Collaboration, connectivity and change: highlights from ISMPP EU 2021
How successful are online meetings? How can we build trust in scientific reporting and AI-generated research? How can we improve information accessibility and inclusivity in clinical trials? How can we reach a bigger audience digitally? And what are the pros and cons of real-world evidence? We found out at this year’s ISMPP EU meeting.
We’ll meet again…
According to a research presentation delivered by Valerie Philippon (Takeda), around one in five medical and scientific congresses in 2020 were cancelled, and a similar proportion postponed, due to the COVID-19 pandemic. But just over half still went ahead in an entirely virtual format. This is a testament to how quickly many conferences have been able to adapt, with many also embracing the chance to expand their scientific programmes to include interactive sessions and offer support for digital enhancements.
The global infodemic
The predominant discussion during the meeting was about building trust and improving transparency. Several panel members spoke of the so-called ‘infodemic’ of unverified information that has intensified during the COVID-19 era. Trustworthy scientific evidence is becoming increasingly difficult to spot amongst the vast sea of information and fake news.
Unverified and potentially unbalanced scientific data from pre-print articles are being used to generate sensationalised news and social media attention, potentially misleading the public.
Crucially, patients use what information they consume online to make decisions about their health. Faced with an overwhelming volume of information, some may be turning to those they trust – but are not necessarily well-versed in the subject matter, such as family and friends – to decide what is credible.
So what can the medical publication industry do to combat this? Henry Scowcroft (Cancer Research UK) emphasised that plain language summaries (PLS) are not the single catch-all solution to effective communication with patients; there is none. Instead, strategies should be focusing on personalised communications which target the audience’s needs, knowledge level and information-seeking behaviours. Director of Sense About Science, Tracey Brown, stressed the need to ask the right questions – ones that are important to the public – instead of simply adding to the volume of information.
Other ways that medical publication professionals (MPPs) can improve communications with lay audiences, explored by the panel, included:
- Partnering transparently with trusted spokespeople, charities and advocacy groups to build credibility.
- Combining data with patient perspectives to humanise information.
- Educating the public on how the industry works, from the clinical trial and drug approval processes, to how we measure efficacy though endpoints and what they mean.
- Involving patients in discussions and development of materials as early as possible.
Regardless of the chosen medium, communications must always be compliant with the relevant regulations, including factual and on-label discussions only, avoiding promotion and covering the full risk profile.
Trust in machines
Artificial intelligence (AI) and machine learning (ML) were also topical. Often met with apprehension and mistrust, this is usually attributed to their complexity and tendency to be seen as an impenetrable ‘black box’ in which the processes and inner workings are unknown. However, these technologies are being increasingly applied across product lifecycles, from drug design through to real-world evidence (RWE).
As demand for expertise in communicating AI-generated research will only increase, the speakers advised that investment in understanding AI/ML conceptually will be beneficial to MPPs. Tracey Altman (Museum of AI) provided us with three tips for communicating about AI data:
- Consider AI through the lens of human collaboration, as a combination of machine-generated conclusions and human-interpreted ones.
- Focus on communicating the main message, rather than the visualisations and distracting data.
- Use graphs to help audiences infer the meaning for themselves.
Communications for all
Another major topic at the meeting was ensuring that information is open and accessible to all those that need it. We were reminded by Fiona Plunkett (Articulate Science) that the Open Access initiative Plan S is now live, and leading publisher groups such as Cambridge University Press, Springer Nature and Elsevier have adopted the framework.
Becca Wilson (University of Liverpool) delivered a thought-provoking keynote that called for greater and proportional representation of people with disabilities in medical research. Despite accounting for up to one-fifth of the UK population, disability communities are not currently proportionally represented in clinical trials and comprehensive data on participation of people with disabilities are not widely available. Critically, this underrepresentation and lack of inclusion skews research towards ‘healthy’ people, bringing scientific validity into question and ultimately impacting on the interpretation of findings.
To combat this systemic issue, Becca suggested:
- Implementing ongoing unconscious bias awareness training. Instead of one-off sessions, which are likely to be forgotten by the time they are enacted, fostering an inclusive culture through constantly evaluating and improving practices in the media, work and public life are more beneficial.
