KEY TAKEAWAYS

• ISPEP’s white paper argues that pharmaceutical companies must move beyond superficial patient centricity to establish genuine, long-term collaborative relationships.

• ISPEP presents 5 strategic recommendations to transform how industry engages with patients throughout drug development lifecycles.

The International Society for Patient Engagement in Publications (ISPEP) has published a white paper challenging pharmaceutical companies to honour their commitments to meaningful patient involvement. Authors Chris Gray, Rob Wyer, and Steve Clark argue that while many organisations have embraced patient-centric rhetoric, implementation often falls short and risks alienating the very people it aims to support.

The authors highlight a growing disparity between pharmaceutical companies’ public commitments and patients’ experiences. Survey data reveal a stark perception gap: while 72% of industry employees agreed with the statement “My company communicates with care and compassion, transparent and unbiased information on diseases, treatment options, and available resources”, only 32% of patients agreed.

“Survey data reveal a stark perception gap: while 72% of industry employees agreed with the statement “My company communicates with care and compassion, transparent and unbiased information on diseases, treatment options, and available resources”, only 32% of patients agreed.”

The authors highlight that regulatory authorities are ahead of pharma when it comes to patient engagement: both  the Food and Drug Administration and European Medicines Agency expect patient involvement in the drug development process and consult directly with patient groups and individuals.

Five strategic priorities for revolutionising patient collaboration

The white paper presents a comprehensive framework built around 5 key recommendations:

1. Maintain continuity across the lifecycle

Organisations should ensure lifecycle continuity by establishing sustained partnerships that transcend departmental boundaries. Many companies fail to maintain relationships once specific studies conclude, despite patients requiring ongoing support. In addition, patients may become frustrated when requests come from multiple departments.

2. Build a legacy

Companies should establish enduring impact through collaborative, multi-sponsor initiatives that protect patient communities from development setbacks or shifting corporate priorities.

3. Elevate patient advocacy

Pharmaceutical companies must champion patient representation internally by embedding patient perspectives within core business strategy with executive leadership backing.

4. Measure and report progress

Companies should implement robust systems to track and communicate outcomes using comprehensive evaluation frameworks that combine qualitative insights with quantitative metrics.

5. Challenge, reinterpret, and rewrite SOPs

Finally, organisations must reform standard operating procedures (SOPs) that may inadvertently restrict meaningful patient collaboration.

The authors conclude that as patients are the end users, they ultimately determine the success of new therapies. Developing and maintaining patient collaborations will help to overcome the disconnect between patient and pharma needs and improve outcomes for all stakeholders.

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KEY TAKEAWAYS

• Digital health technology has the capacity to greatly improve outcomes for patients, but several barriers must be overcome before its full potential is unlocked.
• Early and consistent patient engagement is critical for developing digital health solutions that meet patient’s needs and preferences.

Digital health is recognised by the WHO as an essential strategy for improving health outcomes, yet significant challenges exist that limit its adoption. In a recent commentary in Therapeutic Innovation & Regulatory Science, Popa et al highlight the clear unmet need for digital health solutions designed with patients for patients.

There is a clear unmet need for digital health solutions designed with patients for patients.

Barriers to delivering digital health solutions that truly meet patients’ needs

The group identified several barriers that stand in the way of digital health solutions fulfilling their potential to improve health outcomes:

• Low patient engagement. Many developers do not appreciate the value of adopting a patient-centric approach early and throughout development, with patient involvement often limited to beta-testing during later stages, and digital health solutions not reflecting patients’ needs.
• Fragmentation. Siloed initiatives developed by large numbers of stakeholders (not necessarily including patients) have created a complex, disconnected digital landscape.
• Inefficient regulation. Traditional regulatory systems lack the agility to effectively process fast-paced digital development.
• Poor data transparency. Poor transparency around data sharing contributes to mistrust and reduced adoption of digital health solutions by patients.
• No best practice. Lack of process for best practice sharing or formal validation has led to digital health solutions that are not properly vetted to match patients’ needs.
• Poor education. Insufficient patient education has led to reduced understanding among patients of how to access and engage with digital healthcare solutions.

