be adapted on a region-by-region basis for the reasons I’ve described above. A translation is a literal interpretation of the original document that retains the cultural context of the language it was first written in. While it would be helpful to understand principles, the translated document may still struggle to communicate underlying concepts across cultures, so uptake of such guidelines may remain low. It’s analogous to global clinical treatment guidelines – can the recommended treatment sequencing still be implemented if some of the treatments are unavailable in your local healthcare system? This was one of the motivations for drafting the APAC adaptations of GPP3 and GPP 2022.

Adoption of guidelines by regional and local journals would also influence author receptiveness to guidelines. This would provide an additional avenue of encouragement and influence for authors to be familiar with and adhere to guidelines and best practice.”

You’re a co-author on the recent Asia-Pacific-adaptation of the GPP 2022 guidelines published in Curr Med Res Opin. How did you and your co-authors approach the task of producing this guidance? What were the most important updates in GPP 2022 from an APAC perspective?

“I’d like to first recognise the efforts of the authors of the APAC adaptation of GPP3, particularly Blair Hesp, who spearheaded the initiative. Development of the APAC adaptation of GPP3 was prompted by a need to provide clarity on how recommendations in GPP3 could be practically implemented within the context of the cultural and communication norms of the region. With the development of GPP 2022, which had several significant changes, it was only natural that these updated guidelines would need unpacking for the APAC region.

One of the more important updates was on how summaries of medical research written for non-specialist and lay audiences (ie, plain language summaries; PLS) can be utilised in the region. There is no doubt to the value that PLS bring to a publication in terms of improving accessibility to data, but not all regional/local journals are currently set up to accept such materials. Authors and audiences in APAC may also be less familiar with such content. Coupled with the smaller budgets that regional/local publication teams may have, decisions on the development of PLS need to be very targeted to ensure that the content will be accessible enough to readers and not buried in a supplementary file. As regional and local journals start to support the publication of PLS, clear guidelines on the development and review processes of such content will be instrumental in encouraging their development by authors.

As regional and local journals start to support the publication of PLS, clear guidelines on the development and review processes of such content will be instrumental in encouraging their development by authors.”

Two other important updates were the commentary on the inclusion of patient authors and considerations for encore presentations at congresses. While the inclusion of patient authors is an important step towards a more holistic approach to biomedical research and drug development, the cultural landscape in APAC can add additional considerations. Physicians are often seen as senior figures to patients, so patients may be reluctant to share their opinions and physicians may perceive certain patient feedback as potentially undermining their expertise and therefore a source of embarrassment. There may also be situations where it would be culturally undesirable to be identified as being unwell – this may impact both the patient and their immediate and extended family.

On the topic of encores, there is a need for regional and local congresses to include clear guidance on their individual encore policies. Not all physicians may be able to attend international congresses, so encores provide an opportunity for them to still access important updates in biomedical research, more so if the encore is presented in a local language. Such increased access to data ultimately benefits patients who rely on their physicians to make important treatment decisions based on what they know.”

You also spoke at ISMPP about how the reliance on English as the default language of medical publications can be a participation barrier for non-native English speakers. What are some ways we can remove this barrier and what are the benefits if we can make participation easier?

“There are several things I can think of:

  • Inclusion of English captions in videos will help to provide visual alternatives for people who may have challenges understanding and following various accents. The ability to provide real-time translations with artificial intelligence (AI), even if not completely accurate, would make presentations easier to follow.
  • Provision of anonymised question posting platforms at congresses may encourage more questions from non-native English speakers. More so if there were options to post in your own language and then have it translated into English.
  • AI-supported translations of publications may help non-English speakers access information that they would not normally have. AI-supported search algorithms could also help to better identify publications in various languages and make manuscripts more accessible through search engine optimisation.
  • Having publication professionals and medical affairs representatives who are bilingual would allow for authors to provide input in the language they are most comfortable with. This would also allow their input to be accurately translated into English without losing any nuance and would go a long way to improving author engagement.
  • Consideration of longer timelines by industry sponsors and journal editors to accommodate the need for face-to-face interactions and/or translations.

The benefit of lowering or removing these barriers is the improved sharing of ideas and information to support patient care. Imagine if a physician in APAC has a wealth of experience with treating patients in a particular setting that physicians from outside the region are trying to learn more about. But the APAC physician has never shared this experience because there is a challenge in communicating this in English. If communication in English was removed as a barrier, imagine how much more we might be able to do for patients with new-found access to previously untapped sources of knowledge!”

The benefit of lowering or removing (participation barriers for non-native English speakers) is the improved sharing of ideas and information to support patient care.”

Is there a role for machine translation and/or generative AI tools to assist non-native English speakers with the publication process? What do you think could be done to encourage more biomedical research being published in multiple languages? Is mandatory multi-lingual publication of industry-funded biomedical research a goal to strive for?

“I’ve touched a little on this in the previous question. Building on that, I think it will be a practical question of how to balance the added time and resource costs of publishing in multiple languages versus the anticipated benefits. Idealistically, it’s a no-brainer if it benefits patients. Realistically, it would be challenging to mandate publishing in multiple languages if it is not financially viable.

Lancet Global Health has started supporting the publication of translated abstracts alongside the English version of accepted manuscripts, and I think this is a great step in the right direction. If the translated abstracts improve searchability of the manuscript in other languages, it will already start to make a positive difference in improving access to industry-funded biomedical research.”

“Lancet Global Health has started supporting the publication of translated abstracts… … If the translated abstracts improve searchability of the manuscript in other languages, it will already start to make a positive difference in improving access to industry-funded biomedical research.

We’ve seen a continued focus on plain English language content in the biomedical publications community over recent years. Presumably, plain language content in languages other than English would be beneficial for non-native English-speaking patients, carers, and healthcare providers? Do you think there’s enough provision for this in the biomedical publishing industry?

“There is definitely a benefit to having plain language content in multiple languages. However, it comes back to the challenges of regional/local industry teams having smaller publication budgets to support the development of such content and the ability of regional/local journals and publishers to support publication of such content. I think we will need to watch how the global uptake and development of plain language content progresses further before the movement trickles down to regional teams and journals.”

Elsewhere at the 2023 ISMPP Annual Meeting, we heard how ISMPP’s geographic base continues to widen into new territories, with increasing numbers of Certified Medical Publication Professionals outside of North America and Europe. How else do you think ISMPP (and/or other professional societies involved in medical publishing) can evolve to increase the relevance of publications professionals in APAC and other regions?

“The biomedical publication landscape in APAC is a little different from that of North America and Europe. The major centres of industry-funded biomedical research reside in the large markets of Japan and China, while the major concentrations of medical writers reside in Singapore, India, Australia, and New Zealand.

We can all agree on the value of face-to-face interactions with publication professional peers, as seen with the record turnout we had for the 2023 ISMPP Annual Meeting, but the challenge in APAC is how to bridge the geographic space between the research centres and medical writers. Generally, smaller budgets for industry and agency teams in the region present major challenges for travel to regional congresses. For example, a congress held in Singapore (the geographic mid-point of the region) would still require a 5–7-hour flight from Australia, 7 hours from Japan, 5 hours from China, 4 hours from India, and 10 hours from New Zealand.

So, it remains a chicken-and-egg situation. Should the stakeholders (industry teams, agencies, and societies) make a concerted investment (potentially loss-making initially) to increase the relevance of publication professionals in the region now? Or should they wait until there is a critical mass of publication professionals in the region to support sustainable efforts?

I personally feel it should be the former, but I acknowledge the challenges with such an approach. Until then, there is a need to focus on grassroots initiatives to bring the publication professional community together and facilitate knowledge sharing. I know of such efforts in Australia, New Zealand, China, and Singapore, but these initiatives remain largely contained within each of those countries. The ISMPP Asia Pacific Education Committee has been working hard to develop and deliver regionally-relevant content, but the committee’s current capacity only allows for the roll out of webinars on a quarterly basis.

