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

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

Summaries of the morning of Day 2

Tom Drake (Global Outcomes Group, Inc.) welcomed attendees to Day 2 of the meeting, which opened with a keynote address.

Keynote: Four crises in science and communication

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KEY TAKEAWAYS

• Crises exist in science and communication but alternative research funding models, a culture of openness, the use of simple language, and artificial intelligence all provide grounds for optimism.

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How well is science working? How can doctors and other medical professionals communicate more clearly with their patients and the public? How do we make sense of artificial intelligence (AI)? These were some of the topics explored by Derek Thompson (The Atlantic and Plain English with Derek Thompson podcast).

Crisis 1: The meta science question: what if we had no idea how well science is working?

Although the National Institutes of Health and National Science Foundation provide US $50 billion in funding every year, the time-consuming application process and infamously slow decisions have several negative consequences. Scientists report that they spend 20–40% of their time on grant applications rather than on science itself. This time commitment, together with the centralisation of funding, may promote conservatism and discourage much needed experimentation. Thompson suggested that initiatives such as Fast Grants, set up in response to the COVID-19 pandemic to provide rapid funding for research, could help to get interesting scientific ideas off the ground.

Crisis 2: The patient involvement question: how much feedback from patients and the public is really useful?

Thompson stated that more public conversation around science does not automatically create more wisdom: it also creates more scrutiny, debate, and conspiracy. Thompson cited high vaccine hesitancy in the US during the COVID-19 pandemic, despite the country’s key role in advancing mRNA technology. He noted that “scientists don’t get to choose the way their work is discussed; they don’t pick the terms for debate”. Although there is no alternative to openness and honesty in science, Thompson believes we need to be clear about the costs of openness but not be afraid of it.

Crisis 3: The clarity question: how can doctors and other medical professionals communicate more clearly with their patients and the public?

Thompson recommended that in this climate of openness, scientists and science communicators speak plainly and honestly to combat conspiracy. Complicated language and jargon may offer writers and speakers the illusion of sophistication but can instead make them appear less intelligent or as if they are overcompensating. Thompson asserted that using short words to express complicated truths without losing nuance is challenging, but it is our job.

Thompson recommended that in this climate of openness, scientists and science communicators speak plainly and honestly to combat conspiracy.

Crisis 4: The AI question

The final crisis Thompson highlighted relates to how we make sense of the “extraordinarily strange and wondrous and dangerous and thrilling and nerve-wracking” developments in AI. We may be entering an age in which flawed papers written by AI are difficult for peer reviewers to catch, but Thompson noted we should remain optimistic as there is great potential in generative AI tools for scientific communicators. Indeed, Thompson shared some impressive examples where ChatGPT explained new or complicated ideas using familiar metaphors: a valuable strategy for effective communication.

ChatGPT and BardAI: the dawn of generative AI in medical communications

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KEY TAKEAWAYS

• Generative AI has the potential to be a useful tool in medical communications, particularly in creating plain language summaries. Transparency, validation, and proper acknowledgement are crucial.

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For the second session of the day, Richard Davis (ApotheCom) led an engaging discussion on the potential role of generative AI in the medical communications sphere, with Josh Nicholson (scite.ai), Angela Cochran (American Society of Clinical Oncology [ASCO]), Joanne Walker (Becaris Publishing), and the day’s keynote speaker composing the panel.

AI as a tool for PLS

The panel discussed the challenges of distilling complex ideas into plain language and the potential power and pitfalls of AI tools in creating plain language summaries (PLS). Exact prompts must be used to achieve the right output, and ‘testing’ AI through providing more complex prompts may help to achieve the desired output. The more complex the prompt, the more parameters the AI tool has to work with, although Thompson emphasised that AI tools should be considered a smart research assistant rather than a guide. Walker suggested publishers should give authors guidance on prompts for AI tools to help develop good quality PLS, aiming to level the playing field. Cochran noted the need to ask the right questions when interacting with AI tools, voicing concerns that we may be inadequately prepared to interact with these tools at this moment in time.

Publishers should give authors guidance on prompts for AI tools to help develop good quality PLS.

How close is the answer AI gives you to the published research?

Thompson noted that sandwiching (combining a good prompt with back-end research) can help distinguish the useful parts of AI outputs. He also suggested that ChatGPT can help to frame questions, which may be useful when discussing a researcher’s work in an unfamiliar therapy area. Another strength of AI tools is that they are good at mapping one body of knowledge with another. Thompson shared the example of asking an AI tool to summarise complex information so that it could be understood by a 12-year-old.

