The 16th Annual Meeting of the International Society for Medical Publication Professionals (ISMPP) was held on 16–18 June 2020. The 3-day meeting which, at the start of the year, was expected to be a face-to-face gathering in Washington DC, was instead held as a virtual event for the first time due to the ongoing COVID-19 pandemic. The ISMPP organisers overcame the challenges of holding sessions virtually to deliver another successful annual meeting, attracting 379 attendees!
Each of the 3 days focused on a different theme, starting with ‘Open Science’, followed by ‘Effective Communication’ and finally, ‘Evolution/Evolving Role of Med Comms’.
A summary of the second day of the meeting is provided below to benefit those who were unable to attend, and as a timely reminder of the key topics for those who did.
The Chair and Vice Chair of this year’s meeting, Carolyn Hustad and Kirsten Parr, kicked off proceedings on Day 2 by welcoming delegates and thanking the Program Committee for their work.
‘Effective communication’ was the theme of the day; succinctly summarised by the pair in a key question:
‘how do we bridge the gap between what is said and what is heard?’
Delegates heard how this theme would be tackled throughout the day, beginning with a keynote, and continuing in a programme that encompassed live sessions, roundtables and virtual posters.
Keynote: Applying the ABT framework to the communication of medicine
Dr Randy Olson (Story Circles Narrative Training) used his experience from the diverse worlds of marine biology, film making and Hollywood to outline an innovative approach to communication: the ABT (‘And, But, Therefore’) framework.
From its origins in tinsel town, to its use across different sectors of society, Olson highlighted how the ABT framework can transform communication from a state of ‘narrative deficiency’ to a ‘narrative culture’. This approach began with Frank Daniel in 1986, who noted that monotonous screenplays were those structured in an ‘and then, and then, and then’ format, while more engaging screenplays followed an ‘and, but, therefore’ structure.
- AND = agreement (outlines what is agreed on, before presenting the problem)
- BUT = contradiction (states the problem)
- THEREFORE = consequence (moves the narrative forward)
Olson provided the following example, which was developed with a graduate student to describe the focus of their dissertation, to illustrate how the ABT framework can be successfully applied to a medical scenario.
Credit: Dr Randy Olson (Story Circles Narrative Training)
Two volunteers, Todd Parker (MedThink SciCom) and Rob Pilbrow (OPEN Health) then gamely joined Olson in putting ABT to the test live, providing a dynamic example of the process:
- Develop a 1-sentence scientific ABT statement
This live demo and subsequent Q&A session allowed provided delegates with top tips to take away and put ABT into practice:
- Make the ‘And’ positive: outline how the system works when it is effective (the analogy of beginning the story of the Titanic with the ship setting sail, rather than meeting the iceberg was used as a clear illustration of this!).
- State the problem as soon after ‘But’ as possible: ‘the turn’ of the narrative.
- Think of presenting the ‘results’ before the ‘methods’ when creating an ABT statement.
- Be as concise and compelling as possible.
Poster 2.0: Creating better research posters
For decades, we have been using the same, wall-of-text traditional poster design at medical congresses. However, recently the #betterposter movement has questioned whether the traditional poster layout is effective. Possibly the biggest challenge with traditional posters is that congress delegates need to stop at a poster to get the message. They can’t get the main message “at a glance” while they walk by.
In this session, Mike Morrison, a PhD candidate in organisational psychology (University of Michigan), argued that the traditional poster was designed before the internet and that we should apply design principles that we have learnt over the past 30 years to improve the learning experience for delegates. Since the birth of the internet we have learnt a huge amount about how people consume information and the information foraging theory has been developed. In line with this theory, when delegates at congress are glancing through posters, they are seeking information that is interesting, but that requires minimal effort to read and understand (termed the interaction cost). So, for example, people prefer images and short blocks of text to large blocks of long text as the latter has a much higher interaction cost.
“…when congress delegates are glancing through posters, they are seeking information that is interesting, but that requires minimal effort to read and understand”
Numerous tips for improving poster design were provided:
- The message/main conclusion of the poster should be included in the title with a large font for people to easily see and understand when walking by.
- The main image should take up most of the poster and should be easy to understand. The point was made that “notional images” are easier to comprehend than figures/graphs.
- Key supplemental information should be displayed at the sides/periphery of the poster in a much smaller size than the main title and image.
- Any other more detailed information should be made accessible to interested attendees via a QR code.
- The colours and fonts used in the poster should be chosen appropriately to trigger emotion, which has been shown to help people retain memory (eg green for good, red for bad).
An example of a #betterposter is shown below. Further templates and examples can be downloaded here.
Morrison argued that the 2 golden rules of scientific poster design are:
- Don’t put things on your poster that people ignore.
- People will ignore most things.