The region needs a platform that will enable experience sharing and interaction across countries (and languages), and professional societies will need to consider engagement and advocacy with regional/local publishers and journals to support a two-pronged approach to establishing the value of publication professionals.

As the value of real-world evidence continues to be recognised by health regulators, we should also ensure that publication professionals are leading the conversations on best practices for the publication of such data. This will be the game changer for the relevance of publication professionals in the region (and in other countries which may not be involved in clinical trials).

Until then, the challenge remains with publication professionals across the region to continue to drive education and awareness of good publication practice by demonstrating the value of well-developed publications and their dissemination to the relevant stakeholders.”

As the value of real-world evidence continues to be recognised by health regulators, we should also ensure that publication professionals are leading the conversations on best practices for the publication of such data.

What about other stakeholders involved in biomedical publishing for example journal publishers, funding institutions, and medical societies? What other initiatives would you like to see them implement to facilitate ethical and transparent regional publication practices?

“It is critical that the stakeholders listed recognise the value of ethical and transparent regional publication practices, so that authors will be more inclined to also adopt such practices. At the end of the day, we need authors to realise that good publication practice will help to improve the quality and acceptance of their publications. Only then will we see a significant shift in attitudes towards the relevance of publication professionals in the region.”

Jonathan can be contacted via LinkedIn.

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How often do you take steps to adapt your medical publications at the local/regional level?

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Meeting report: summary of Day 3 of the 2023 ISMPP Annual Meeting https://thepublicationplan.com/2023/05/16/meeting-report-summary-of-day-3-of-the-2023-ismpp-annual-meeting/ https://thepublicationplan.com/2023/05/16/meeting-report-summary-of-day-3-of-the-2023-ismpp-annual-meeting/#respond Tue, 16 May 2023 15:01:35 +0000 https://thepublicationplan.com/?p=13826

Reconvening once again in Washington, DC, the 19th Annual Meeting of the International Society for Medical Publication Professionals (ISMPP) took place from 24-26 April with the theme ‘Patients First’.

With a record-breaking 720 participants, the meeting theme explored the role of patients and patient advocates as collaborators in medical research and medical communications. Thought-provoking and engaging keynote addresses, oral presentations, interactive sessions, and roundtables addressed these topics, plus other issues relevant to medical publications and communications professionals.

A summary of the third day of the meeting is provided below to benefit those who were unable to attend the meeting, and as a timely reminder of the key topics covered for those who did.

Read our summaries of Day 1, and the morning and afternoon of Day 2.

Summaries of Day 3

 Breaking down barriers to ‘patient-first’ approaches


KEY TAKEAWAYS

  • Effective patient engagement requires transparency, health literacy, compliance, co-creation, and recognition of the value of patient communities.

This informative panel discussion, hosted by Gavin Jones (OPEN Health), explored the fundamentals of patient engagement. On the panel were Ella Balasa (Patient Advocate), Alexandra Dubois (OPEN Health), Jenny Ghith (Pfizer), and Brittany Wolf Gianares (Pfizer).

Jones opened the discussion by explaining that if medical communications professionals get the fundamentals of patient engagement right, and engage patient communities thoughtfully and with compassion, patients will be more motivated to collaborate.

“[Patient engagement] is a critically important topic that permeates everything we do.” – Jenny Ghith, Pfizer

How can patients add value to the work of the pharma industry?

As a patient advocate, Balasa provided several thoughtful insights on how patient engagement can add value to the work of the pharmaceutical industry:

  • Understanding the burdens, needs, and preferences of patients can enable industry to optimise and tailor their products or services to meet the needs of patients.
  • By engaging with patients, there is likely to be less waste in terms of time, resources and finances, less need for protocol modifications, and more chance that patient education and marketing materials achieve their objectives.
  • A collaborative approach empowers patients and improves their ability to make informed decisions about their care and how to move research forward.
  • In rare diseases, patients are actively involved with monitoring and collecting data within their communities, which can help industry understand more about a disease.

Balasa concluded that the relationship between patients and industry is mutually beneficial as both communities are working together to improve patients’ lives, and it is important to keep this in mind to move patient engagement forwards.

What factors have been important for patients to feel comfortable about an organisation’s intent to partner?

Dubois brought both a patient advocate and industry perspective to the panel discussion on the transparency of intent. From a patient advocate perspective, she explained the importance of understanding a company’s true intent, whether it is self-serving or for the betterment of the community. Dubois highlighted several points that patient advocacy groups consider when navigating and building relationships with industry:

  • Making sure that that the company understands the true burden of disease, comes with questions, and actively listens.
  • Identifying their own objectives and aligning these with the company’s to create a mutually beneficial partnership.
  • Understanding whether the level of involvement required is commensurate with the drug development stage (to avoid disappointment if the treatment does not make it to market).
  • Ensuring information and outputs are shared so that patient advocates can ask questions and see how outputs could lead to improved patient outcomes.

Switching to an industry view, Dubois summarised the approaches industry could take when working with patient advocacy groups:

  • Undertaking a patient advocacy landscape analysis to understand who the strong voices are in the advocacy community.
  • Understanding and respecting that some advocacy groups may not want to partner with industry.
  • Using patient journey mapping to understand a disease state before approaching advocacy groups.

Wolf Gianares reinforced the need for there to be a two-way dialogue and for patients to be involved every step of the way, explaining how companies should lead with empathy and actively listen to patients’ unique perspectives: it may be the first time a patient is opening up to an industry professional, so companies should respect this. Companies should take time to brainstorm how industry can meet patients’ needs and demonstrate how they have elevated patient voices when creating outputs. If an output cannot be implemented (for example, due to legal or compliance issues), then companies should explain why and show that it was considered – transparency is key!

Pharmaceutical companies should lead with empathy and actively listen to patients’ unique perspectives.

What approaches can we take to improve health literacy?

Addressing the question of what can be done to improve health literacy, Wolf Gianares made several interesting points:

  • Companies should assess unmet needs and give patients what they want, plainly and simply.
  • Resources to help patients get to the root of the science go a long way to giving patients the confidence to be part of their care team.
  • It is important to reach out to patients using their preferred medium, and to consider format, access issues, and patient preferences.
  • Provide plain language summaries (PLS) so that patients have access to emerging scientific information.
  • Develop translations to serve different cultures and enhance publications to suit learning styles.
  • Conduct surveys to find points of confusion and understand how these may be overcome.

Balasa added that individuals will vary in their speed of understanding and may need nuanced support to navigate their health and disease. The relationship between patient and provider is the foundation of how patients can improve their health literacy, so it would be beneficial for industry to support those interactions by providing assessment tools to help healthcare professionals (HCPs) understand their patients’ health literacy and resources to facilitate the dialogue with their patients.

How can we maintain compliance and independence? How do we get it right the first time?

Ghith explained that compliance and legal teams can support companies with the enormous responsibility of ensuring that trust with patients is maintained, and that companies listen to patients and patient advocates and respect the patient relationship with their HCPs. Understanding the ‘why’ behind compliance and legal decisions is crucial so that this can be fed back to the patients. Ghith advised engaging with compliance and legal teams early in the process so that they can understand why materials are being developed and support medical communications professionals with the ‘how’.

From a patient advocacy standpoint, Dubois noted that industry partnering with patients is still a new concept and there are grey areas regarding compliant interaction. Dubois referred to her experience with an industry-sponsored advisory session between patients/caregivers and industry, which was useful for the pharmaceutical company but also gave patients/caregivers the opportunity to meet with industry professionals and break down preconceptions. To support with compliance, the advocacy group provided a ‘concept deck’ detailing what the relationship with industry partners would look like and how it would work.