These tools are here, and people are using them, so how do we use them transparently?

The panellists discussed the transparency of using AI tools in medical communications. Walker noted that, at this time, publishers generally agree that AI tools cannot be authors, but if they are used, they must be acknowledged. Publishers need to advise authors on how to use AI tools appropriately. Cochran acknowledged that at ASCO there is enthusiasm for using AI tools, particularly among authors whose first language is not English. The use of AI tools may also remove barriers for fatigued clinicians, allowing them to focus on clinical practice. Conversely, there are concerns that AI-generated content is not original, the systems need to be validated, and there is a need to evaluate whether the information can be trusted. In terms of disclosing AI use in a manuscript, Cochran emphasised the need for transparency and suggested disclosing:

• the AI tool used and the version
• information about what the AI tool was trained on
• the prompts used
• any potential sources of bias.

Guidelines ought to be developed to ensure transparency; however, Cochran noted that this can be challenging given the speed of change. Cochran was adamant that AI tools should never be used for opinion pieces or editorials, as publishers expect these to be original commentary from contributors. She also provided a worrisome example of a peer reviewer using ChatGPT. The use of AI was identified when the references suggested for inclusion in the manuscript were found to be invalid, AI-generated references. Walker provided a further example where she had experimented with ChatGPT to select peer reviewers for a manuscript, but the names provided were all AI generated.

The panel discussed several areas where AI tools could be beneficial:

• reducing time spent on grant applications
• generating hypotheses
• supporting with initial scans of the literature
• summarising research in a particular therapy area quickly and effectively.

Despite the potential benefits, the panel emphasised the limitation that much of the published literature currently sits behind paywalls, limiting the data sources AI tools can be trained on.

Q&A session

Some interesting points also arose during the Q&A following the session:

• When providing commentary, AI tools could help challenge strongly held author perspectives, encouraging them to recognise and evaluate the perspectives of others. They could also be used to help overcome writer’s block and generate ideas.
• There is already a need to validate the quality of information we access in journal articles; however, these issues will be accelerated and accentuated with the use of AI. Systems to fact check and verify information must be built to counter misinformation.
• Prompt engineering will be critical to improve the accuracy of AI-generated content.

Member research oral presentations

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KEY TAKEAWAYS

• A study of 313 healthcare professionals (HCPs) found they spent little time reading medical publications. Omnichannel approaches—with video particularly effective—are key to reaching HCPs.
• Patient-experience publications bring significant value to health technology assessments and are increasingly common, but patient authorship on these publications is shockingly low.
• Real world data are not effectively reaching clinical audiences. Medical communications professionals should leverage audio and visual tools to improve dissemination.

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Moderating, Amy Calamari (Gilead) explained that this year’s meeting saw a record-breaking 85 abstract submissions, and that the 3 chosen for presentation during this session were selected based on originality and their potential to improve practice.

What do doctors really do on the internet?

Gary Burd (IPG Health Medical Communications) presented a study investigating how 313 US healthcare professionals (HCPs) accessed medical information online over a 4-week period, using a passive digital tracking tool with full consent. Most of the HCPs were neurologists with an average of 25 years in practice.

The HCPs often had multiple windows/tabs open simultaneously on their devices, leading to 29 hours’ recorded daily activity on average. Of this, an average of 4 hours 39 minutes was spent on medical content and 24 hours 6 minutes was spent on everything else. HCPs spent minimal time on medical publications, averaging 12 minutes per day, with 1 minute 38 seconds per engagement. Burd suggested HCPs are merely reading abstracts to determine relevance. HCPs spent more time on pharma websites, although they typically did not navigate beyond the homepage and may have been accessing prescribing or safety information. YouTube was the most active platform, with oncologists and some neurologists watching long-form videos.

HCPs spent minimal time on medical publications, averaging 12 minutes per day, with 1 minute 38 seconds per engagement.

Burd concluded that HCPs typically engage with medical publications infrequently, with findings suggesting that medical communications professionals should consider utilising specific platforms to engage with HCPs, for example, YouTube to target oncologists and neurologists and social media for primary care physicians. To best engage with HCPs, an omnichannel approach is key.