Morrison then went on to address potential concerns that people working within medical communications may have with this new approach to poster design, in a discussion session with Jason Gardner (CMC Connect). First, Gardner noted that there may be concerns about replacing the traditional poster with an untested format. Morrison explained that initial findings indicate that the #betterposter works, with around 70% of people surveyed at one congress preferring the format over a traditional poster design. Gardner also raised the potential concern that emphasising the main findings and key words in a #betterposter could be perceived as cherry-picking information or adding bias to the communication. Morrison argued that conveying one key message well may be better than failing to effectively deliver any messages, due to the undigestible amount of text that is often seen on traditional posters, and noted that with skilled writing, the key message could be a conservative and balanced one. Gardner highlighted that one perceived advantage of the traditional data-heavy poster is that all of the information is contained within one place, which can be useful when responding to unsolicited queries, for example. However, it was argued that accompanying digital content can contain all of this information, also allowing data to be shared more easily in formats optimised for viewing on different devices.
Patient involvement in medical communications: a live how-to guide
There are many benefits to involving patients in medical communications. For pharmaceutical companies, it can improve trial recruitment and retention, and build trust with patient communities. For the broader patient population, communications can be made more relevant and appropriate, building a more informed and empowered patient community. In this session Lauri Arnstein (Envision Pharma Group), Trishna Bharadia (Health Advocate and Patient Engagement Champion), Dawn Richards (Canadian Arthritis Patient Alliance) and Vanessa Pott (Merck KGaA) discussed practical ways to ensure ethical and effective patient involvement in medical communications. Three scenarios were discussed:
- Patient authorship of a peer-reviewed paper.
- Patient involvement in an advisory board.
- Patient presentation at a scientific symposium.
For each scenario, the speakers provided tips and tools to implement into practice, shown in the following table. Broadly speaking, to achieve successful patient engagement we must:
- adapt our processes to make them work for the patient
- know our patients and their needs (as an individual and a group)
- be respectful of their time and knowledge.
Partnering with patients can only continue to make patient-focused communications more relevant – as health advocate Ms Bharadia succinctly put it:
“Nothing about us without us”
Table: Practical tips and tools for patient engagement
|1. Patient authorship on a peer-reviewed manuscript|
|2. Patient advisory boards|
|3. Scientific symposia|
In this interactive session, attendees were able to join the following roundtable discussions:
- How to nurture new clients into long-term relationships
- The ten most important things to know when planning an advisory board
- What matters most if you want your paper read
- Debate: Publication plain language summaries – scientific exchange or product promotion?
- Digital and enhanced media options
Advancing health literacy in clinical research: clear communications for every participant
In the USA, around 35% of adults have health literacy levels that are basic or below basic. This presents a tangible problem in clinical research, where it is critical that patients understand the research that they are partaking in. Sylvia Baedorf Kassis (Multi-Regional Clinical Trials [MRCT] Center of Brigham and Women’s Hospital and Harvard) and Laurie Myers (Merck & Co) discussed the tools available from the MRCT Center to facilitate health literacy in clinical trials.
Meyers opened the discussion by noting that:
“there has never been a greater need to communicate with people on health than at the current time”
During the ongoing COVID-19 pandemic, we are being bombarded with information about vaccines, drugs, clinical trials, as well as confusing and contradictory information on risk factors. Knowing how to interpret this information can pose a challenge for most people. Furthermore, patients often rely on family or friends to help interpret healthcare information provided in a clinical setting. However, with COVID-19 quarantining, this support network has been unavailable for many.
In April 2018, the MRCT Center convened a working group to understand the challenges of low health literacy, and develop and curate content to support communication. They aimed to develop standards, establish best practice, improve transparency, and identify opportunities for improvement throughout the clinical trial lifecycle. Baedorf Kassis shared the toolkit that MRCT has developed, which includes best practice recommendations, guidance, case studies, tips, and step-by-step guides. The key aspects of health literacy that are considered in this toolkit are:
- the use of plain language
- numeracy (expressed in its simplest form)
- the use of clear design
- usability testing (by representative users)
- cultural considerations
- interactive techniques (eg verbal reinforcement and teach-back methods).
Baedorf Kassis challenged delegates with a three-point call to action:
- Advocate at your organisation: use the ‘Health Literacy in Clinical Research Principles’.
- Start where you are: ideally health literacy principles start before recruitment, but should be implemented whatever the stage of the trial lifecycle.
- Get patient input: people actively involved in their healthcare tend to have better outcomes, so find out early what patients want to learn and get input into how to provide this information.
The potential benefits of applying health literacy best practice include increased participation in studies, improved adherence, reduced attrition, increased awareness of research, and higher levels of satisfaction in the research experience. The MRCT toolkit should go some way to help researchers achieve these benefits and better engage patients.