How do we effectively co-create with patient groups?

From an industry perspective, Dubois described how OPEN Health works with their industry partners on behalf of clients and patients/caregivers through patient engagement programmes, noting several important points:

  • If you are developing materials that feature patients, use real patients.
  • Start early and manage expectations, making sure patients have clarity around how long the engagement will last.
  • Work to the patient’s schedule.
  • Have a single point of contact: a patient relationship manager.
  • Include a feedback loop by sharing outputs with patients.
  • Compensate accordingly and compliantly.

In summing up, Balasa emphasised the patient and their wellbeing must be the focus of collaborative interactions. Empathy has to be the root of all healthcare transactions, and engagement should not be treated as a box-checking exercise. A true partnership should be built with patients with a communication loop, feedback, and explanation. Compensation is also incredibly valuable to patients to make sure their lived experience and expertise are given the same weight as other stakeholder input.

A true partnership should be built with patients with a communication loop, feedback, and explanation.

Keynote: The 4th industrial revolution in life science: reshaping healthcare and medical communication with AI


KEY TAKEAWAYS

  • Artificial intelligence can be used to automate processes in a responsible, ethical, and explainable way that humans can understand.

In the final keynote of the meeting, Loubna Bouarfa (OKRA.ai) described her journey with artificial intelligence (AI), which began when she developed a surgical ‘cockpit’ during her PhD. The tool monitored surgical instruments and utilised AI to infer the stage of surgery with 90% accuracy and could predict errors, length of patient recovery, and how complex the surgery would be based on patient data collected before surgery. Even in these early days of AI, Bouarfa realised that the biggest challenge to AI adoption was trust.

The biggest challenge to AI adoption is trust.

Unlike the 3rd revolution (the development of the internet), which was based on a system of rules, the 4th industrial revolution will see the development of AI technology that understands the intricacies or the ‘art’ of what we do – eg, the art of writing or the art of surgery – and we will need to make sure this technology is developed in the right way.

In the context of healthcare, Bouarfa explained how one-size-fits-all validation is at a tipping point where stratified medicine is not enough and we will need to move to individual, precision medicine and to look at the human body as a holistic system. Machine learning models learn from data and do not assume a normal distribution. This will allow us to better predict the right treatments for patients and will mean that we can move from a volume-driven to an outcome-driven healthcare system.

What do we want healthcare to look like in 2050?

Imagining what the healthcare system might look like in 2050, Bouarfa sees the role of AI as being transformative:

  • The ability to leverage data from sensors/wearable devices/regular scans to assess risk and implement preventative medicine.
  • The use of collated data from the population to determine the best course of action when someone does get sick.
  • Collaboration between doctors and AI to support clinical decision-making.

To get to this point, we need to embark on a transformation, explained Bouarfa. Not to replace humans/doctors but to augment their capabilities and to achieve precision across the industry, including in medical writing. We are at the inflection point, and we are responsible for choosing which path we take. Will we embrace and guide or ignore the potential of AI?

“We need to embark on a transformation … … not to replace humans/doctors but to augment their capabilities and to achieve precision across the industry, including in medical writing.” – Loubna Bouarfa, OKRA.ai

How do we build trustworthy AI?

To build trustworthy AI, it must first be lawful, explained Bouarfa. Two additional criteria are:

  • Transparency: understanding what data are used to train the AI system, how the model was designed and validated, and its level of accuracy.
  • Explainability: getting to the point where AI can explain its methods to get to a prediction or decision. This requires deep knowledge and a lack of bias (data must be unbiased, diverse, and representative).

Bouarfa emphasised that it is our collective responsibility to help guide AI development for the medical communications industry in a compliant manner. Bouarfa noted that autonomous AI is not permitted in healthcare as it is a high-risk industry, so it will always be positioned where humans and AI must work together.

“Machines have huge computational power to get accurate solutions at volume, so we need to leverage this alongside human intelligence to drive optimised outcomes.” – Loubna Bouarfa, OKRA.ai

What does this mean for medical writing?

Medical writing will go through a similar revolution as in other professions, Bouarfa explained. Today we see AI automation of certain aspects of the process, such as formatting or organising text. By next year, we may see AI writing parts of scientific publications on critical care medicine. Over the next 5 years, we will see a huge increase in AI in scientific writing, but it will raise ethical concerns, and within 10 years, we will see responsible advanced AI that can automate scientific writing. A key challenge the industry will face is the creation of fake publications. We have a collective responsibility to define how the technology can be used in a responsible way. In the Q&A following Bouarfa’s keynote, she explained how the reinvention of medical communications through the use of AI should start with the industry itself. It will be important to define where automation can be used – where the risk and margin of error is not too great – and identify processes that are mundane and time consuming and focus on those to show usefulness and value.

“Over the next 5 years, we will see a huge increase in AI in scientific writing, but it will raise ethical concerns, and within 10 years, we will see responsible advanced AI that can automate scientific writing.” – Loubna Bouarfa, OKRA.ai

Patient-centric publication analytics: how to leverage new technologies, alternative metrics, and open access research to measure publication impact on patient outcomes


KEY TAKEAWAYS

  • Open access data and AI are revolutionising patient-centric publications and patients’ access to information.
  • Understanding patient preferences is key to delivering impactful patient information.

In this parallel session, Richard Graves (Sorcero) and J.R. Meloro (Pfizer) discussed the need to understand what patients want and how they interact with data to improve patients’ access to information and to measure impact.

Patient-centric publication requirements

Graves began by highlighting how diagnoses for rare diseases can be missed if disease information is not accessible and discoverable by both HCPs and patients. He explained that the publication field needs to focus on three key points:

  • Patients need accessible medical literature — open access PLS are their preferred method.
  • AI-powered analytics and alternative metrics should be applied for tracking provider and patient medical engagement.
  • Data should be disseminated through patients’ preferred methods of PLS content from their HCP, patient advocacy groups, and peer reviewed journals.

Diagnoses for rare diseases can be missed if disease information is not accessible and discoverable by both HCPs and patients.

Graves noted that the range of open access research sources has increased hugely in recent times (citing Unpaywall, OpenAlex, OpenCitations, and Crossref as examples), so ways of measuring the underlying impact and quality of the materials accessed by patients is key to understanding what works best. Graves also noted publication analytics, including web and alternative metrics, publication clinical impact scoring, intelligent citation data, and thematic labelling, that can be used to track scientific and patient engagement.

Graves discussed how generative AI can be used to produce validated, reproducible PLS to enhance accessibility, and could also be used to track the impact and uptake of plain language and accessible content, including what patients and HCPs prefer and think of publications. He also highlighted that the US Food and Drug Administration is likely to require PLS for all articles in the next few years (as required now in Europe).

Patient preferences in publications

Outlining the three pillars of health literacy – information has to be accessible, understandable, and actionable – Meloro emphasised accessibility as a key pillar because it is a fundamental barrier to improving health literacy. Accordingly, a lot of effort has gone into making medical information more accessible via open access publications and PLS. Altmetrics are also important as they enable measurability in publications, with journal impact factor no longer being useful according to Meloro.

In order to understand what patients want, Meloro detailed how Pfizer established an advisory board in collaboration with patient advocates. Patients were polled on how they wanted to receive information, with patient advocacy group websites being the most popular resource, followed by full manuscripts with PLS. The preferred publication format was infographic PLS, and patients were most interested in patient-reported outcomes. Joint top trustworthy sources of information were HCPs and patient advocacy groups (pharmaceutical companies were low on the list).

