Meeting report (part 1 of 2): notes from Day 1 of the 2023 European Meeting of ISMPP

Day 1: 10:00-17:30 BST, Tuesday 24 January 2023

For the first time in two years, old friends and new met face-to-face for the European Meeting of the International Society of Medical Publication Professionals?(ISMPP) in London. Throughout the two days, creativity was at the heart of the sessions and discussions covered not just all things publications but a wide spectrum of medical communication activities and initiatives. It was a fantastic opportunity for The Salve to discuss and contribute to the latest research and dialogue in scientific communication.

Chair's Welcome

The meeting kicked off with the Chair’s welcome from Rob Pilbrow , an introduction from ISMPP Secretary of the Certification Board Ann Gordon (Haddow) and the Presidential Address from Robert J. Matheis, PhD, MA . The panel highlighted that ISMPP is flourishing, with a growing membership, and increasing certification numbers. Uptake of the ISMPP Authorship Algorithm has been good since it was rolled out last year and there will be upcoming updates to the Certified Medical Publication Professional (CMPP) programme. Looking ahead, ISMPP will continue to lead industry innovation in their mission to support rigorous and remarkable medical communications.

Blazing a trail to successful patient partnerships in publications

Patients are central to all medical communications, and the first session, “Blazing a trail to successful patient partnerships in publications” was a case in point. Dawn Lobban (Envision the Patient), Trishna Bharadia, BA(hons), MFPM(Hon) (The Spark Global), Jamie Griffin (Bristol Myers Squibb), Avishek Pal (Novartis), and Catherine Skobe (Pfizer) brought patient and industry perspectives to the role of publication planning, co-authorship and plain language summaries (PLS). The big “why?” for involving patients is undoubtedly to improve patient care and to make information accessible to a broader audience, and Catherine Skobe suggested a number of ways this can be achieved. While larger pharmaceutical companies have the resources to engage actively with a broad demographic and regional range of patients via a Patient Board, there are still positive actions that can be undertaken by companies with smaller budgets. Catherine Skobe noted that gathering even a small number of patient insights directly can help companies better understand the needs of patients, and by ensuring this information is disseminated to relevant colleagues, these insights are invaluable in shaping patient-centred publication strategies.

Patient authorship, particularly in the area of compensation, was a hot discussion topic across both meeting days. The industry is approaching patient compensation in different ways, with some companies offering payment using a fair market value calculator, and others not providing any payment due to their internal compliance processes.

Trishna Bharadia informed attendees that patients can be involved in publications in a variety of ways, and the industry should be open to that, noting additionally that patient experience and skills need to be matched with publication requirements, as these vary among patients. She reminded attendees that only patients themselves have lived experience of their condition, but the experience of caregivers and family members is also valid and worthy of expression. Patients can meet all ICMJE authorship criteria; they can help design studies (criterion 1) and recognise they cannot be experts in every area of the publication but trust their co-authors (criterion 4). The industry should create the right processes and environment within which patients feel empowered to provide their feedback on publications, for example including flexibility with timelines and review stages, signposting to resources such as Envision the Patient (https://www.patientauthorship.com/), and providing compensation. Author affiliations for patients can also be challenging, depending on how patients want to refer to themselves. Currently, there is no standardised terminology.

The industry should create the right processes and environment within which patients feel empowered to provide their feedback on publications.

Finally, Jamie Griffin highlighted the processes involved with implementing PLS consistently across publications: PLS need to be considered and included prospectively in the publication plan (noting all Phase 3 trials should have PLS); they should be open access; they should summarise one publication and be published alongside it where possible.

PLS are not just useful for patients either; Time-pressed healthcare professionals (HCPs), including those with English as a second language, and payors/policymakers also find PLS useful. This broad audience for publication PLS may help with any concerns that pharma legal and compliance colleagues might have in developing these materials. A PLS toolkit including checklists and templates, plus the involvement of an expert patient review panel can be incredibly helpful.

Effective Creative Thinking for Success

In this session, Duncan Stevens (creativity consultant) provided a fun but informative session on thinking outside our med comms (head) boxes.?He asserted that we are all born with the ability to be creative, but we are told to conform, so thinking creatively is something that we need to train our brains in consistently by building fun into our daily lives. He provided several ways to do this; gathering multiple different ideas and building upon existing ideas can help to create or “stack” something greater than the sum of its parts. This definitely resonated with The Salve’s proprietary approach to solving complex healthcare challenges, more on that another time! While it is not possible to reduce creativity down to a process there are steps that can be taken to create ideas: preparation (gathering insights), incubation (time to reflect), illumination (the “aha” moment), evaluation (is it possible?), and verification (test the prototype).

