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

• Health misinformation is a serious issue linked to low health literacy, with spread exacerbated by social media and AI.
• Pharmaceutical companies can help combat health misinformation through engaging with patients to develop accessible materials, and reaching audiences through the digital channels they use.

The spread of misinformation can have a serious impact on health and weaken public confidence in healthcare professionals and the pharmaceutical industry. In a recent PMLiVE article, Catherine Devaney explores how pharmaceutical companies can help combat the rapid spread of health misinformation online.

Devaney highlights that a lack of trust in institutions, healthcare systems, and governments is driving the public away from traditional sources of health information. In addition, “misinformation is easier to understand for many people”, with ~40% of working age adults in the UK unable to understand everyday health information due to low levels of health literacy. Health misinformation spreads rapidly on social media and through the use of AI, and often gains traction by appealing to emotions like fear, hope, or scepticism.

“Health communicators must proactively build trust by making information available in an accessible and engaging way.”

Devaney advises that health communicators must proactively build trust by making information available in an accessible and engaging way. She outlines key actions that health communicators in pharma can take, including:

• fostering relationships between key stakeholders, including healthcare professionals, scientists, and patient advocates, to promote transparency and trust
• gaining accreditation for evidence-based, plain language, and accessible materials, such as the Patient Information Forum (PIF) TICK certification
• engaging with patients who will use the information during the development process, to learn from their unique insights and ensure that the content is tailored to their needs
• monitoring digital platforms proactively for misinformation trends and developing a plan to engage with audiences via the same channels.

Devaney urges the pharmaceutical industry to use their expertise and resources to join the fight against misinformation, making a positive impact on health inequities.

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KEY TAKEAWAYS

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

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

Publication extenders improve article metrics

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

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

Audience preferences for publication extenders vary

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

Uptake of publication extenders could be improved

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

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

Looking to the future

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

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KEY TAKEAWAYS

• Confusing the meaning of ‘significance’ in scientific research can lead to misinterpretation of findings.
• Differentiating between statistical significance and scientific importance is key when communicating scientific research.

Statistical significance and scientific importance are key aspects when communicating scientific research, but are often confused. This can prompt misleading interpretations of findings. An article by Professor Jane E Miller in Open Access Government explores the issue and provides guidance on improving clarity in scientific communication.

Statistical significance versus scientific importance

Prof. Miller suggests that the confusion of these terms is likely due to differences in the meaning of ‘significance’ in statistics versus everyday use, where it can mean ‘big’ or ‘important’. ‘Statistical significance’ means that a statistical test (measured by a P value) found evidence of an effect based on sample data, ie, that the result is unlikely to be due to random chance. Going further, Prof. Miller notes that for a result to have ‘scientific significance’, it must have real-world applications, such as clinical or educational relevance, or be useful for informing a decision, such as the design of an intervention.

How can scientific writers effectively communicate the significance of their results?

Prof. Miller suggests that scientific writers should explain scientific importance before statistical significance, to ensure that readers consider all aspects. Whether the significance being described is scientific or statistical should always be clarified.

“Prof. Miller suggests that scientific writers should explain scientific importance before statistical significance, to ensure that readers consider all aspects.”

Prof. Miller outlines some key dimensions to include when communicating scientific importance:

• the size and direction (eg, “positive” or “inverse”) of the effect
• the study sample (“when, where, who”), and if the results of the study can be generalised to the population
• other factors that may explain the association (ie, confounding)
• whether causality can be inferred from the research
• whether the observed outcomes are sustainable.

Next, communicating statistical significance must start with identifying the target audience. Prof. Miller advises paraphrasing ‘statistical significance’ and explaining the likelihood of the observed results occurring by chance when writing for lay audiences, and considering replacing ‘statistically significant’ with ‘statistically discernible’ for statistically trained audiences.

Prof. Miller concludes that by applying these principles, statistical communication in science can be improved.

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KEY TAKEAWAYS

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

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

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

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

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

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

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

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KEY TAKEAWAYS

• From January 2025, The BMJ is offering £50 or a 12-month online subscription to a BMJ journal for patients and members of the public who review an article.
• The BMJ hopes the policy will help to expand and diversify participation from its patient and public reviewers.

Patients, advocates, and public reviewers play an important role in the reporting of medical research by offering their lived experiences and perspectives. Starting from January 2025, The BMJ is complementing the 12-month BMJ online subscription given to all reviewers, adding £50 or a 12-month online subscription to any BMJ journal for patient and public reviewers.

The BMJ introduced patient and public reviews in 2014 and have accumulated over 2,600 patient and public reviews across various article types. These help to evaluate:

• the relevance and importance of research questions
• the appropriateness of outcome measures
• how patient and public involvement is reported.

The new BMJ policy aligns with National Institute for Health and Care Research (NIHR) guidelines on payments for public involvement in research and aims to:

• compensate the time and effort of patient and public reviewers
• expand and diversify patient reviewer participation.

Expanding representation in patient and public reviews

While The BMJ has over 1,000 engaged patient and public reviewers from over 20 countries, most reviews in the past decade were conducted by women based in the UK and US. The experiences of patient reviewers for The BMJ are positive, and their feedback has helped develop further guidance and training. Feedback from current reviewers and an international patient and public advisory panel also underpins the latest change in compensation.

The BMJ hopes that remuneration will diversify participation in reviews and increase representation.

The BMJ hopes that remuneration will diversify participation in reviews and increase representation across:

• geographic locations
• ethnicities
• genders
• areas of lived patient experiences.

How will this change the future of peer review?

The BMJ announcement acknowledges the value of patient perspectives in medical research, sitting alongside other initiatives to amplify patient engagement in scientific publications and address barriers to participation. However, broader discussions persist around whether clinical peer reviewers should be compensated and how to sustainably improve the peer review process while maintaining quality and integrity. The BMJ plan to monitor the impact of the new policy – we look forward to reading their updates.

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The 21^st Annual Meeting of ISMPP takes place May 12 – May 14 at the Grand Hyatt in Washington, D.C.

 REGISTER TODAY!
Registration is open until April 25, 2025

The theme for ISMPP’s milestone 21^st Annual Meeting is Diversity and Innovation: In Concert. This meeting gathers diverse professionals to inspire creativity, foster innovation, and advance medical communications for a more inclusive and dynamic future.

Don’t miss the premier medical communications and medical publications conference of 2025!

Topics covered include:

• Artificial Intelligence
• Omnichannel
• Plain Language Summaries
• Best Practices
• Data Visualization
• Publication Planning
• Digital Extenders
• Metrics and Analytics

9 Educational Workshop Offerings – 4 NEW Topics this Year! For both newer professionals and experienced professionals. Spaces are limited so sign up today!

Keynote Speakers, Member Research Posters/Oral Presentations, Exhibitors, Receptions, Networking, Awards, and more!

Company Team Discount/Champion Sponsorship for 10 Team Members or More!

Please contact exh-spon@ismpp.org for a discount code.

VIEW the meeting agenda. REGISTER TODAY!
Learn about ISMPP at: www.ismpp.org

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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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KEY TAKEAWAYS 

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

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

How discoverable are PLSPs?

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

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

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

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

Integrate patients in PLSP development

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

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

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

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

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