Graves then talked about pick-up of medical publications on social media as described in a Pfizer poster published in 2020, which concluded that the highest degree of engagement was with open access articles. In consideration of this, and the impact of PLS on patient information, Pfizer consolidated PLS that had not been published by journals, added enhanced content and supplementary materials, and hosted it all on the online open access repository Figshare. The result was that 18 PLS garnered 6,000 views without promotion or actively driving traffic.

Graves concluded by reiterating that low health literacy correlates with poor outcomes, whereas better understanding leads to better use of medicines and better outcomes. Access is the fundamental component of health literacy.

Access is the fundamental component of health literacy.

The future of publications: evolving to match behavior


KEY TAKEAWAYS

  • Understanding the preferences and needs of your target audience can help to identify the best channels through which to communicate medical information.
  • Publishing methods are evolving to meet the changing needs of patients and HCPs with a focus on shorter, more engaging publication formats.

Caroline Halford (Springer Healthcare), Gary Burd (IPG Health Medical Communications), and Catherine Skobe (Pfizer) were the presenters in this parallel session exploring how HCP and patient preferences for the consumption of medical information are evolving.

Burd presented a behavioural analysis of oncologists and cardiologists, contrasting differences in terms of their demographic characteristics, different needs for understanding different diseases, therapies and prescribing information, and how they go about researching this information. Burd explained how this knowledge can help medical communications professionals to understand their target HCP audience, how best to reach them, and how to optimise our communications with them. Burd provided illustrative examples from the behavioural analysis:

  • Cardiologists were less likely to use telemedicine, less likely to attend medical conferences, and less likely to educate their colleagues when compared with oncology specialists.
  • Oncologists were more active than other HCPs on social media platforms such as Twitter, and YouTube, and preferred digital formats such as podcasts to learn about medical information when compared with cardiologists.
  • Cardiologists preferred professional portals such as Medscape and professional associations for medical information and were more likely to read print journals compared with oncologists.

“We can tell a lot about doctors that helps us understand who they are, how we can reach them, and how we can optimise our communications to reach them.” – Gary Burd, IPG Health Medical Communications

Halford provided a perspective on how publishers have developed new solutions to meet the evolving needs of HCPs who are increasingly challenged by not having enough time to consume medical news and developments in research, and when they do have time, want engaging content that does not take too long to absorb. Publishers have responded to this need with shorter, more engaging formats such as Plan Language Summaries of Publications, podcasts, and infographic articles. Articles with these ‘digital shortcuts’ enjoyed higher engagement, with Halford explaining how articles that have a PLS are accessed more than those without, and that articles with video abstracts also gained more attention than those without. Research has also shown that digital shortcuts improve readers’ understanding of the information.

HCPs often have little time to keep up with developments in medical research and need engaging content that can be absorbed quickly.

Skobe closed the session by looking at how patient engagement is driving the evolution of publishing methods. Using results from a patient preference survey conducted to understand how patients consume medical-related content, Skobe established that after information from patient advocacy group websites, patients found a peer reviewed journal article with a supporting PLS to be the most valuable source of medical information. The format of the PLS was important to patients, with a preference expressed for PLS with visual and/or audio elements. Patients also wanted to hear about data from other patients, assigning greater value to patient-reported outcome data than eg, epidemiological research and health economics outcomes research. In terms of trustworthiness, patients identified physicians/HCPs, patient advocacy groups, and peer reviewed journals as the most trustworthy sources of health-related information.

The emergence of patient perspectives poster tracks: ensuring patient voices are heard at medical meetings


KEY TAKEAWAYS

  • Patient perspectives poster tracks are scientifically sound meeting sessions convened at medical congresses that allow patient advocates and patients to share their perspectives with the congress audience.

In this parallel session, Jenny Ghith (Pfizer), Brittany Wolf Gianares (Pfizer), Thomas Bognanno (Creating Healthier Communities), and Jennifer Regala (American Urological Association [AUA]) discussed the value of patient perspective poster tracks at medical congresses. Ghith opened by highlighting that congresses offer opportunities to connect with others and have conversations that advance learning. She then outlined Pfizer’s journey with patient perspectives posters, which was triggered by the realisation that the patient voice was becoming more important, but that it was challenging for physicians to have relevant conversations with patients.

The patient voice is becoming more important, but it is challenging for physicians to have relevant conversations with patients.

Introduction to the patient perspectives poster track

Wolf Gianares explained that the goal of patient perspectives poster tracks is to overcome the disconnect between physicians and patients. A patient perspectives poster track is a scientific meeting session that is fully integrated with congress programmes, with submissions that are reviewed and curated by a scientific committee (they are not industry-sponsored meetings or sessions dedicated to anecdotal information). They represent an opportunity for patient advocates and patients to share their perspectives on research generated by surveys, focus groups, and collaborations. Wolf Gianares ended her presentation by showcasing testimonials that confirmed how these tracks have generated positive dialogue between patients and HCPs/others in the audience.

Patient perspectives poster tracks present an opportunity for patient advocates and patients to share their perspectives on research … … and have generated positive dialogue between patients and HCPs.

Working together with societies

Regala spoke about how Pfizer and the AUA worked together to develop the patient perspectives poster track at AUA2022. She explained each organisation’s role and stressed the importance of buy-in to the patient-centric approach from each stakeholder. A formal agreement was reached that allowed them to support patients’ travel to congresses and ensure that deliverables focussed on patients. Regala also emphasised the importance of building relationships to have the patients’ voices heard, explaining how this could be done via advocacy groups and social media, and producing accessible information such as podcasts, newsletters, and one-page insights.

Elevating the patient voice

Bognanno shared his personal experience as a patient with cancer and what it was like navigating the unknown territory with regards to treatment options and disruption caused by the disease. Bognanno explained how patients want to have an open conversation with physicians but it is challenging dealing with different specialists (eg, oncologists, radiologists, mental health practitioners) who may all use different language/terminology: it is intimidating and leads to a disconnect between medical professionals and patients. This is why use of plain language is so important for both patients and physicians. A physician’s willingness to chat with a patient means a lot to the patient, but some patients find it hard to talk to physicians. Bognanno concluded his presentation by saying that his work with Pfizer has made him realise that he wants to be at the table. He would like physicians to take the time to have meaningful dialogues with patients so that they get to know the person better and work collaboratively.

Specialist language used by different HCPs is intimidating and leads to a disconnect between medical professionals and patients. This is why use of plain language is so important for both patients and physicians.

Guided poster tour: Diversity & Accessibility

On Day 3, the guided poster tour called out 4 posters covering the theme of Diversity & Accessibility (presenting authors shown in bold):

  • Guidance for social media posts on randomized clinical trial publications: A Delphi survey – Amy Ma, Alison Lovibond, John McGuire, Susannah Thornhill, Megan McNamee, Allison Solomon, Mark Lydiatt, and members of the BOLDSCIENCE Publications Working Group.
  • Are conference presentations accessible? Insights from an online survey to improve equity – Emily L. Messina, Zen Faulkes, Noofa Hannan, Mike Morrison, Anja Petersen, Heather Robertson, Lauren C. Strother, and James L. Wells.
  • Diversity in patient authors: a randomized bibliographic analysis – Karen Woolley, Amanda Boughey, Trishna Bharadi, Richard Stephens, Beverley Yamamoto, and Dawn Lobban.
  • Access to graphical abstracts via Google Images search: a pathway to connect patients with research? – Patricia Phipps, Katherine Leavy, Sandi Lusk, Cara O’Meally, Jaclyn Mironov, and Alyson Rice.