Oral presentations and poster winners announcement
This year’s meeting featured a virtual poster hall for the first time, with 46 posters selected for presentation. Some authors took advantage of the virtual format to showcase innovative designs, including interactive, audiovisual elements, audio tours and additional features such as links to polls.
The poster winners were as follows:
- Best original research – Online attention and reach of open access industry-sponsored medical publications (Adam Watson, et al) & Consumption of publication content – mapping the audience journey to inform omnichannel planning in an open world (Adam Ruth, et al)
- Best practice – Developing a company-wide process for publication plain language summaries (Angela Sykes, et al)
- Best in visual communication – Consumption of publication content – mapping the audience journey to inform omnichannel planning in an open world (Adam Ruth, et al) & Social media: how are pharmaceutical companies using it? (Tamalette Loh, et al)
- Publication star – Industry-sponsored research on the preprint server medRxiv: the first 6 months (Andy Karalian, et al)
Oral presentations session
Two members presented their research in this session, which was moderated by Sharon Suntag (Chair of the ISMPP Abstract Committee; IQVIA).
First up was Judy Fallon (The Curry Rockefeller Group), discussing ‘Plain language summaries (PLS): how are we doing? Assessment of readability in peer-reviewed journals.’ Fallon noted that PLS are increasingly recognised as an important tool for dissemination of medical information, and best practices are evolving. The objective of Fallon’s research was to assess the reading level and readability of PLS of peer reviewed literature indexed in PubMed from 2017–19. Included PLS were freely available within PubMed or on journal sites; readability was assessed using the Flesch Kincaid calculator and Readable.com. In total, 314 PLS were identified, of which 263 were evaluated for readability (some were excluded as they were behind journal paywalls). All of the PLS analysed were plain text (without infographics, figures or tables) and 80% were directly available in the PubMed record.
Nearly all (97%) PLS analysed were at college or college graduate reading level (difficult or very difficult to read, respectively). Despite being the best practice recommendation, none were 6th–8th grade reading level, and only one was 8th–9th grade level (plain English; the reading level of a 14–15 year-old).
The trends in readability were consistent across the years evaluated. Fallon concluded that further improvements in readability, through using shorter sentences and simpler words, are needed to promote accessibility of PLS for target audiences. More PLS should be made freely available – although a dedicated alternative to PubMed might represent a better approach to reach patients and caregivers. In the future, infographics or graphical abstracts could also be useful to reach non-specialist audiences.
Second to present was Jason Gardner (CMC Connect), on the topic ‘Man or mouse: are lay-media headlines and scientific-publication titles true to the study population?’ This research sought to investigate the accuracy of science reporting in the lay media, an important topic, given that many people don’t read beyond misleading ‘clickbait’ headlines that often omit the study population. With many headlines purportedly describing research conducted in humans, Gardner highlighted the Twitter account justsaysinmice, which draws attention to cases where the underlying research was actually conducted in mice.
Gardner’s research addressed 2 questions:
- Do lay-media headlines and the associated scientific publication titles clearly reflect the study population?
- In instances where the headline does not clearly state the study population, is a human study population implied?
To answer these questions, 261 lay media news headlines from 7 online news sources were analysed on 1 October 2019. The articles covered human research (54%), animal research (18%), in vitro research (12%) and included literature reviews and opinion pieces (16%; ‘other’). Where the study population was not specified in the headline, 51% of cases correctly implied that humans were the study population. However, for animal and in vitro research, around two-thirds of headlines incorrectly implied that the study population was human.
Such implications commonly involved the use of pronouns or human collective nouns (such as men/women, patients, people or survivors) which bring the message into the human context – and may result in more clicks.
However, this issue is not restricted to the lay media. Gardner also described the 234 scientific sources behind the lay media headlines. Of these, 73% of titles accurately described human research, but the titles’ of around a third of animal or in vitro studies incorrectly implied that the study population was human.
Gardner noted that such scientific titles commonly included human disease condition names (without stating that a model was used) or used terms for human therapy or behaviour – although occasionally, human pronouns or collective nouns were also used. Interestingly, research is ongoing to compare the accuracy of scientific publication titles from industry with those from academia.
Concluding, Gardner noted that medical publications professionals can improve this situation by communicating good publication practices to researchers, whether in industry or academia. However, he highlighted that the Animal Research: Reporting of In Vivo Experiments (ARRIVE) guidelines do not require the animal species to be stated in the title. He also noted that the scope of the GPP3 guidelines is restricted to industry-sponsored publications and suggested that future iterations should also cover academia. Finally, Gardner urged us all to strive to promote clarity and accuracy to help avoid miscommunications, which may damage public trust in science.