Do patient-experience publications have authors with patient experience?

Dawn Lobban (Envision Pharma Group) presented the results of a study that looked to quantify patient-experience publications and patient authorship, compare accessibility of publications with and without patient authorship, and evaluate the alignment of patient authorship with health technology assessment (HTA) patient involvement values.

Lobban defined patients as “people living with health conditions, caregivers, families, patient advocates, and advocacy organisations” and explained the purpose of patient-experience publications was to capture patient perspectives, hear the patient voice, and understand patients’ needs and priorities, rather than report results from clinical studies. As such, patients should be involved at every stage of study design, planning, analysis, and publication. Lobban noted the many guidelines around patient involvement in HTA, and that studies should adhere to the core values of relevance, fairness, equity, legitimacy, and capacity building.

For this study, PubMed was searched to identify publications between 1 January 1900 and 31 December 2022. Patient-experience publications were identified through search terms such as “patient journey”, “patient perspectives”, and “patient experience”, and patient authorship was established using search terms typical of patient author bylines. The study identified a doubling of patient-experience publications in the last 5 years, expected given the increased interest in patient involvement. Shockingly, less than 1% of patient-experience publications had a patient author; those that did were typically in mental health. While patient authorship is increasing, this is from a very low baseline. Publications with a patient author were significantly more likely to be open access or include a PLS, although few did.

The study identified a doubling of patient experience publications in the last 5 years…Shockingly, less than 1% of patient-experience publications had a patient author.

In terms of alignment with HTA values, the group agreed that patient authorship does reflect the values of HTA assessment:

• Relevance: input from patients provides insights that cannot be gained from HCPs’ interpretation of what it is like to live with a condition.
• Fairness: when patients have been involved in designing and planning a study, they have the right to be able to co-author the research.
• Equity: it is important to consider including diverse patient voices in research and look at equity issues around the distribution of healthcare.
• Legitimacy: including the patient voice adds credibility to decision making.
• Building capacity: patients are keen to be involved in research, so it is a natural progression to include them as authors with a voice in the scientific literature.

Lobban concluded that patient-experience publications rarely include patient authors, although this is increasing. As medical communications professionals, we should think about who our audience is and how we can improve accessibility for non-specialist authors.

Is real world evidence reaching clinicians? A target audience analysis of publications and congress presentations

Matthew Clasen (Syneos Health) began his presentation defining real world evidence (RWE) as the body of evidence generated from various sources of real world, not clinical trial, data. RWE can complement registrational trial data and lead to a richer body of evidence to inform decision making, with FDA guidance for industry highlighting its importance.

The study Clasen presented aimed to determine the primary target audience for RWE journal articles and congress presentations. Real-world data (RWD) publications from 2008–2022 in Embase were analysed to determine the target audience for RWE in the top 10 congresses and journals, RWD sources in clinical publications over time, and RWD publications in the top 10 clinical journals by impact factor.

Around 41,000 RWE publications were identified, including 22,000 journal articles and 13,000 congress presentations. Clasen highlighted the increasing volume of RWE publications over the past 15 years, with the majority published in the last 5 years. Across the top 10 congresses, only 39% of the 5,116 RWD congress abstracts reached a clinical audience (rather than healthcare policy decision makers, public health professionals and pharmacoepidemiologists). Similarly, across the top 10 journals, only 23% of the 2,677 RWD journal articles reached a clinical audience. RWD sources have evolved over time, with a growing proportion of registry and health insurance claims data being used in RWE journal articles in recent years. RWD was found to be largely absent from  clinical journals with the highest impact factor.

Clasen concluded that clinicians are not receiving RWE through publications. Barriers must be identified and removed to realise the full potential of RWD, such as:

• lack of familiarity with RWE/RWD, its role, and application to clinical practice
• inadequate knowledge of RWD methodology
• perceived importance of registrational trial data compared with RWD
• that RWD are evolving, requiring clinicians to keep up with trends.

Effective communication can help mitigate these barriers. As medical communications professionals, we should look to leverage the use of talking papers, infographics, graphical abstracts, and video abstracts to extend the communication of RWD to more clinicians.

Clinicians are not receiving RWE through publications; barriers must be identified and removed to realise the full potential of RWD.

GPP and me

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KEY TAKEAWAYS

• Following the 2022 release of the latest Good Publication Practice guidelines, patient authorship and reimbursement remain key topics of discussion.