Engaging patients to break down barriers in digital health development

The authors propose a strategy that places patient engagement at the heart of digital health development, as decision-making partners throughout the life cycle of digital health initiatives. They predict that this has the power to:

1. facilitate a more cohesive digital landscape following improved co-operation between developers and patients;
2. speed up regulation, with patient co-designers serving as integrators between digital and traditional regulatory processes;
3. improve data transparency by involving patient co-designers in data management plans that include FAIR and encourage data sharing;
4. deliver products that truly match patients’ needs;
5. enhance patient education through identification of relevant modes of communication.

Popa et al call for “early, meaningful, and sustained engagement” between digital developers and patients to ensure digital health solutions are aligned with patients’ needs and improve health outcomes.

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The 20th Annual Meeting of the International Society for Medical Publication Professionals (ISMPP) took place once again in Washington, DC, from 29 April – 1 May with the theme ‘Storytelling: Its Art and Power’. Incorporating stories into medical publications can clarify complex ideas, build empathy, and establish trust, ultimately dispelling stigmas and misinformation. Over 700 attendees discovered the power of storytelling to unlock greater understanding in medical communications.

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.

You can also read our summaries of Day 1 and Day 2 of the meeting.

Summaries of Day 3

Publishing reimagined and the evolution of disseminating medical research

KEY TAKEAWAY

• With the transformative changes in journal publishing (including the move to digital formats and open access publishing), there is a need to reimagine publications while taking care to maintain quality and accurately assess their impact.

Jonathan Patience (Taylor & Francis Group), Mark Riotto (TheResearchPost), Stephen Towers (Healthcare Consultancy Group), and Rebecca Rozich (ICON) opened Day 3 by engaging in a topical interactive session about current trends in the publication of medical research and their impact on the future of publishing.

Changes in journal publishing

In the first presentation, Patience reviewed the dramatic changes in medical journal publishing seen over the past 25 years, highlighting the:

• shift from print to electronic publishing
• declaration of open access mandates from funding organisations
• proliferation of open access journals.

While these changes have undoubtably improved accessibility and knowledge dissemination, some challenges have arisen, such as information overload, potential erosion in the quality of submissions, strain on the peer review system, threats from preprint platforms, and a rise in predatory journals. Proposals to overcome these challenges include:

• use of new formats to disseminate information to a time-poor audience
• approaches to maintain publication integrity and quality peer review
• changes to publishing revenue models to improve accessibility and speed of publication
• application of precise metrics (eg, using artificial intelligence [AI]) to focus on reaching the ‘right’ audience.

Publishing reimagined

In a thought-provoking presentation, Riotto looked at how the drive for accessibility is challenging the traditional model of publishing. He first questioned whether long-form primary manuscripts may be outdated and suggested that short forms (extenders, visual formats, etc.) may soon be reimagined as the primary publication. However, long-form papers will always be needed for scientific validation.

To expedite publication and provide a solution to funder mandates for better accessibility, Riotto went on to propose transformative agreements for new publication models, including:

• contracts with publishers that seek to shift payments away from a subscription model and towards open access publishing
• payment bundles that include both reading (subscription) and publishing (open access) under a single contract (‘read and publish’).

Maintaining quality and integrity

Subsequently, Patience deliberated how publishers can act to maintain quality and integrity in the face of increasing volumes of submissions. He proposed several responses to drivers for change:

Patience indicated that, while it remains the ‘gold standard’, peer review may be improved through measures such as reviewer training, reviewer pool expansion, reward schemes, increased editorial resource, pre-screening of manuscripts, new models of review (eg, open peer review), and ethics education.

Peer review may be improved through measures such as reviewer training, reviewer pool expansion, reward schemes, increased editorial resource, pre-screening of manuscripts, new models of review, and ethics education.

