The 2021 European Meeting of the International Society for Medical Publication Professionals (ISMPP) was held virtually on 26–27 January. This year, over 300 delegates attended the engaging meeting themed ‘Collaboration, connectivity and change: A holistic view of the scientific communications environment in 2021’.
Day 1 of the meeting was opened by Rob Pilbrow (OPEN Health) and included thought-provoking sessions and engaging panel discussions streamed live to attendees, as well as the opportunity for discussion with the presenters of content made available to attendees on-demand. These sessions are summarised below to benefit those who were unable to attend the meeting, and as a timely reminder of the key topics covered for those who did.
A summary of the second day of the meeting can be found here.
Pilbrow welcomed attendees and introduced the 2021 meeting theme, focusing on the evolving role of publications professionals, how the needs of stakeholders have changed, and the impact of COVID-19 as a catalyst for positive change in the industry. It was highlighted that every element of publications and scientific communications have been impacted this year, creating new challenges but also accelerating innovations.
Changing times for the publications and scientific communications ecosystem: addressing challenges and accelerating innovation
The first plenary session was opened by moderator Robert Pursell (formerly of the American Society of Clinical Oncology [ASCO]) and focused on specific challenges faced by stakeholders over the past year, as well as strategies that have emerged in response.
The congress perspective
Pursell gave a congress perspective on how the pandemic brought digital hybrid meetings to the forefront, involving more high-end virtual components and allowing creation of new, innovative and engaging tactics.
“The ultimate goal is to help people engage more often and better than ever.”
By using his own experience after the March 2020 US lockdown as an example, Pursell discussed the challenges of adapting an annual meeting to a digital format in a short timeframe, and meeting the expectations of sponsors, exhibitors and attendees.
For 2021 and beyond, Pursell recommended 4 key elements of focus for meetings:
- View both the digital and in-person experiences as one meeting.
- Test the experience to keep sessions interesting.
- Focus on engagement.
- Consider the hybrid value proposition.
Despite the challenges of hybrid meetings, a digital component brings multiple benefits. Digital meetings can offer better access, help attendees overcome obstacles (eg travel), and allow more people to participate. More in-depth data can also be gained about digital congress attendees, such as the number of people participating in each session, their length of stay and how they participate. These data can be used to improve future meetings.
The patient’s perspective
Moving on to describe the past year from the patient’s perspective was Trishna Bharadia (Patient Engagement Champion and Health Advocate). The main challenges for patients during the COVID-19 pandemic were identified as:
- accessing both routine clinical healthcare and clinical trials
- finding the right information
- being able to continue with patient engagement.
Access to healthcare has been affected by availability, but also by patient fears. Bharadia gave the example of a survey of 800 people by the Patient Information Forum in the UK, which found that 1 in 3 people had delayed medical care during the pandemic, 75% of these because of COVID-19-related concerns. The volume of information and proliferation of fake news related to COVID-19 have given rise to mixed messages, making it difficult for patients to assess personal risk and make informed decisions about their healthcare and daily activities. This highlights the need for trustworthy and reliable information. Bharadia advised that scientific communications need to be understandable and released on channels used by the public, to counteract fake news and help patients recognise trustworthy sources.
“Scientific communications have a crucial role in ensuring public and patient trust in drug development and healthcare – they should be relevant, appropriately targeted, accessible and understandable.”
Despite the challenges, Bharadia recognised there were positives for patients over the last year, including:
- an increase in telemedicine
- use of virtual/digital tools which have opened up access and improved patient engagement opportunities
- highlighting of the urgent need to improve diversity and inclusion
- patient and public trust being built by organisations.
Looking to the future, it will be key to continue with patient engagement and ensure that diversity and inclusion are considered at all points of the drug development lifecycle.
The clinical trial perspective
Representing contract research organisations, Agnieszka Gackowska (Parexel) discussed the impact of COVID-19 on the clinical trial environment. The pandemic initially posed many challenges, with demand for an unprecedented number of COVID-19 studies, staffing shortages and difficulties for patients accessing sites. However, the pandemic also forced an innovative, patient-centric and site-centric approach.
“The industry mission became to implement a ‘patient first’ philosophy by reducing barriers to enable positive patient collaboration, even in potentially unpredictable situations.”
Gackowska noted the following main critical factors and strategies for approaching COVID-19 clinical trials:
- building knowledge of site capabilities by launching COVID-19 Resource Centres for sites and investigators, through close relationships with sites
- establishing advisory boards with sites, nurses, and patients
- adopting innovative solutions to protect patients and business continuity by introducing a centralised clinical trials methodology
- mapping patient access to clinical trials using a variety of solutions, eg electronically achievable solutions and provision of drugs or healthcare to the homes of patients.
