The 2021 European meeting of ISMPP: Day 1 key take-homes and insights
By Alison Chisholm (Principal Writer) and Agnieszka Ragan (Medical Writer), Oxford PharmaGenesis
This year’s ISMPP EU meeting went fully virtual, with some striking changes to the format, and delivered some powerful insights into current topics in medical publications and planning. You can read our thoughts on Day 2 here. Here’s what we learned from Day 1.
Opening Remarks & Plenary – Changing Times for the Publications and Scientific Communications Ecosystem: Addressing Challenges and Accelerating Innovation
As the format of medical conferences evolves in response to the global pandemic, digital meetings have become the mainstay around the world. This shift demands that sessions be more engaging, interesting, shorter and to facilitate the natural interactions that would happen in a face-to-face meeting. Along with the challenge comes the opportunity: the digital format allows for more inclusive, flexible and accessible information exchange.
In these times of an overwhelming volume of medical information and disinformation, the accessibility to high-quality written materials is also affected. In recognition of this, publishers are enhancing digital versions of articles with visual abstracts, research summaries and short-take videos.
All speakers recognized that it is now more important than ever to translate science to the public and make it widely accessible. The good news is that public trust towards the pharmaceutical industry has risen and is almost equal to that given to frontline healthcare workers, which presents greater opportunities to reach the lay audience and collaborate with patients.
The ongoing pandemic has heavily affected the healthcare system. There is an urgent need to improve healthcare accessibility beyond telemedicine and digital platforms, and find ways to resume halted clinical trials while ensuring safe participation of patients in clinical research.
Above all, the current situation presents an opportunity to re-focus on patients and find new dimension to collaboration.
Keynote: The Challenges of Communicating COVID-19 Science During an Era of Misinformation
Rather than wringing our hands in despair at misunderstandings in the COVID public debate, Tracey Brown (Director, Sense About Science) encouraged us to focus on opportunities for improved science communication and shared four top tips that should always be kept in mind.
Ask the right questions
Central to good science communication is asking the right questions, and then conveying that information to the right audience. Effective communication is not about volume and supply, but rather about achieving successful, targeted delivery to relevant recipients.
Provide the key context
Scientific writers are usually aware of research legacy and context. They understand the rationale, quality and contribution of the data they are communicating. Yet audiences often consume information in isolation, without expertise or context, which creates opportunity for misinterpretation.
Recognise the value of intermediaries
Effective scientific writing that is well received by (for example) a professional or governmental audience can help to cascade complex information down to lay audiences.
Trust the public with uncertainty
Humans like to deal in certainty, but scientific writing all but outlaws declarative statements; this absence of definitive statements can be ‘weaponized’ as uncertainty by the media. Science communicators should make explicit that is it possible to know something with confidence, even if some questions remain unanswered.
Communicating With A Lay Audience: Dubious Data and the Dangers of Miscommunication
Before developing content for lay consumption, the expert ISMPP speakers emphasized the importance of first understanding who the audience is, their prevailing knowledge, interests, trusted information sources/channels and their information-seeking behaviours. Once this has been established, it is then essential to be clear about the purpose of the communication – what are you trying to say and why?
We now live in an omnichannel age, where traditional broadcasting has been replaced with personalized communications. Content must be taken to the audience and tailored to the user profile, needs, knowledge and behaviours of each channel (Twitch, YouTube, Facebook, podcasts, press) – plain language summaries just aren’t enough.
Communications professionals working on behalf of pharmaceutical clients to engage with lay audiences should: partner with trusted bodies, such as advocacy groups, to enhance content credibility; be aware of unconscious scientific biases and assumed levels of knowledge; consider the shareability of digital content; combine data overviews with patient stories and perspectives, and be mindful of potential compliance pitfalls (e.g. remain factual and on-label, avoid promotion, include risk profiles and a way to report adverse events).
Q&A – Patient Engagement in Publications: The ‘What’, ‘Who’, ‘Why’, ‘When’ and ‘How’
The faculty underlined the importance of using multiple channels to reach patients. Although many face-to-face interactions with healthcare professionals have been lost, patients have gained access to conferences and other engagement opportunities, which create a unique opportunity for them to influence their own treatment approaches and management strategies.
Importantly, patients are now recognized as research and publishing stakeholders, which has been reflected in the rise of patient-focused language in publications. The inclusion of plain language summaries in manuscripts is rising, with some becoming stand-alone, peer-reviewed, searchable publications. Publishers are also increasing the visibility and signposting of these materials. Additionally, patients are becoming recognized as potential co-authors of scientific publications.
Regardless of the chosen avenue of collaboration, interactions with patients should always be ethical, considerate and compliant with industry standards.
Q&A – Informatics and Data Visualisation: Harnessing the Power of Data
Information doesn’t exist in neatly structured formats; the relationships that make up our world are seldom linear. As such, using artificial intelligence (AI) to model information in a more expressive way can prevent a huge loss of knowledge in data analyses.
AI and machine learning technologies are complex, but the expert ISMPP speakers recommended that science communicators should invest in understanding them, at least at a conceptual level, as the application of AI is becoming ubiquitous across the product cycle. Expertise in communicating AI-supported research will be in increasing demand.
The key challenge when writing about AI is providing the audience with enough detail to gain trust, but not too much to overwhelm.
Tracy Altman (Founder of the Museum of AI) offered three tips for writing about AI. First, make the level of system autonomy clear – does it work alone or can it be over-ridden by humans? Second, beware of data visualizations masking meaning. Decision-makers’ insights and answers must be clearly communicated. Finally, use graphs as they are a powerful communication tool and help readers to infer meaning for themselves.
Q&A – Real World Evidence: The Next Level
Recognition of the value of real-world evidence (RWE) continues to grow across the product lifecycle and pharmaceutical companies are increasingly working with technology partners and alliances to access more integrated real-world data sources and optimized data analytics.
Sreeram (Ram) Ramagopalan (Global Head RWE, Roche) and Frederico Calado (Head RWE Innovation & Partnerships, Novartis) discussed social media as a rich source of RWE, particularly for value demonstration. Patient blogs, for example, can be coded to delineate data on disease, disease duration, therapy, comparative outcomes, relative healthcare resource use and treatment preferences. The challenges of data interpretation are non-trivial, but surmountable and worthwhile.
The increasing ubiquity of wearables, such as smart watches, also represents an emerging source of valuable patient-centric data. Studies are already underway to explore the potential of integrating ‘smart data’ with clinical and registry data to assess disease burden and treatment outcomes.
However, trust in RWE remains a challenge. Central to robust RWE reporting are: transparency around the use of appropriate methods (e.g. sources of bias); description and justification of data source selection; addressing perceptions of publication bias (e.g. a priori registration); and interpretation of the results in the context of established evidence, particularly where results contradict those of randomized controlled trials.