Changing publishing world – straight talk from journal publishers


KEY TAKEAWAYS

  • While AI may deliver efficiencies in medical publishing, it cannot totally replace the human contribution.
  • Patients contribute across the spectrum of medical publications, and articles featuring patient authors have significant impact beyond traditional citation counts.
  • Publishers continue to invest in platforms for enhanced publication content, but there are challenges surrounding the timing and discoverability of enhanced content with respect to the original article.

In this discussion session, a panel of journal publishers comprising David Sampson (NEJM Group), Caroline Halford (Springer Healthcare), Angela Cochran (American Society of Clinical Oncology [ASCO]), Jennifer Regala (AUA), and Kelly Soldavin (Taylor and Francis) examined current and emerging trends in the scientific publishing landscape and looked at how the publishing world will evolve in the coming years.

Sampson opened the session with a perspective on the current state of scientific publishing. In his opinion, people remain central to high-quality medical publishing, despite the rapid evolution of AI. Sampson believes that while AI can deliver efficiencies, it cannot replace the intellect, judgement, passion, ethics, and commitment of humans.

“While AI can deliver efficiencies, it cannot replace the intellect, judgement, passion, ethics, and commitment of humans.” – David Sampson, NEJM group

Reviewing publishing trends, Sampson discussed the transition from the historical publishing model (ie, paper plus editorial) to the modern paradigm of publishing accompanying audio-visual media, one-page summaries, and educational articles alongside original research articles. NEJM is planning to launch an AI journal in 2024, as well as additional journals where the NEJM leadership voice can have a positive impact. David concluded that through innovation of the traditional publishing model, NEJM have made good progress over the last 10 years in extending the reach and impact of published materials to broader audiences.

Halford reflected on the drive to increase the accessibility, discoverability, and impact of scientific information, principally driven by a shift to open access, noting a comparative study of 70,000 open access articles versus pay-walled articles that demonstrated significant benefits for open access in terms of citations, downloads, and Altmetric scores for the open access articles. PLS can further improve the discoverability and understandability of articles and are now mandatory for several Springer journals and available in various formats (eg, text, graphics, infographics, and videos). Enhanced digital content is now also mandated by several journals, where videos and one-page infographic summaries have proven popular with both authors and readers. In addition to enhanced content, new formats for articles, such as infographics and podcasts, are proving incredibly popular. Halford closed by noting that the patient voice is gaining traction, with some journals including patients as editors, peer reviewers, and editorial team members.

“Patient authors now contribute across the spectrum of publications, and articles co-authored by patients typically enjoy high download and Altmetric scores.” – Caroline Halford, Springer Healthcare

Cochran outlined ASCO’s focus on better integration to enable HCPs to access content across journals. To achieve this, editors meet regularly to identify topics and content suitable for cross-journal exposure. Cancer.net is home for most of the patient-facing content, where 225 clinician volunteers work alongside internal staff to vet the content and ensure alignment with the latest research. Cochran noted that an opportunity exists to better align journal content with that appearing on Cancer.net and went on to discuss several observed trends in the publishing arena.

  • Time-poor oncologists increasingly need to be able to access trustworthy and reliable information quickly.
  • The combined use of social media plus multimedia improves discovery (noting the potential for promotion bias to influence this trend).
  • Usage is growing: article views have increased by 28% and the number of unique visitors is up by 32%; notably, social media has not been a big driver of this growth.

Looking to the future, Cochran predicted that while journals will continue to play an important role in validating and disseminating information, curation will become increasingly important. It is likely that open access publishing will continue to grow, in part due to government mandates; however, this may have the undesired effect of exacerbating inequities in the research ecosystem by acting as a barrier to publishing for under-funded researchers. The publishing community also needs to consider how best to protect the public from mis/disinformation, a problem that is likely to get worse before it gets better.

“The publishing community also needs to consider how best to protect the public from mis/disinformation, a problem that is likely to get worse before it gets better.” – Angela Cochran, ASCO

Regala showcased the AUA’s open access title, JU Open Plus, which addresses a mandate for open access, and AUA News, which features content written by urologists or urology patients, with a continued focus on patient perspectives, diversity, and inclusion. Regala considers that visual abstracts are the future of accessibility, particularly for patients and lay readers. AUA also offer journal insights from the authors of every research article, with follow-up on social media; these insights are subsequently curated by disease state to improve accessibility for clinicians. Thus, Regala believes that the focus of publishing is shifting to post-publication activities including social media presence and videos associated with articles.

“Visual abstracts are the future of accessibility, particularly for patients and lay readers.” – Jennifer Regala, AUA

In summarising the outlook for the medical publishing landscape, the panel discussed an expanded role for patients in the publishing process, including involving patients as authors on research articles, clinical guidelines, and patient perspective articles, as well as representation on journal editorial boards and as peer reviewers.

The panel also discussed approaches to enhanced content and PLS, with Cochran explaining that there has been a real focus on and investment in enhanced content, video abstracts, infographics, and podcasts over the last 12–18 months, but noting challenges around the timing of dissemination due to the lag between publication of the original article and approval of the enhanced content. Halford placed an important emphasis on the discoverability of enhanced content, noting that the gold standard is to embed within the original research article or otherwise clearly signpost.

Why not also read the summaries of Day 1 and the morning and afternoon sessions of Day 2 of the meeting?

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Written as part of a Media Partnership between ISMPP and The Publication Plan, by Aspire Scientific, a proudly independent medical writing and communications agency led by experienced and dedicated industry experts.

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Meeting report: summary of the afternoon of Day 2 of the 2023 ISMPP Annual Meeting https://thepublicationplan.com/2023/05/11/meeting-report-summary-of-the-afternoon-of-day-2-of-the-2023-ismpp-annual-meeting/ https://thepublicationplan.com/2023/05/11/meeting-report-summary-of-the-afternoon-of-day-2-of-the-2023-ismpp-annual-meeting/#respond Thu, 11 May 2023 14:21:31 +0000 https://thepublicationplan.com/?p=13790

Reconvening once again in Washington, DC, the 19th Annual Meeting of the International Society for Medical Publication Professionals (ISMPP) took place from 24-26 April with the theme ‘Patients First’.

With a record-breaking 720 participants, the meeting theme explored the role of patients and patient advocates as collaborators in medical research and medical communications. Thought-provoking and engaging keynote addresses, oral presentations, interactive sessions, and roundtables addressed these topics, plus other issues relevant to medical publication and communications professionals.

A summary of the afternoon sessions from the second day of the meeting is provided below to benefit those who were unable to attend the meeting, and as a timely reminder of the key topics covered for those who did.

You can also read our summaries from Day 1 , the morning of Day 2, and Day 3

Summaries of the afternoon of Day 2

 

Strategic scientific communication planning in an omnichannel world: everything you wanted to know but didn’t dare ask


KEY TAKEAWAYS

  • For a medical affairs audience, effective omnichannel communication requires the right content, through the right channel, at the right time.

Omnichannel communication is increasingly being used in medical affairs, where there is an important need to clearly communicate complex information to a diverse audience. Michael Exon (Adelphi) and Dominic Sloane (Excerpta Medica) presented this introductory session on omnichannel communication in the context of strategic scientific communication planning, focusing on what omnichannel means for medical affairs and the key elements of an omnichannel plan.

What does omnichannel mean for medical affairs?

The presenters highlighted that omnichannel communication cannot be performed in isolation, but instead requires cross-functional collaboration using a structured approach to take a unified view of an audience’s information needs and preferences. Compliant sharing of audience data between teams is key to optimising omnichannel communication programmes.

Exon and Sloane explained that the healthcare professional (HCP) learning journey is inherently self-led, personal, and omnichannel; thus, there is no single model that can be imposed on all HCPs, and HCP learning journeys are unique to each individual. Accordingly, we must reassess our relationship with the HCP learning journey to create journeys that deliver “the right content through the right channel at the right time”.