Putting the ‘drive’ in patient-driven publications
This session was devoted to best practices in engaging patients in the publications process. In introducing the session, Michael Pellegrino, a medical communications consultant, explained that pharmaceutical companies are becoming more patient centric. Patients are playing a growing role in drug development, research design, development of patient-related outcomes and peer review. However, there remains a lag regarding the integration of patients into pharmaceutical-led publications activities.
Suz Schrandt (ExPPect LLC) went on to make the point that patients are proving to be invaluable in helping to develop lay summaries. In particular, patients can:
- help to ensure lay summaries are easy to read and understand
- interpret why the information being conveyed in the lay summary is important to the community
- clarify how patients can/should use the information
- explain whether there are any risks or reasons for caution.
Importantly, these valuable patient insights can inform the main publication, not just the lay summary. Patients can help interpret and frame a study. As well as reviewing for tone and language sensitivity, they can help explore findings from a patient’s perspective due to their unique understanding of living with the disease and the potential side effects of therapies.
“Patients can help to make publications more relevant, more useable and more reflective of the real-world reality of living with a disease.”
Finally, Dikran Toroser (Takeda) emphasised the importance of involving patients or patient advocates early on in research (eg when the protocol is being written) and then consistently working with them through to publication, maximising the value that they can add. Toroser also stated that since medical publication professionals tend to work across the whole spectrum of the research process, they are perfectly positioned to drive patient engagement and become patient champions. However, organisational behavioural changes will be key to ensuring that this engagement is optimised, particularly with respect to involving patients at an early stage.
Thinking beyond the ordinary: Optimising medical communications for rare diseases
“If you’ve seen one patient, you’re an expert. If you’ve seen two patients, you’re a world-renowned expert.” Jeff Stumpf (MedThink SciCom) opened the session with this quote as it underscores the challenge when communicating rare diseases. Although rare diseases are numerous, challenges result from a lack physician awareness leading to late (or mis-) diagnosis and inconsistent treatment. Medical communication is therefore extremely important.
Disease awareness medical communication strategies
In most rare diseases, the focus of medical communication strategies is disease awareness:
- Scientific platforms should address common questions, such as the unmet need, mechanism of disease, and current diagnosis and treatment.
- Pivotal trial data will not be as substantial as in other disease areas, so publication plans should focus on patient issues, leveraging case studies to engage physicians on the patient journey, and reviews to establish the basics.
- All medical communication strategies should aim to extend the reach of their communications.
As with all diseases, identifying, targeting, and reaching the correct audience is imperative. Stumpf presented case studies to show that more general physicians do not need the same level of information as rare disease specialists; for example, an emergency room physician would benefit from a quick reference guide, whereas specialists may require more thorough patient management checklists. Communications may best be delivered electronically, especially in light of COVID-19, and partnering with third-party networks can elevate their reach through closed physician networks, publishers, and article portals. Stumpf concluded the talk by emphasising that there is room for innovation in the publication space, and for creativity in medical affairs deliveries.
Next, Scott Baver (Medical Affairs Professional), discussed how patient-level data can be utilized to tell the story of patients, with the ultimate aim of better patient management. Baver presented a case study showing how patient burdens are not always adequately captured by trial endpoints, for example, the effects of disease between flares. In this example, a patient survey, which allows the patient to be the author, was suggested as a potential solution to capture the totality of the disease burden, and could be used to complement other approaches.
“Rare diseases are rare, but not to the patients”
Baver noted that for some rare diseases, the condition affects the patient every day. In addition, it is important to remember that a rare disease patient journey is typically winding. The journey likely encompasses a long path to diagnosis, challenges in partnering with the right care provider, management of adverse events and comorbidities (often using a network of specialists), and finding the correct treatment, all of which can go on for a lifetime. The role of the medical communications professional is defining the steps in the patient journey, highlighting factors that contribute to therapy discontinuation, and developing educational strategies to support therapy maintenance.
Another important consideration with rare diseases is that with low patient numbers and unconventional or unfamiliar endpoints, clinical trial protocols and data can be messy. Setting expectations with physicians is key to ensure that they understand the advantages of treatment. Presenting patient case studies that focus on adverse events or other sticking points from trial data can help set expectations with physicians, and educate and empower them to make the best treatment decisions.
Expanding the rare disease community
Baver concluded the session by listing some ways in which medical communication professionals can expand their rare disease expertise:
- Updating expert guidance, eg Delphi-style consensus panel.
- Connecting rare disease experts to broader fields, eg disease state webinars or symposia.
- Leveraging the energy and passion of specialists to develop next-generation experts by providing tools, eg via train-the-trainer events.
In summary, medical communications in rare diseases is not only uniquely challenging, but also comes with exciting opportunities. A well-conceived communication plan is critical, and there is great potential to use innovative tactics to raise disease awareness.
Watch this space — day 3 summary coming soon!
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.