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In this engaging interactive session, Lisa DeTora (Hofstra University), Faith DiBiasi (AstraZeneca), Eline Hanekamp (Excerpta Medica), Dikran Toroser (Merck), and Laura Dormer (Becaris Publishing) discussed the implementation of the Good Publication Practice  (GPP) 2022 guidelines. After a brief overview of the guidelines, results of a survey developed by the GPP authors were presented. Most respondents reported they were either fully aligned with GPP 2022 or expected to fully adopt the guidance within the next 6–12 months. The inclusion of patients, either in publication planning or as authors, was highlighted most frequently as the part of the guidelines still being investigated by organisations. Topics of particular interest identified through open-ended survey questions were discussed for the remainder of the session.

GPP beyond Europe and the US

The panel highlighted that there was strong representation from the Asia–Pacific region on the GPP steering committee and that a Chinese translation of GPP 2022 is now available. A Japanese translation is also in development.

Compliance

The panel emphasised that GPP is guidance rather than regulation or law. The extent to which legal and compliance teams will incorporate GPP will largely depend on each organisation’s structure and risk tolerance.

Payments and reimbursement

The panel advised that payment of patient authors is still a grey area and is complicated by regional differences. It was noted that HCPs can receive payment for consultancy roles rather than directly for authorship, and that these same rules will also apply to patients. Transparent reporting is important: guidance on the need to disclose relevant financial payments should be provided in advance.

Payment of patient authors is still a grey area and is complicated by regional differences… Transparent reporting is important: guidance on the need to disclose relevant financial payments should be provided in advance.

Social media

The panel noted that social media compliance is not part of the role of the publication professional; however, guidance on social media use is being updated regularly, and it can be difficult to navigate complex rules that may differ across regions and therapy areas.

Authorship

Author non-responsiveness is an issue affecting publication professionals, and the panel provided some guidance on managing this, including setting expectations at the outset, the importance of clear communication, and potentially seeking support from the author’s administrative team.

The importance of patient authors is increasingly recognised, and patients are often enthusiastic and passionate about becoming authors. To best involve patient authors, the panel advised planning well in advance and seeking support from patient advisory groups, which can be identified through sources like diseaseinfosearch.org. The panel also highlighted several sessions from Day 1 about the role of patients as authors. During the Q&A following the session, the panel discussed the potential conflict of interest if a patient receiving study treatment also acted as an author, concluding that trial participation (as well as other contributions, such as to study design) should be disclosed, but this does not preclude authorship.

AI

The panel recommended caution when using AI in medical publishing. They highlighted the World Association of Medical Editors recent recommendations that chatbots should not be included as authors and that authors must be transparent about chatbot use. Putting company proprietary information into an AI tool can also pose a compliance issue, and how AI can be harnessed as a useful and trustworthy tool remains up for debate.

Enhancing engagement

Many publishers are keen to discuss how to improve engagement with authors and pharmaceutical companies, but time and space is needed to do this effectively. Setting a good example for enhanced engagement is key, and demonstrating the benefits will encourage others to follow.

GPP and patients: guiding patient partnerships in publications

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KEY TAKEAWAYS

• The Good Publication Practice 2022 guidelines have a strong patient focus: this session shared experiences of patients adding value to the publications process and recommendations for working with patient authors.

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The next session continued the focus on GPP 2022, with Lobban introducing the session by highlighting that the recommendations in this iteration of the guidelines have been transformative with regards to patient involvement in medical publications. However, a live poll demonstrated that most attendees had not yet partnered with patients in publications, indicating that more needs to be done to make this a reality. Case studies describing how patients can add value to the publications process were then presented.

Patient Publications Collaborative Board

Catherine Skobe (Pfizer) described the Patient Publications Collaborative Board that Pfizer has established in order to develop long-term relationships with patient advocates and to ensure that patients are actively engaged throughout the publication process. Achievements so far include:

• development of patient materials in plain language, including an infographic in the welcome kit
• successfully voicing the case for open access publications at Pfizer
• giving presentations at external meetings in 2022, such as Patient as Partners Europe and the DIA Medical Affairs and Scientific Communications Forum.

A 3-year plan has also been developed, with objectives including raising awareness of the board, establishing a database of current and potential patient authors, and involving patients in the vendor evaluation process. Skobe concluded by acknowledging that setting up similar initiatives may be challenging for smaller companies with fewer resources than Pfizer, but hosting a webinar with patients is one simple option for introducing patient collaborations to an organisation.