Improving metrics

In the final presentation of this session, Towers highlighted that article-level metrics have revolutionised our ability to measure the attention of, and real-time impact of publications on, a broad audience, but several challenges remain, including how to:

• determine the ‘real’ impact of publications — solutions might include use of more granular metrics and introduction of AI- or natural language processing-based text analysis to assess if a citation supports the original article
• deal with a lack of transparency, standardisation, and consistency in publication metrics scoring — solutions might include application of the EMPIRE Index and multi-stakeholder collaboration to agree on universal standards and definitions
• prevent self-promotion via manipulation of publication metrics — solutions might include use of AI to detect manipulation and reducing institutional drivers of the ‘pressure to publish’.

What do we see as the innovations over the next 5 or 10 years?

Considering this question in an interactive discussion, the panellists stated that they expect the following innovations in publishing in the near future:

• greater interactivity – expanded use of visual and digital publications, and extenders
• increased collaboration among stakeholders over publishing models
• growth of open data initiatives
• consolidation of business models, including expansion of journal ‘families’
• better use of storytelling
• journals taking a more curatorial role over publications
• more initiatives to counter ‘bad actors’ to improve trust in publications.

Metrics on the horizon: how do we measure success of publications in a rapidly evolving technological world?

KEY TAKEAWAY

• Employing AI technologies and a data-driven approach to publication insight generation can help to broaden the reach and impact of medical publications.

The theme in this parallel session was the evolving landscape of metrics for measuring success in medical publications. Tomas Rees (Oxford PharmaGenesis),  Jim Streeter (Envision Pharma Group), and Kimberly Della Penna (Johnson & Johnson) explored different methods for evaluating success and discussed the potential for new technologies to impact on publication planning strategies.

Rees began by outlining the array of different metrics that have found use in medical publications. Reflecting on over a decade’s experience with publication metrics, he explained how different metrics can measure different aspects of engagement with a publication, but that some metrics were more valuable than others. For example, citations from credible sources are typically given more credence than social media shares. Furthermore, while different metrics can offer different types of insight, not all metrics are directly actionable. Rather than being used as performance targets, the purpose of publication metrics is to assess alignment between a publication and its overall goal.

In the next part of the session, Streeter elaborated on how the massive amount of data being collected on publications can be leveraged to inform decision making and improve the impact of publications. The emergence of AI as a tool will offer opportunities to analyse these ‘big data’ to generate meaningful publication insights. However, Streeter saw existing AI models as a starting point on which further bespoke functionality would need to be built to interpret and utilise data for specific use cases.

“The layers that go on top of these AI models are going to become very important so that we can get the right data at the right time.” – Jim Streeter

Real-time data was another concept that Streeter saw as crucial to understanding how people engage with publications. For example, understanding how long someone spends viewing a specific graph or section of text could be used to gauge their comprehension of the publication. Analysis in real-time could also allow content to be adapted more quickly and targeted or re-aligned to suit a specific type of user or a specific demographic. Acknowledging that there were privacy considerations involved with collecting and analysing information at a patient or healthcare professional level, Streeter described the importance of understanding and defining what constitutes an ethical approach for this type of insight generation.

Emphasising the need to incorporate data science and AI into everyday workflows, Streeter summarised that we are ready to start using these data-driven approaches to make better decisions about how we create, distribute, and measure the impact of our publications.

“We hear about AI, the amount of data that’s coming and really the value it’s going to bring so that we can make better decisions with our publications.” – Jim Streeter

End-to-end patient involvement

KEY TAKEAWAY

• Patient involvement in the development of medical treatments is an exciting new frontier that offers excellent value for all stakeholders but is dependent on strict guidance and a clear understanding of the roles and responsibilities of patients.

In this parallel session, Jasmine Malone (Open Health) introduced a varied panel of speakers, Robert Greene (patient advocate, HungerNdThirst Foundation), Behtash Bahador (CISCRP), and Hamish McDougall (SAGE Publications), to discuss key elements of end-to-end patient involvement in clinical development.