- Using accessible communication formats – such as large print, Braille, audio, video captions and images – which makes information more inclusive of disability communities and broadens the reach of our communications.
- Consulting the disability community and providing them with a voice in helping forge research direction, prevent concerns around research actions and assist with making communications accessible. One way is through public advisors.
The conversation around patient engagement and involvement remains particularly active. Speakers agreed that patients are now recognised as, and should remain, primary stakeholders in research and publishing. This is reflected by the continued rise in journals accepting PLS and dedicated PLS pages now appearing on some publisher websites and PubMed.
The increased interest in patient co-authorship was also discussed, but speakers emphasised the importance of industry compliance, ensuring ICMJE criteria for authorship are met, as well as considering fluency in the publication language and potential conflicts of interest.
More impact, better engagement
In an age of ever-growing volumes of information and sources, reaching audiences is undoubtedly a huge challenge. Over the last decade, dissemination of medical information has expanded beyond traditional peer-reviewed journals and formal publications into the internet and social media, which are now key players in the exchange of medical information.
As this shift has been accelerated over the past year, MPPs were advised to gain a better understanding of social media and digital initiatives in order to identify and engage with Digital Opinion Leaders (DOLs), individuals with expertise and influence within specific online channels. They represent a separate but overlapping community to traditional key thought leaders and will play an important role in navigating the future communications landscape.
Video platforms such as YouTube are especially popular with younger demographics and can be particularly effective for visual storytelling. Podcasts were mentioned as an effective medium for communicating more in-depth information; audiences have comparatively longer attention spans for audio than video, as Frank Orrico (Element Scientific Communications) noted.
Strategies for increasing the impact and engagement of scientific posters were also discussed by several speakers. Bearing in mind the objectives of scientific posters – to showcase research, create engagement with the data and act as networking platforms – social media can be an invaluable tool to achieve those objectives. Alison Lovibond (BOLDSCIENCE) shared several tips, including focusing on the key takeaways, avoiding content clutter, mentioning relevant users to extend reach and adding an external, enduring link to the full presentation.
Virtual congresses in 2020 saw non-traditional poster formats increasing in popularity. Smart layouts with less text and improved data visualisation, as well as enhanced features such as audio and video narration were well received. With the increasing demand for digestible and bitesize content, gaining readership and maintaining audience attention are vital.
The power of real-world evidence
RWE is quickly evolving and becoming increasingly important as studies grow in volume and diversity. The panel touched on how the pharmaceutical industry is beginning to move away from traditional ready-to-access data sources and instead towards data-generating technologies. Collaborations with technology providers to access more patient-level data and improved analytics are also being sought. The speakers acknowledged that, although randomised clinical trials will remain the gold standard for medical research, RWE studies will provide complementary insights into the impact of disease on patients and the benefits of treatments.
Best practice for reporting RWE studies was also discussed, with Richard White (Oxford PharmaGenesis) noting that many of the challenges facing trust in RWE studies can be addressed through transparency in:
- Methodology – to address risk of bias and confounding.
- Rationale behind the choice of data sources.
- Strategy and study registration – to address multiplicity of studies and publication bias.
- Reporting – to address contradiction of results between RWE studies with randomised clinical trials.
Rich sources of real-world data can be found in social media, patient blogs and support groups. Although valuable and highly rewarding for understanding patient perspectives, the speakers warned of the challenges in analysing and interpreting these data without bias. Wearables, such as smart watches, were also mentioned as a useful tool for collecting patient data.
Finally, Briana Coles (University of Leicester) cautioned that misinterpreting RWE, such as by over-generalising beyond the target population or assuming causation from association, has significant implications on clinical practice. However, there are many tools and resources to help assess the quality of RWE studies, including Assessment of Real-World Observational Studies (ArRoWs) and Good Research for Comparative Effectiveness (GRACE).
This year’s European Meeting of ISMPP (International Society for Medical Publication Professionals) took place on 26–27 January 2021 and saw over 300 delegates attending entirely virtually. The theme was ‘collaboration, connectivity and change’ and sessions featured an array of panel discussions, roundtables, keynotes and poster presentations on many current hot topics in the medical publications and planning world.