Practical considerations for working with patient authors

Dakota Fisher-Vance (BioCryst Pharmaceuticals), who has personal experience as a patient author, then looked at practical considerations for engaging patients as authors. Fisher-Vance highlighted that not all patients are the same in terms of their expertise and knowledge, but they can collectively bring a wide range of experiences and perspectives to the publication process. Although patient authors must meet the International Committee of Medical Journal Editors (ICMJE) authorship criteria, this can occur through multiple avenues, such as helping to design patient-centric studies and identifying and prioritising the parts of a publication that are relevant to patients.

Next, Fisher-Vance highlighted some sources for identifying potential patient authors, such as:

• in-house patient initiatives
• patient advocacy groups and patient networks
• patient engagement vendors
• patient authorship searches
• social media
• conferences, webinars, and meetings
• word of mouth recommendations.

Fisher-Vance noted it is important to be aware that patient authors require a unique approach, taking various factors into account, including:

• respect for varied levels of expertise and scientific literacy
• training in the peer review process
• flexibility of working
• appropriate compensation.

Not all patients are the same in terms of their expertise and knowledge, but they can collectively bring a wide range of experiences and perspectives to the publication process.

Developing PLS

The GPP guidelines and publications community all acknowledge the need for high-quality PLS to increase understanding and knowledge, reduce misinformation, communicate research, and drive inclusivity, empowerment, and trust among the broader HCP and lay communities. Indeed, a live poll during the session showed most of the audience had been involved in developing PLS for journal articles and congresses, as well as standalone PLS. However, companies need to establish consistent processes to simplify PLS development and ensure that the content is relevant to the audience. With this objective in mind, Sonia Schweers (Bristol Myers Squibb) concluded the session looking at how their company has implemented PLS standards. Initially, PLS were developed as and when a journal or congress allowed them, but there were no set templates or procedures, and legal approval was given case-by-case. A pilot PLS implementation phase was conducted to establish uniform processes, with key steps including:

• identifying the target audience, which could potentially include payors, time-poor specialists or generalists, allied HCPs, and patients and carers
• determining which publication should have a PLS
• finding the right agency partner
• developing an enduring implementation package with annotated templates and checklists to ensure consistency
• partnering with expert patient panel reviewers to gain feedback on how easy the PLS was to read.

“What’s in a name?” The power of language and terminology

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KEY TAKEAWAYS

• Using common language is key for effective communication with patients and caregivers.

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This session, focusing on the power of words, was introduced by Sarah Griffiths (Oxford PharmaGenesis) and kicked off with an audience poll on communication with patients. Many attendees were comfortable or very comfortable speaking with or about patients (61%) but almost never engaged with patients to inform content (93%). Over half (57%) were very unaware or unaware of best practices to optimise diversity and inclusion in patient interactions and materials, and 73% had not considered behavioural change approaches and techniques to optimise patient information. Griffiths highlighted that the Shakespeare quote “What’s in a name? That which we call a rose by any other name would smell as sweet” can be interpreted to mean that names and terminology do not matter. The reality is that they do matter when speaking with patients: the language used when engaging with—and even talking about—patients is crucial, and acronyms and complex terminology can present barriers. Griffiths shared a landscape analysis demonstrating the inconsistent terminology used in patient materials, concluding that there is a need to think about clear, consistent communication that is appropriate for the end user.

The power of language

Sally Dews (Pfizer UK) continued the session, reiterating that confusion about health information and scientific jargon is a worldwide problem. For example, 43% of UK adults do not understand what dose of paracetamol to give their child because of confusing labels and 9 out of 10 US adults struggle to understand and use health information when it is filled with unfamiliar or complex terms. Considering the language used in medical communications is a small but important step towards better communication between industry, academia, HCPs, and patients/carers. Dews emphasised the need to encourage patients to get involved and to treat patients as equal and valued partners.