The importance of end-to-end involvement from the patient’s perspective

Greene provided his personal perspective on the importance of patient involvement throughout the drug development process and treatment landscapes. He began by reminding the audience that patients are individuals, which means that one patient is not necessarily representative of the full population. Despite this, Greene explained that patients provide unique insights and experiences that can enhance the relevance and reach of research and publications. Ensuring information is accessible, understandable, and reflective of real-world experience is the best way to build transparency and trust; provision of fair and ethical compensation when engaging patients was also noted as a critical factor.

Several ways to increase patient involvement were highlighted, such as training programmes and communications strategies created with patient involvement as a core starting element, advisory panels at the patient or patient advocacy group level, and encouraging collaborations between patients and groups such as pharma companies and medical publishers for the co-creation of materials.

Ensuring information is accessible, understandable, and reflective of real-world experience is the best way to build transparency and trust.

Demonstrating the value of end-to-end patient involvement

Bahador opened his presentation by defining patient involvement as “collaboration with patients in their communities to understand and address their needs across all stages of medicinal product development”. He showed the EUPATI model of patient involvement, which describes opportunities for working with patients beginning at the early stages of research design all the way through to the communication of trial results post-approval. To assist with this, there are established standards, frameworks, and guidance for patient engagement in research and development processes. The development of clinical trial lay summaries was held up as an example of where patient input is crucial in determining what information from clinical study reports patients are interested in and how to effectively communicate trial results to them. Bahador went on to explain how patient engagement has led to improved study cycle times, better retention in studies, increased patient satisfaction and, ultimately, better health outcomes for patients. Regulatory bodies like the US Food and Drug Administration (FDA) and the UK’s National Health Service (NHS) are also now emphasising the importance of patient involvement in setting research priorities, identifying key endpoints, and designing trials. Community engagement initiatives such as developing culturally relevant resources, conducting surveys to gather feedback, and mobile education initiatives aimed at increasing awareness and understanding of clinical research were also highlighted as important tools for increasing patient involvement.

Patient engagement has led to improved study cycle times, better retention in studies, increased patient satisfaction and, ultimately, better health outcomes for patients.

Opportunities and best practices for patient involvement in publications

The final presentation in the session was given by McDougall, who provided a publisher’s perspective on best practices in patient involvement. He offered several insights, beginning with the observation that because patient involvement in publications offers many advantages for publishers, it is crucial they do not lose sight of patients’ diverse experiences and challenges during the process. Currently, there are 2 primary roles for patients in the publications landscape: peer reviewers and authors. Patients can contribute to peer review by ensuring plain language and accessibility, especially for language-oriented publications. Patients can also be involved as authors, but it is essential they fit authorship criteria and are provided with adequate guidance and support. Patient perspective articles or journals provide valuable qualitative information, particularly in areas with limited quantitative data; however, McDougall reiterated that guidance is needed to ensure patients understand their responsibilities, can avoid ethical issues, and feel empowered to be involved throughout the process. Other best practice approaches for involving patients include recognising diverse levels of experience and providing fair compensation.

Because patient involvement in publications offers many advantages for publishers, it is crucial they do not lose sight of patients’ diverse experiences and challenges during the process.

Guided poster tour

Plain Language Summaries was the theme for the guided poster tour on Day 3, with 4 featured posters:

• AI’s might vs human prowess in crafting plain language summaries
• Cracking the code: how discoverable are plain language summaries?
• Readability of plain language summaries (PLS): are they getting better?
• Standalone plain language summaries of publications: a 5-year trend analysis

Keynote: Generative AI: practical strategies to increase productivity

KEY TAKEAWAY

• Generative AI (GenAI) is changing the way we work and can dramatically increase productivity, but its effective adoption requires behavioural change.

Conor Grennan (NYU Stern School of Business), who delivered an interactive keynote session on GenAI, started by posing a question: given that the GenAI tool ChatGPT is accessible and has no learning curve, why is it difficult to master? The answer, he suggests, is that it requires behavioural change.

What is ChatGPT replacing?