There is no single model that can be imposed on all HCPs, and HCP learning journeys are unique to each individual.

What might an omnichannel medical communications plan look like?

An audience-centric approach dictates that the first step is to define and segment the audience. For example, is the HCP looking for top-level summaries, do they want to read in depth, or would they prefer to do their own research on a particular topic? With this knowledge, reusable, modular content can be developed to meet the needs of each audience segment, which can then be delivered through the relevant, connected channels. As a final step, content engagement with key audiences can be tracked and fed back into the initial segmentation to optimise the process and better define the audience segments.

The presenters highlighted the benefits of mapping the omnichannel approach, with the resulting interconnected framework divided into key channel types, namely third-party (eg, apps), owned (eg, publications, presentations, microsites, and emails), and earned media (eg, social media). While owned channels are easily updatable and provide valuable metrics thanks to everyday access, third-party channels can also host a level of controllable content and provide an element of trackable data, provided that functional partnerships are in place. Similarly, earned media is a worthwhile consideration as information communicated via this channel is inherently trackable.

How should I approach a data strategy for omnichannel communication?

As a first step, Exon and Sloane suggested liaising with internal stakeholders (eg, compliance, information technology, and other teams) to understand what is feasible and what is already being done within the business. The next step would then be to define what success might look like, establish metrics, measure impact, and receive feedback. In this way, it is possible to assess the effectiveness of engagement within each channel – ultimately, to ensure that communications work as well as possible and to permit the evolution and enrichment of content over time based on changing audience needs.

What does the future of omnichannel communication look like?

It is likely that omnichannel communications will focus on real-time personalisation of information enabled by modular content that is easily adaptable to local rules and regulations. This infers a key role for medical and publications teams in ensuring that all content ties back to scientific communications platforms and is supported by the current evidence base. As is increasingly the case, omnichannel platforms will feature mechanisms to facilitate constant improvement based on the data gathered. The presenters thought artificial intelligence (AI) and machine learning technologies will play an increasingly important role in transforming how individuals receive their information, via automation of insights, data analysis and content consistency, and generation of personalised content.

Artificial intelligence and machine learning technologies will play an increasingly important role in transforming how individuals receive their information.

ISMPP business meeting


KEY TAKEAWAY

  • ISMPP approaches the exciting frontier of AI technology in a strong position to impact patient care through engagement with HCPs and patients as these new tools revolutionise the profession.

Outgoing Chair of the ISMPP Board of Trustees, Dan Bridges (Inizio Health), opened the business meeting with a review of the society’s finances, which remain robust despite the recent challenging economic climate. ISMPP President and CEO, Robert Matheis, then shared his outlook on the future for the medical publication profession. With the advent of new AI technologies, including ChatGPT, Matheis described the exciting prospect of being a medical publication professional with the ability to use these tools to make a measurable impact on patient care. Matheis also noted the influx of smaller biotechnology companies whose publication needs differ to those of larger firms but are met by the core skillset of medical publication professionals.

Reviewing the ISMPP strategy, Matheis explained that the focus on investment and evolution of the society to support geographical expansion, digital innovation, and growth of existing partnerships remains relevant today. On the horizon, Matheis outlined forthcoming changes to the ISMPP West meeting, which will transform to become the ISMPP Academy. In combination with a planned restructuring of the ISMPP Committees, as well as the shift to a 5-year cycle for the Certified Medical Publication Professional (CMPP™) certification process, this change will allow ISMPP to remain nimble, current, and focused in its ability to address the needs of a new and wider membership base – now over 2,500 members – and the above-mentioned influx of smaller biotechnology companies.

AI technologies including ChatGPT present an exciting prospect for medical publication professionals to make a measurable impact on patient care.

Megan Weigel (Bristol Myers Squibb) delivered an update on the CMPP certification programme which has seen continued expansion into new territories, with new CMPPs in Sweden, Saudi Arabia, and Indonesia. Weigel encouraged existing CMPPs to become mentors to help others prepare for the examinations and reminded those in attendance of the 1 August 2023 application deadline for the next CMPP exam.

Bridges thanked departing members of the ISMPP Board of Trustees for their efforts during their 3-year terms and congratulated those newly elected to the Board, before handing over the gavel to incoming Chair, Monica Mody (Bristol Myers Squibb). In her closing address, Mody set out how the society will look to patients as guides to continue to publish data with rigour, transparency, and urgency and looked forward to the new frontier of AI technology while continuing to simplify information for HCPs and patients through initiatives such as enhanced publication content and plain language summaries (PLS) during her term.

Roundtables

On Day 2, attendees had the opportunity to take part in a second session of roundtables covering the following topics:

  • Co-creating plain language content to ensure road reach and understanding
  • Sharing real-world evidence with the public through plain language summaries
  • The art of reaching the patient where they are: creating and disseminating valuable patient content
  • Don’t be such a scientist! Unleash your inner storyteller
  • Clear and present data: how to increase the impact and reach of your medical publications with effective and appropriate data visualization
  • Local, regional, global publication plans – challenges to effective alignment
  • Not better, not worse, just different: ethical publication practices in the Asia-Pacific region
  • Beyond journal publication: boost your publication plan with extenders
  • Copyright and licensing dos and don’ts
  • Advocating the value of visually engaging posters
  • Much ado about access
  • An open forum for newer publication professionals
  • ChatGPT and BardAI: the dawn of generative AI in medical communications
  • ISMPP committees and opportunities for involvement
  • Integration of artificial intelligence in medical communications for de novo content generation
  • Creating consistent communication through effective scientific communication platform socialization
  • Maximizing the value of an advisory board and steering committee meetings

Following the roundtables, attendees had the opportunity to attend parallel sessions.

Publication planning outside of the global setting – the need to embrace regional diversity to better support patients


KEY TAKEAWAYS

  • To deliver the most impactful publications and greatest benefit to patients, it is crucial to engage with local publications/communications teams to understand cultural norms and requirements.

In the introduction and session overview, Blair Hesp (Kalnic Medical Communications) explained that English is the most commonly spoken language in the world. Yet, of the 1.5 billion people who speak English, three-quarters do so as a second language. This highlights the crucial need to be aware of cultural and linguistic diversity and emphasises the importance of understanding how diversity might influence publication planning and development practices. By combining local and international insights, it is possible to effectively optimise publication planning.

[There is a] need to be aware of cultural and linguistic diversity … … and how diversity might influence publication planning and development practices.

Semantics are important – geographical stratification can arbitrarily group heterogenous markets

William Dolben (Content Ed Net) discussed challenges to effective alignment in local, regional, and global publication plans. Given that more people are native speakers of Spanish and Mandarin, than English, it is important to consider the appropriateness of selecting the English language for publications. As publication professionals, we must be conscious of different cultures. As a case in point, Dolben highlighted differences between the English and Spanish languages and related cultural norms. For example, people in Spain have two surnames and these should be presented correctly in author lists. There are also inconsistencies in how terms are defined between the two languages, emphasising the importance of considering the accuracy and appropriateness of translations. This latter point is perhaps more important than ever, given the increasing need for translations as we move towards ever more patient-centric models of information delivery.

Obtaining comprehensive input from APAC-based authors will ultimately improve patient care

Jonathan Lee (Takeda Pharmaceuticals) presented author insights from the Asia–Pacific (APAC) region, stressing the need to consider cultural differences and communication preferences when engaging authors who speak English as a second language. In a cross-sectional survey of publication professionals, two-thirds of respondents noticed a qualitative difference in feedback from non-native English-speaking external authors, including a loss of context or clarity when providing feedback in English, and greater accuracy and detail when using their preferred non-English language. Lee concluded that forcing non-native English speakers to respond in English can be detrimental to the level of clinical insight gained, with potential follow-on repercussions for patients. Authors with English as a second language may also require more time to review, or access to appropriate translation support, to ensure relevant feedback. Lee went on to highlight the need to recognise cultural preferences and provided examples with reference to the APAC region. In a recent survey of publication professionals, two-thirds of respondents felt that in APAC, global publication guidelines are difficult to fully implement, require adaptation to accommodate the publication landscape, and do not consider cultural norms or practices.