The need to stop using acronyms and technical language, and produce glossaries, was confirmed by a patient co-authorship group created by Pfizer. Rachel Daley (The Positivitree), a member of the co-authorship group, shared her experiences with advocacy that began when her son was diagnosed with a rare cancer. Daley spoke about her activities, including co-authoring a paper with Pfizer authors about patient involvement in research. Her main message was that patients often feel completely overwhelmed by the terminology used in published papers, so the first step towards involvement has to be standardising the terminology and using plain language. Different modes of communication may also be needed, and the importance of enrolling in training and implementing co-development practices was emphasised. Daley highlighted that language is a powerful tool for promoting diversity, equality, and inclusion to achieve meaningful patient involvement in research.

Language is a powerful tool for promoting diversity, equality, and inclusion to achieve meaningful patient involvement in research.

The patient experience is not one size fits all

Lee Wulund (AstraZeneca) then discussed the need to consider how pharmaceutical team working practices and structures may unconsciously bias the materials produced by a ‘global’ team, limiting the impact, reach, and generalisability of insights. Language and terminology are one dimension, but location and organisational diversity also have an effect. When considering the target patient audience, you must analyse what assumptions you are making, what you are requiring of the patients you work with, and whether the patients you work with are representative of the global patient population.

Wulund expanded on 4 considerations around diversity and inclusion:

• Language: it may be necessary to translate lexica and materials, and to work with local markets to understand their needs instead of assuming that preferences and insights in English-speaking countries are applicable globally.
• Terminology: person-first language should be used, reductive or dehumanising terms avoided, and accuracy maintained, with patients/advocacy groups asked about preferences. Consideration should also be given to perceived dominance in word order.
• Location and culture: differences in treatment pathways and experiences due to location and cultural norms should be considered.
• Audience demographics: characteristics such as age, sex, gender, and socioeconomic status should also be considered.

Wulund also urged medical communicators to think about the accessibility of patient materials, considering visual differences, attention span, and education level when presenting data. The format used to share information is important and should depend on what the intended audience needs and how they engage with information – for example, is a PDF the best format if it will be accessed on a mobile phone? Would video summaries or podcasts be better? Lastly, the platform used to share information must be considered in terms of discoverability, availability of access (eg, due to firewalls in certain countries), and file sizes.

Behavioural change to empower patients

Petrina Stevens (AstraZeneca) began the final part of this session by discussing how blind spots can be uncovered using a behavioural change approach. Considering the drivers and barriers linked to patient behaviour can improve understanding of the patient journey, ensuring the right information goes to the right patient at the right time. AstraZeneca have developed a framework for consistent assessment of patient behaviour, to explore psychological and physical capabilities to understand their own disease and self-care, and identify what social, physical, and cultural barriers exist. Understanding people’s thoughts, plans, desires, and habits in this way can also help facilitate successful content co-creation with patients. The hope is that understanding patients’ needs and desires, in conjunction with demographics, can help to empower patients in their journey.

Three behavioural assessment steps were suggested:

1. Identify what you wish to learn about patient behaviour.
2. Identify insights relevant to the behavioural objective.
3. Apply appropriate behaviour models to address the insights.

Stevens explained that understanding behavioural drivers supports solutions and language that activate and positively impact patients’ future health behaviour. AstraZeneca are applying behavioural change techniques across patient interventions.

Marie Eckerd (AstraZeneca) followed, noting what we say to patients can often be confusing and needs to be decoded, so using a common language lexicon is important. Eckerd noted that we want to make patient engagement attainable, rather than introducing barriers through confusing language. Common language is the backbone of an environment in which patients can be better informed and empowered to understand their disease and potential treatments. Understanding the patient environment and how patients search for information is also essential.

Eckerd then shared an example from AstraZeneca. After finding that the lexicon remained too complex, even after years working with patients, a cross-functional project was conducted to produce a searchable tool to help patients decode language in several disease areas. The tool was reviewed and improved by patients and included terms like ‘therapy’ rather than ‘intervention’ and ‘changes medications cause within the body’ instead of ‘pharmacodynamics’. Eckerd framed this as a first step in breaking the language barrier. Co-created common language reference tools can help improve patient understanding of complex information, as well as consistency.

Several interesting points were also raised in the Q&A that followed:

• Medical professionals should not be afraid of keeping it simple, and caregivers, patients, and advocates should not be afraid to ask HCPs to use simple language.
• Good, publicly accessible health literacy glossaries are available, but using AI tools may also be useful.
• Careful partnering with internal medical colleagues may be necessary to avoid complications with regulatory functions, in terms of approval of simplified language.

“What patients want matters, and what we say matters to patients.”
– Marie Eckerd

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

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

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