ChatGPT reached 1 million users 3 days following its launch, much faster than streaming services such as Netflix and Spotify. However, Grennan explained that while it is obvious to our brains that Netflix replaces videos and Spotify replaces CDs, it is unclear what ChatGPT is replacing. He highlighted the need to “break down the paradigm that ChatGPT is the same as a search engine”, assumed because its interface resembles that of Google search.

It is obvious to our brains that Netflix replaces videos and Spotify replaces CDs; it is unclear what ChatGPT is replacing.

Focus on needs, not use cases

Grennan pointed out that the use of AI tools is already widespread (take spellcheckers, for example), but they are running in the background. He likened the potential of GenAI to that of electricity: although electricity is an integral part of everyday modern life, it is easiest to explain its benefits using specific examples, such as lightbulbs. So instead of considering use cases for GenAI, Grennan stressed the importance of considering what needs exist.

Perfect prompting

“Forget prompt engineering – just talk to ChatGPT like a human!” This was Grennan’s top tip at the start of his live demonstration of how ChatGPT can help with tasks such as:

• explaining something in different ways for different audiences, using the example prompt: “Can you explain immunotherapy to three different people, giving me a short script for each – the three people are: an MIT PhD in science, an elderly farmer and a 10-year-old obsessed with monster trucks”
• drafting emails
• coming up with creative ways to introduce new employees to company culture
• strategising (eg, identifying the steps involved in starting a new company).

“Forget prompt engineering – just talk to ChatGPT like a human!” – Conor Grennan

Solving the biggest problems

Grennan explained that while ChatGPT’s first answer to a question may be short and simple, further prompting can provide exactly the right information needed. Therefore, users need to go deeper, since continuing to ask about individual details will lead to better answers. To mitigate against AI ‘hallucinations’, Grennan advised double checking ChatGPT outputs, particularly when precision was important.

Double check everything if you need precision – ChatGPT is better as a reasoning tool than a knowledge tool.

The future intersection of medical affairs and publications – are you ready for it?

KEY TAKEAWAY

• A cross-functional working relationship between publications and medical affairs will be essential for navigating the rapidly changing publications landscape.

Gary Lyons (Avalere Health) presented an interesting and engaging session, which began with an emphasis on the increasingly important role that medical affairs plays in the delivery of content in what is now a rapidly evolving landscape. It was reasoned that the increased complexity of the current landscape is being driven by digital technology, the emergence of omnichannel strategy, and utilisation of modular content. During his presentation, Lyons covered the 4 key components on the path to engagement: audiences, content, channels, and capabilities.

Audiences

Lyons emphasised the importance of considering multiple audiences when developing a publication, including experts, specialists, communities, patients, and patient advocates. He explained that we should not expect the information to trickle down this cascade of potential audiences, but, instead, content should be developed to reach out to a broader audience.

How an audience prefers to receive content was also highlighted as a key consideration, as there has been an increase in demand for information to be delivered digitally. Despite this increase in demand, a digital divide exists between the preference for digital delivery and the actual availability of information and data via digital channels.

We should not expect the information to trickle down the cascade of potential audiences, but, instead, content should be developed to reach out to a broader audience.

Content

In the next part of the session, content was discussed, with an emphasis on the growing need for conciseness. To achieve this, Lyons recommended that digital features and enhanced publication content should be considered when possible.

Channels

Connecting the dots between different channels to create a journey of engagement should be a key aim in the development of all publications. It is therefore important to consider all content that is being created alongside a publication, such as training slide decks and enhanced publication content, and how these channels can be connected.

Connecting the dots between different channels to create a journey of engagement should be a key aim in the development of all publications.

Capabilities

Two key points were outlined in this section of the presentation: the growing need for modular content and the future role of AI in supporting publications. Modular content was described as a way of fragmenting content into smaller pieces that can be pre-approved and then used for future engagement. Thinking of ways to use content in a more fragmented way can help increase the speed and flexibility of future content development and delivery, especially when requested at short notice.