In APAC, global publication guidelines are difficult to fully implement, require adaptation to accommodate the publication landscape, and do not consider cultural norms or practices.

Lee explained that societal or cultural traditions may place importance on consensus-seeking behaviours or on social hierarchy/seniority, whereby it is considered impolite or even rude to publicly challenge or question views held by those in senior positions. In these scenarios, one-to-one meetings, or emails, with the assurance that responses will be anonymised, may lead to more insightful feedback than group meetings or communications. To navigate these complex challenges, it is imperative that we engage with local publications teams to understand cultural norms and requirements. In doing so, we can obtain comprehensive local and regional insights to deliver relevant publications and improve patient care.

Mobilising patients as authors in publications


KEY TAKEAWAYS

  • Patient authorship ensures that medical information includes a patients’ perspective and is digestible by non-medical audiences.
  • Information for patients should be patient-integrated, not just patient-centric.

Jasmine Malone (OPEN Health) introduced and moderated this parallel session, which included short presentations by Elliot Abramowitz (Patient Advocate) and Imogen Allred (OPEN Health) and was followed by an extensive Q&A session.

Patient author perspective

Abramowitz – a published clinical psychologist with 40 years of experience – was diagnosed with stage 4 prostate cancer in 2013 and has been involved in patient advocacy since 2017. According to Abramowitz, medical information from the perspective of patients can only be conveyed by patients, with patient authors helping to make the information suitable for a non-medical audience. Providing a recently authored PLS published in Future Oncology, which was written by Abramowitz in collaboration with another patient author and an oncologist, Abramowitz explained how this type of collaboration can be helpful to all patients and foster patient–doctor dialogues.

Agency and publications perspective

Allred was an academic in neuroscience for almost a decade before moving into medical writing because she wanted to help patients in a more practical manner. She has worked across a wide range of therapy areas and types of materials for the last 3 years, including working directly with patients on review manuscripts and podcasts. In her view, patient authored publications should include the priorities of patients. Allred also thought it important to remember that patients are individuals and not a homogeneous group, with each patient having individual needs that must be considered. Allred emphasised the need to integrate patients in publication planning and ensure that the collaboration is mutually beneficial and empowers rather than targets the patient.

Patient authored publications should include the priorities of patients. Patients should be integrated into publication planning to ensure that the collaboration is mutually beneficial, empowering patients rather than targeting them.

The Q&A that followed these presentations highlighted the following key points:

  • It is important to include patients as authors because medical publication professionals cannot incorporate patients’ perspective without their input.
  • Although the ideal patient authors are those who are both patients and patient advocates, there is a need to include other patients’ viewpoints, as each patient is an individual.
  • There is a lack of real consensus and guidelines on the processes involved for including patient authors.
  • There is a need to make more patients aware of the potential to participate in publications.
  • Some patients may prefer to participate in non-traditional types of communications such as videos, discussion panels, or podcasts.
  • It may be beneficial to include patients as peer reviewers in publications.
  • Many patients are uncomfortable with writing, so they need to be made aware that support with writing is available.

Developing a patient lexicon to enhance patient communication – a case study


KEY TAKEAWAYS

  • Patient lexicons can reduce complexity and confusion in patient-facing materials, facilitating improved health literacy.

In this session sponsored by Vertex Pharmaceuticals, Reena Ketkar (Vertex), Ciara Silverman (Vertex), Alia Bucciarelli (Vertex), and Caroline Mathie (The Planning Shop) presented a case study on the development of patient lexicons in hemoglobinopathies.

Bucciarelli set the stage by emphasising the benefits of health literacy, explaining how low health literacy is associated with increased mortality, poorer self-reported health status, greater use of emergency healthcare services (but lower use of preventative services), higher rates of chronic diseases, and adoption of unhealthy behaviours such as smoking and alcohol consumption. Bucciarelli noted that improving health literacy was particularly important for rare diseases, where there can be less access to patient-facing materials compared with more common diseases.

Silverman went on to describe how a patient lexicon – a clear, accurate, and consistent vocabulary for a given disease state and/or therapy – can streamline communications with patients and caregivers and reduce complexity and confusion in patient-facing materials (including websites, consent forms, infographics, and PLS), thereby facilitating improved health literacy. Silverman outlined the key features of a patient lexicon as follows:

  • Preferred term: the term that should be used to drive consistency and alignment.
  • Definition: explanation of the term written at an appropriate level for patient communications.
  • Non-preferred term(s):  terms that should be avoided to reduce complexity and confusion.
  • Rationale: guidance and examples for how the preferred term and definition should be used.

The presenters then used a case study in the area of hemoglobinopathies to outline the process of developing a patient lexicon, from identifying and evaluating the pre-existing vocabulary used in a disease area/patient community; creating the draft lexicon and performing a health literacy review of its content; testing the lexicon with patients and caregivers and obtaining their feedback; and finally reviewing the feedback and incorporating it to develop and roll-out the final lexicon.

Ketkar concluded with some guidance on best practice for developing patient lexicons, highlighting the importance of including a health literacy section with the lexicon to improve accessibility and patient comprehension, and the need to incorporate sufficient time in the development process for appropriate medical, legal, and regulatory review. The presenters hope the lexicon presented in their case study (currently in its patient-testing stage) will help to standardise the language used to communicate with patients in the area of hemoglobinopathies and ultimately improve patient engagement and outcomes.

A patient lexicon – a clear, accurate, and consistent vocabulary for a given disease state and/or therapy –  can streamline communications with patients and caregivers.

Digital innovations in medical publications to enhance user experience and engagement


KEY TAKEAWAYS

  • Digital innovations can address the current need to engage time-poor audiences and be compatible with the trend towards increased use of mobile devices for access to medical information.
  • Immersive learning enables collection of unique insights and metrics that cannot be captured using non-digital or traditional methods.

The panellists for this parallel session on digital innovations in medical publications were Shalini Murthy (Parexel), Jennifer Granit (Parexel), Szilvia Mosolits (Bristol Myers Squibb), and Tara Miller (Bristol Myers Squibb). The focus of this session was to recognise key challenges for audience engagement in multiple settings and to identify innovative ways to engage with audiences, with the aim of improving the tools used for scientific exchange.

Audience engagement challenges

Granit summarised the current audience engagement challenges as the following:

  • Information overload due to more journals, congresses, and podcasts/news being available for time-constrained HCPs.
  • Limited engagement opportunities for HCPs due to hybrid and virtual congress formats.
  • Difficulty in measuring impact beyond traditional citation analysis.

Revealing how polling of medical communications teams identified interactivity, visual representation of information, accessibility and engagement potential, brevity of information, and limited use of jargon as key components of digital innovation, Granit concluded that the ultimate goal of digital innovation is to increase retention and understanding of the content.

The ultimate goal of digital innovation is to increase retention and understanding of the content.

Granit expanded on two types of digital innovations: those that summarise or reimagine content to focus on key information and those that optimise format and features of existing content for better user experience. The former type of digital innovation includes digital publication enhancers such as infographics, videos, podcasts, animations, publication explainers, and graphical PLS. These require separate content development and processes to ensure scientific integrity. Conversely, the second type of digital innovations contains no or minimal new content and thus lowers the review burden on authors, as well as being less time-consuming.