Afternoon roundtable discussions

After lunch, there was an incredible range of interesting round table sessions making it hard to choose which ones to join! We attended “Creating consistent communication through effective Scientific Communication Platform socialisation” moderated by Gemma Rogers (Oxford PharmaGenesis) and Kayhan Binazir (UCB). The attendees described a diverse range of experiences with platform development. All agreed that scientific platforms had great value for the industry, but were often not implemented consistently across products, and/or lacked buy-in from all relevant internal stakeholders.

We also attended “Clear and present data: how to increase the impact and reach of your medical publications with data visualisation”, which was a valuable discussion led by James Wells (CMC Connect) and Helen Boyd (Pfizer); and nicely aligned with the theme of the meeting. Roundtable attendees agreed there is a (currently largely unmet) need to think creatively with data visualisation but barriers can include compliance issues and HCPs who tend to like to see data presented in a particular way. However, it was also agreed that challenging HCPs with new formats can often be successful!

The publication professional’s guide to trends and challenges in evidence generation

In this session, Matthew Booth and Alex Morton (Medistrava), Sreeram Ramagopalan (Industry Representative) and Tove Holm-Larsen (Silvi/Ghent University) held a fascinating discussion. While RWD is still not considered as rigorous as randomised controlled trial (RCT) data, it is playing an increasingly important part in our understanding of treatment effects. In particular, it is able to complement and address deficiencies of RCT data, especially in rare diseases. Sreemam Ramagopalan highlighted that long-term data on clinical effectiveness and safety, prescribing patterns, patient-reported outcomes and economic evidence can be challenging to generate with RCTs, but can all be gathered from RWD. There are also some novel sources of data to consider such as those obtained from wearables and social media. Ensuring robust methodology is key to the acceptance of RWE studies by regulatory bodies, and publications have a significant role to play in ensuring high-quality communication of these data.

Real-world data (RWD) and real-world evidence (RWE) are other hot topics right now. Why? Regulatory bodies, including the National Institute for Health and Care Excellence (NICE), are starting to use RWE in their decision-making.

Alex Morton confirmed that gathering patient experience insights from a diverse and inclusive population is also paramount for patient-centred health care and should be incorporated from an early stage of clinical study development. Insights from social media and utilising a variety of insight-gathering methodologies can help better understand the patient journey. Finally, Tove Holm-Larsen presented real-world examples of using artificial intelligence with 'big data' to speed up data compilation for evidence-based medicine in an ethical and rigorous way:

1) HedaX is a digital platform able to source data from registries, apps, wearables etc. that is currently involved in two pilot projects in oncology and bipolar disorder. It looks at how personal health data can support improved personalised care

2) OSCAR is a platform that also enables collection and analysis of health app data and questionnaire responses etc. with the aim of supporting sustainable healthcare systems

3) silvi.ai is a tool that screens literature and extracts data to support systematic literature reviews and meta-analyses.

Using creative approaches to address literacy and accessibility of scientific information

In the final session of Day 1, Susan Daniels and Richard Lee (Lumanity), Jan Geissler (Patvocates) and Graeme Johnston (Patient Focused Medicines Development) joined together to provide the patient (and agency) perspective on health literacy and accessibility of scientific information.

Patient insights from Jan Geissler and Graeme Johnston were hugely informative, and clearly outlined the huge demand for information from patients and the potential lack of health literacy in many patients. Consequently, presenting clear and accessible content for patients is an utmost priority for medical communications professionals. Materials should be co-created with patients, with roles and responsibilities defined upfront, a two-way feedback system including sharing the final version, and with appropriate acknowledgement of the patient’s contribution. Resources for best practice co-creation can be found at the Patient Engagement Management Suite (https://pemsuite.org/).

Finally, practical tips from Richard Lee helped us all understand what we can do to develop creative, engaging and successful patient materials: for example, consider accessibility barriers and needs such as sight (e.g. check contrasts), motor/mobility (e.g. minimise scrolling requirements), auditory (e.g. captions/transcripts) or cognitive (e.g. use icons, columns etc) and test materials with patients throughout the process.

Liz Southey, Co-founder and Scientific Services Director, The Salve Health

Look out for our highlights from Day 2 of the ISMPP EU 2023 meeting coming in the next few days!