Lyons suggested that AI may have a supporting role to play in publication development, highlighting 3 specific points at which AI could be utilised:

• kick off calls, to produce a summary of meeting discussions
• post-draft development, to help with data checks, CONSORT checklists, and proofreading
• post-submission, to assist with creation of enhanced publication content.

To navigate the ever-changing and increasingly complex publications landscape, there will be a need to embrace omnichannel planning, utilise modular content, and find ways to use AI to help drive content creation and improve efficiency.

Towards patient-friendly electronic product information (ePI)

KEY TAKEAWAY

• Current product information (PI) is not fit for purpose – moving to ePI provides an opportunity to link to patient-friendly materials providing medical information in plain language.

Panellists Chris Winchester (Oxford PharmaGenesis), Trishna Bharadia (patient advocate, The Spark Global), Behtash Bahador (CISCRP), Catherine Skobe (Pfizer), and Christopher Rains (CPR BioPharma Consulting) shared their thoughts on the journey towards patient-friendly ePI.

The evolution of product information

Winchester kicked off the session by outlining the journey towards digital transformation of PI. Although paper PI is still very much alive, it is widely unread, and recent years have seen a transition away from the paper format. Winchester elaborated, explaining how we are currently in the PDF PI era and edging towards the digital era, where PI could be tailored towards indication, patient information preferences, and the background of the reader. The clear shift in the FDA’s perspective on PI since the first half of the 20^th century signals that what was once considered a back-covering exercise is now regarded as an integral part of motivating better health outcomes.

Are current product information leaflets fit for purpose?

Discussing the evolving perspective on ePI and the role of publication professionals, Bharadia noted that PI leaflets have made some progress towards becoming patient friendly in the UK, but in other countries, such as the US, they are far from being suitable. She stressed the importance of the patient as the intended audience and that the current ‘one size fits all’ approach is suboptimal, given the variation in health literacy among patients.

What is driving the digitisation of product information?

Rains explained that, as it stands in the EU, ePI must be identical to paper PI, and paper PI must also be provided. Consequently, each year, 500,000 tonnes of carbon dioxide and 11 billion gallons of water are needed to produce the 100 billion paper PI leaflets printed.

Bahador stated that the high appetite for plain language materials and increased patient engagement is certainly a driver in the digitisation of PI. Moreover, results from a recent Global Perceptions and Insights Survey revealed that sharing more information in understandable terms drives trust and matters to patients.

Each year, 500,000 tonnes of carbon dioxide and 11 billion gallons of water are needed to produce the 100 billion paper PI leaflets printed.

How can ePI best meet the needs of patients and other audiences?

Suggestions for how ePI can best meet patients’ needs from Skobe and Bharadia included:

• ePIs should contain links to publications and, most importantly, plain language summaries. This can facilitate understanding of scientific jargon, reaping benefits such as increased medication compliance.
• ePI development should involve the intended audience, including patients and patient organisations, such as the Patient Information Forum.

How can publications and medical communications professionals get involved in optimising ePI?

Rains urged publications professionals to work closely with cross-functional teams, including regulatory/labelling colleagues, in the journey towards optimised ePI. Publication teams are already creating content in different formats for different audiences (eg, plain language summaries of publication). Linking these materials to product labels offers the perfect opportunity to see them used in settings beyond journal publications.

Wrapping up the discussion, the panel issued a call to action, suggesting publications professionals leverage the momentum behind the current focus on patient-centric materials to ensure regulatory teams are aware of the patient-centric materials they produce.

Publications professionals can leverage the momentum behind the current focus on patient-centric materials to ensure regulatory teams are aware of the patient-centric materials they produce.

Hot topics and meeting highlights

Bringing the 20^th Anniversary Meeting of ISMPP to a close, Jenny Ghith (Pfizer), Tomas Rees (Oxford PharmaGenesis), Jason Gardner (Real Chemistry), Richard Davis (ApotheCom), and Rob Matheis (President and CEO, ISMPP) reflected on the hottest topics and highlights from the meeting.

