Going virtual: highlights from ISMPP EU 2021
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.
This past year was full of unprecedented change and accelerated innovations for our industry, many of which are likely here to stay. Adapting to these changes will involve ensuring that key thought leaders, authors, MPPs and healthcare providers are comfortable with the digital environment. Overall, the main message of this year’s ISMPP EU Meeting was clear: public interest in science is at an all-time high and it is the responsibility of our industry to provide scientific communications that not only maintain this interest, but also build trust and understanding. Our team were delighted to be involved and we have summarised the key highlights here.
The switch to digital
The ongoing COVID-19 pandemic has brought with it many challenges for the industry, but also many opportunities, adaptations and accelerated innovations. We may have lost the traditional face-to-face-format of meetings to a computer screen, but this has resulted in greater flexibility and access for those who may not have previously had it. 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, 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.
Building trust in an era of mistrust
The predominant discussion during the meeting was about building trust and improving transparency. Several panel members spoke of the epidemic of unverified information – or so-called ‘infodemic’ – that has intensified during the COVID-19 era, and how 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 who may be unaware that the information has not been assessed for robustness. 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. In a member research oral presentation by Nisha Sheikh and Anna Popova (Ipsen), a sobering 13,500 predatory journals were listed in 2020 and numbers are continuing to rise by an estimated 2,000 journals per year, according to the Cabells predatory reports database.
So what can the medical publication industry do to combat this? In one panel discussion, there was a unanimous agreement to focus on personalised communications, which are more effective than non-specific broadcasts. 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 instead be focusing on tailoring content to the target 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.
Video platforms such as YouTube are especially popular with younger demographics and can be particularly effective for visual storytelling. However, they are not always suitable for all audiences. Podcasts were mentioned as an effective medium for communicating more in-depth information, as they are easy to digest and audiences have comparatively longer attention spans for audio than video, as Frank Orrico (Element Scientific Communications) noted. Other ways that MPPs (medical publication professionals) 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 material 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.
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. Although intangible and, therefore, more challenging to explain than a simple statistical model, the mathematics behind the modelling is not necessary to provide a clear explanation. 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: improving inclusivity and accessibility
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.
- Involving 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 audience was reminded that patients should not be viewed as a homogenous group and to consider the differing levels of expertise and subject knowledge. 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.
Increasing impact and 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.
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.
Much like the innovation we are starting to see around publication planning, virtual congresses in 2020 saw non-traditional poster formats increasing in popularity. These formats included reformed layouts with less text and improved data visualisation, as well as enhanced features such as audio and video narration. In a rapidly changing world with increasing demand for digestible and bitesize content, gaining readership and maintaining audience attention are vital. Embracing these innovations and digital formats are, therefore, important for keeping up with this pace and, when used effectively, can help improve public understanding of scientific and medical research.
The power of RWE
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, as well as collaborating with technology providers to access more patient-level data and improved analytics. The speakers acknowledged that although randomised clinical trials will remain the gold standard for medical research, RWE studies will provide complementary insights that together will provide a better understanding of 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).