A case study on immersive e-posters

Mosolits then presented results from a case study on an immersive e-poster version of an existing congress poster. The immersive e-poster tried to combine all of the features identified as top priorities for digital innovations: it was user-friendly (it automatically scaled to any device), allowed zoom and navigation, and captured insights/metrics (the interactive nature of the e-poster enabled users to provide their feedback by using sad/neutral/smiley faces to react to the content). The immersive poster was well received, with approximately 7 times more views than static PDF posters within the same category at the same congress and around 5 times more views than the static version of the same poster.

The immersive poster was well received, with approximately 7 times more views than static PDF posters within the same category at the same congress and around 5 times more views than the static version of the same poster.

Mosolits outlined potential challenges and considerations for developing the immersive poster:

  • The need for new review and approval processes that ensured the HTML files were securely hosted and that the privacy of those who interacted with the poster was maintained.
  • The need to balance legal and compliance considerations (to avoid leading questions and commercial feel or tone) versus content desired by authors and reviewers.
  • Allowing the additional time needed to apply technology and approve interactive features.
  • Ensuring all stakeholders were educated on how to use the features so they could present to colleagues and share the QR code and URL.
  • Ensuring the congress was aware and supportive of the new features, particularly for the polling questions, because these were a novel feature of the poster.

Developing patient-accessible publication extenders: key stakeholder perspectives


KEY TAKEAWAYS

  • Publishers should be aware of the variety of publication extenders that can accompany articles.
  • Pharmaceutical companies should include PLS and other extenders at the earliest planning stages and consider developing style guides to ensure patient accessibility.
  • Medical communications agencies can help ensure content is developed at a level appropriate for patient audiences and in an engaging format.
  • Patient advocates are motivated to participate in content development and see value in furthering their understanding of their condition.

Caroline Halford (Springer Healthcare), Brian Scheckner (Jazz Pharmaceuticals), Jasmine Malone (OPEN Health), Jill Adelman (Patient Advocate), and Anna Frangou (session moderator, OPEN Health) formed the panel for this parallel session looking at developing publication extenders from a variety of perspectives.

The publisher perspective

Halford began by describing two established types of content and extenders:

  • Materials for patients: eg, PLS, digital extenders (video abstracts, infographics, audio discussions), and PLS of publications (PLSPs)
  • Materials by patients: eg, original research (PLS, videos), reviews (infographics, videos), commentaries (patient photos, audio slides), and podcast articles (infographics, plain-text transcript aids), where the target audience is not necessarily patients.

Halford referred to established data on the value of PLSPs for patients/caregivers as well as HCPs and explained how the metrics for patient authored content/extenders show they are impactful based on high numbers of downloads and citations.

The pharmaceutical company perspective

Scheckner then expanded on why pharmaceutical companies are interested in developing PLSPs, noting how they can align with the patient-centric mission and vision of pharmaceutical companies, allow patients and caregivers to seek further information about their disease state and treatments, and ensure that data are accessible to patients. Furthermore, open access PLS can increase diversity, equity, and inclusion by reaching all potential audiences. He reiterated that pharmaceutical companies can help to establish PLSPs as a standard part of the publication process by including them for all submissions and engaging with patient authors, reviewers, advocates, and/or caregivers where possible. The industry can also prioritise journals that peer review PLS and allow open access. Further, pharmaceutical companies can develop style guides for PLS creation (with appropriate reading levels and formats), as well as ensure budget allowances for PLS and other enhanced content.

Pharmaceutical companies can enable development of PLSPs by including them for all submissions, engaging with patient authors, reviewers, advocates, and/or caregivers where possible, and prioritising journals that peer review PLS and allow open access.

The agency perspective

Malone set out the agency perspective by asserting that everyone has the right to access and understand accurate information from reputable sources despite their background. She considered the following as key considerations for developing patient-accessible publication extenders:

  • Do not presume to understand what patients want to read about – co-creation and validation are essential.
  • Comprehension is key – follow the principles of health literacy.
  • Ensure accessibility.
  • Enhance engagement by employing engaging formats for information dissemination.

Malone then shared a step-by-step guideline for co-creating and validating patient materials starting with identifying the lay audience and their key unmet need. Once these are known, content should be developed emphasising the information most relevant to the audience and using visual and design elements where possible to aid understanding. Content should be reviewed for medical accuracy and to improve readability and comprehension, and Malone stressed the importance of the patient validation step to ensure the content is relevant, understandable, and meets the needs of patients. She added that smart use of creativity, technology, and tools can enhance the audience experience and improve data retention.

Smart use of creativity, technology, and tools can enhance the audience experience and improve data retention.

The patient advocate perspective

Finally, Adelman provided a patient perspective on publication extender development. She reaffirmed that patients need accessible materials to understand their disease, noting that inclusion of patient perspectives in publication extenders helps HCPs to truly understand the patient experience. Adelman shared that she was a patient author in an ophthalmology publication that was followed with a live podcast, and that participating in these activities made her feel that she was helping other people handle their own experiences better.

[Including] patient perspectives in publication extenders helps HCPs to truly understand the patient experience.

Guided poster tour: Plain Language Summary

On Day 2, the guided poster tour called out 4 posters covering the theme of Plain Language Summaries (presenting authors shown in bold):

  • Who are the authors of plain language summaries of publications? – Catherine Elliott, Jacqui Oliver, Lauren Manning, Rachel Jenkins, Joanne Walker, and Dawn Lobban.
  • Plain language summary formats: opinions and preferences of healthcare professionals – Caroline Halford, Matt Evans, Lydia Alborn, and Steve Winter.
  • Achieving health equity through shared decision making: evolution of plain language summaries (PLS) – Brittany Wolf Gianares, Raj Patel, Shivali Shah, Jennifer Ghith, Sam Garas, Christan Thomas, Kristine Schuler, Dean Campbell, Luciano Passador, Leah LaRue, and Martina Schwarzkopf.
  • Understanding the value of standalone plain language summaries of publications: updated findings from an online survey of readers – Jacqui Oliver, Dawn Lobban, Laura Dormer, Rachel Jenkins, and Joanne Walker.

 Awards reception

The 19th Annual Meeting featured the inaugural ISMPP Professional Excellence Awards, with the society recognising the achievements of its members in the following categories:

  • Lifetime Achievement Award: Yvonne Yarker
  • President’s Award: Dawn Lobban
  • Outstanding Committee Member Award: Sonia Schweers
  • Rising Star Award: Simon Stones
  • CMPP Award: Dana Fox

This year’s poster prize winners were also congratulated:

  • Best Original Research: What do doctors really do on the internet? – Gary Burd, Nicole Strangman, Caitlin Schoensiegel, Shubham Sarcar, and Heather Figlar.
  • Best Practice: A tale of three dashboards: the use of interactive data visualization in oncology publishing – Christian M. Thomas, Dean Campbell, Leah LaRue, Erikka Brewer, Travis Vaught, Julian Martins, Nishal Patel, and Jennifer Ghith.
  • Best Visual Communications: Peer-reviewed research articles in non-traditional formats – hidden in plain sight? – Sara Black, Bjorn Hanger, Bakhouche Bakhouche, Clare Bellward, and Marc Swift.
  • Publication Star: Are conference presentations accessible? Insights from an online survey to improve equity – Emily L. Messina, Zen Faulkes, Noofa Hannan, Mike Morrison, Anja Petersen, Heather Robertson, Lauren C. Strother, and James L. Wells.

Congratulations to all this year’s winners!

Why not also read the summaries of Day 1, the morning of Day 2, and Day 3 of the meeting?

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Written as part of a Media Partnership between ISMPP and The Publication Plan, by Aspire Scientific, a proudly independent medical writing and communications agency led by experienced and dedicated industry experts.

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