Storytelling

The panel promoted the important role of medical communications professionals as storytellers, emphasising the need for different storytelling approaches for different outputs. Ghith saw the role of medical writers as ‘inventors’ with the task of bridging the gap between different stakeholders and leveraging storytelling across teams.

“We are all storytellers, but we just maybe don’t realise it. Everything we do is about telling stories.” – Tomas Rees

Artificial intelligence

Ghith described how we have passed the initial ‘hype’ phase for AI applications in medical communications and now find ourselves in the ‘trough of disillusionment’, where we will meet and take on the challenges and limitations of AI after the initial period of excitement. For Rees and Gardner, a key take-home message was that human input was essential for successful implementation of AI tools. While AI can analyse data and identify patterns, it cannot provide insight on the key question of why the data are what they are. Matheis felt that connecting and feeding AI systems with appropriate context would ensure relevant and usable outputs, while Davis reiterated the importance of understanding the distinction between GenAI and other (non-generative) types of AI.

AI is a tool that can enhance human intelligence, not replace it.

Patients

A key theme emerging from this year’s sessions on patient involvement in medical communications was that patients’ voices must be integrated into discussion about AI, ensuring their concerns and needs are addressed throughout the process. Gardner stressed the importance of non-traditional outcomes to make sure the patient voice is incorporated into medical communications. Reflecting on the session on ePI, Rees thought that there was an opportunity to address the accessibility of product information, using ePI tools to generate more patient-friendly materials. Considering how often patients are required to make active healthcare decisions, Matheis felt there was a need to be mindful of what information was available to patients and how it was presented to them – and this all comes back to a need for effective storytelling.

“We have to be mindful that as we put medical information out there, patients are making decisions for themselves – they have different needs and different ways of processing information – it all comes full circle to storytelling.” – Rob Matheis

Publishing metrics and insights

Rees finished with the hot topic of publishing metrics and insights, noting the increasing interest in metrics due to the need to show the value of what we do as medical publications professionals. He thought that current metrics did not always capture a publication’s true impact, so he was encouraged by the level and direction of discussions surrounding metrics and excited by the progress to be made by the ISMPP Social Media & Web-based Metrics Committee on metrics in the near future.

Every publication has its own goal, so there’s a need for increased sophistication about how we measure achievement of that goal.

Why not also read the summaries of Day 1 and 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, an independent medical writing agency led by experienced editorial team members, and supported by MSc and/or PhD-educated writers.

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Patients are regularly turning to the internet and social media to gain medical information or share their experiences, which has led to the relatively new concept of patient influencers. Following her participation at the 19^th Annual Meeting of the International Society for Medical Publication Professionals (ISMPP), The Publication Plan spoke to Amrita Bhowmick, Chief Strategy Officer at Health Union and Adjunct Assistant Professor at UNC Gillings School of Global Public Health, to learn about the role of patient influencers and online communities and to find out how digital platforms can be used to increase patient engagement.

Health Union is a digital health company that develops condition-specific online communities. Could you tell us a bit more about the online community model at Health Union and how you went about developing it? What were the key considerations and the main challenges you encountered?

“At its core, our community model is focused on “meeting people where they are” in a way that provides information, validation, and support. Unlike many initiatives in healthcare, we aren’t looking to change patient behaviour – rather to provide social support, which is proven to have a positive impact on patient engagement, morbidity, and mortality. Our model puts patient leaders (or “patient influencers”) at the core of the community – ensuring that the communities are truly built for patients by patients.

Moderation is an essential ingredient for the communities’ success – our moderators have extensive training to ensure they are prepared to handle whatever may come their way in a clear, consistent, and transparent manner. This is an area of continuous improvement to ensure we are prepared to adapt as quickly as technology and online behaviours evolve. Maintaining a safe space for our members while encouraging engagement and transparency requires a very fine balance.”

Are you seeing an increase in the use of online health communities? Why are they such an important resource for patients?

“The internet and social media continue to play a growing role in how people engage with their health.”

“The activity level in our communities has increased consistently over time across all conditions. This is not surprising given the macro level data we’ve seen – the internet and social media continue to play a growing role in how people engage with their health. We know that 5% of all Google searches are now health related and one survey found that 60% of Gen Z respondents said social media influencers impacted their mental health decisions.”

At the Annual Meeting of ISMPP 2023 you talked about the value of patient engagement in health research. What do you think are the main benefits of involving patients throughout the drug development process?

“There are so many benefits to including patients in the drug development process –ranging from identifying a target product profile that truly meets the needs of patients to developing clinical trials with improved retention rates. Patients can also help ensure communications are clear and compelling, and can help with the trial recruitment process (particularly in the areas of communication, education, and reach).”

What more could be done by pharmaceutical companies, publishers, or others working within medical communications to encourage patient engagement?

“Engaging patients early in the process is the best way to truly drive patient engagement – ensuring that patient considerations are accounted for in every step of the process versus trying to retrofit to patient needs on the backend. Small changes that are easy to make up front (to patient-friendly language, for instance) can have a very meaningful impact on outcomes. These changes are often far more difficult to make later in the process.”

Plain language summaries are sometimes included in medical publications – how important do you think these are in disseminating information to patients?

“The more we can do to make health information accessible to patients, the better! Having patient leaders promote and explain these plain language summaries could further increase the reach and impact of the content.”

Do you think social media should be more widely used as a means of sharing medical information directly with patients? What are the potential challenges or risks involved in doing so and how should these be managed?

“Social media continues to play a critical role in how individuals consume content, including health information. Our “meet people where they are” model focuses on meeting people where they are in their health journey, but also focuses on meeting people where they are physically – this includes social media platforms to ensure we are as accessible as possible for our members.

Providing information in a clear and transparent way that is truly intended to engage with patients is the most effective way to encourage positive dialogue – authenticity and a willingness to engage are critical ingredients for success. However, it is important to be prepared for this engagement – plan for the questions/comments that may arise and have a shared agreement for how to handle these situations in a transparent manner.”

“Providing information in a clear and transparent way that is truly intended to engage with patients is the most effective way to encourage positive dialogue.”

The concept of “patient influencers” is relatively new. Could you explain what is meant by this term and describe the positive impact patient influencers can have within medical communications? What are the considerations regarding potential misinformation?

“While the concept of patient influencers is new, the idea of community leaders is not. For instance, public health officials have worked with community leaders (for example barbershops, beauty parlours, places of worship) to support educational initiatives for decades. Community leaders have established relationships with their constituents that are highly effective in driving effective communication and engagement.

Patient influencers can be viewed as the online version of these community leaders – respected leaders who build connections with their followers via their personal story and experiences. Our research shows that patient influencers are highly effective in communicating health information and can even increase self-efficacy.

Patient influencers typically distinguish themselves from the broader “influencer” industry as their focus is health- or disease state-specific. Our research shows that these individuals, who are aware of the misinformation pitfalls, value responsible communication and are very cautious not to provide medical advice. Providing clear guidance and training regarding a particular health program is the best way to ensure partners consistently communicate in the most accurate manner.”

How could technology play a bigger role or be better leveraged within the pharmaceutical or medical communications industries to encourage patient engagement or to communicate more effectively with patients?

 “Technology allows us to reach and engage with patients at a scale that has never been possible before.”

“Technology allows us to reach and engage with patients at a scale that has never been possible before. Leveraging the available tools can also help the healthcare industry identify and reach patients in a highly targeted manner – at scale. Engaging patients, or patient influencers, as part of the process for drug development and/or health communications will further increase the likelihood of success by ensuring the patient perspective is consistently in focus.”

Amrita Bhowmick is Chief Strategy Officer at Health Union and Adjunct Assistant Professor at UNC Gillings School of Global Public Health.  Amrita can be contacted via amritab@email.unc.edu or LinkedIn.

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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 1^st, 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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Recorded 19 April 2023 as a MedComms Networking webinar. Produced by NetworkPharma.tv

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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 4^th 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 3^rd revolution (the development of the internet), which was based on a system of rules, the 4^th 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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