Gackowska concluded her talk by reminding the audience to keep patients at the heart of everything they do by involving them in the dialogue, listening to patient feedback, and sharing information and outcomes of clinical trials to improve understanding.
The healthcare communications perspective
Joe Marshall (Mind+Matter) spoke about the implications of COVID-19 on reaching patient and healthcare professional (HCP) audiences in healthcare communications.
Marshall noted that, traditionally, the pharmaceutical industry has been viewed as a sector motivated by profits; however, the most recent Edelman Trust Barometer revealed that the pandemic has increased trust in the sector.
73% of the global informed public say they trust the pharmaceutical industry, an increase of 13% from January 2020.
Understanding of the pharmaceutical industry and the unprecedented focus on vaccine collaborations has enabled this fundamental change. Despite this, there is a contrast in how the public and HCPs are engaging with the industry’s digital platforms. Only 7% of the public say they use pharmaceutical websites for healthcare information, whereas the pandemic has accelerated existing trends for HCP use of digital communications from the pharmaceutical industry. However, building relationships with HCPs is more difficult digitally and there is a real focus on humanising digital interactions to generate engagement.
Marshall re-iterated the message that patients are at the heart of the industry, and that it is important to remain patient-centric and work closely with patients to ensure that they are getting what they need. Marshall concluded that the approach to communications needs to be agile and follow the core principles of good communication – good content and a clear understanding of audience behaviour.
The journal perspective
To finish the session, David Sampson (New England Journal of Medicine [NEJM] Group) spoke about delivering in times of crisis from a journal organisation perspective. Sampson discussed how the journal had to pivot, innovate and scale production to meet the challenges of 2020.
“This time of crisis has made us more nimble and more resilient.”
Additional critical information was published: an extra journal was published on COVID-19, and numerous articles addressing race and medicine were published following the murder of a black American, George Floyd, by police in the US in May. NEJM also began publishing single-page article summaries targeting HCPs, but Sampson noted that they do not plan to publish plain language summaries (PLS), viewing this as the responsibility of study sponsors or authors.
Keynote: the challenges of communicating COVID-19 science during an era of misinformation
Tracey Brown (Sense about Science) spoke about the urgent need to ensure that medical communications are aligned with the audiences they target, particularly during the COVID-19 pandemic.
At a time when the public is consuming more scientific data than ever, it is important to consider that most members of the public will not know the difference between a preprint and a peer-reviewed article – and that context is key to understanding the results. Further, while scientific outputs typically have a specific question they aim to answer, that objective is not always clearly identified for the public. This can lead to misinterpretation of the data. Brown gave the example of rapid COVID-19 testing, where the goal is to identify positive cases rather than screen asymptomatic patients. Despite this, testing has been publicly framed as a way to confirm whether you are ‘safe’.
“That’s the kind of thing that has been a real stumbling block—it’s not the communication of the study itself…it’s the lack of the wider context being understood that is highly problematic.”
The other issue Brown sees is hesitancy around communicating uncertainty. Scientific evidence always has an inherent degree of uncertainty, which impacts the way that we write about our results. However, Brown suggested that a more mature approach to communicating with the public is warranted, and that most people can tolerate a bit of uncertainty as long as it is explained. She discussed how we are not yet sure whether COVID-19 vaccines reduce disease transmission, but that we are fairly confident they do. Despite its relevance, this nuanced message has not been widely communicated to the public. According to Brown, the public is ready to listen.
“It’s not just that the public misunderstands the scientists; it’s also that the scientists are misunderstanding the public.”
Communicating with a lay audience: dubious data and the dangers of miscommunication
As medical communications professionals, how can we do a better job of communicating to the public? That was the tricky topic tackled by experts representing medical communications, the pharmaceutical industry, compliance, charitable organisations and publishing in this panel session moderated by Norbert Brunhuber (Vertex Pharmaceuticals).
Lay summaries are not a ‘quick fix’ for meeting the information needs of patients
Speaking from the perspective of patients, Henry Scowcroft (Cancer Research UK) advised that information-seeking behaviour is complex and changes over time depending on where individuals are in terms of their diagnosis or treatment journey.
Well-written lay information has a place in improving communication with patients but writing lay summaries for every piece of research isn’t the answer – we need to help patients to filter and interpret the information available to them.
The general public tend to use 2 vehicles for finding information about science – mass media and social media. Societal trends towards polarisation driven by social media algorithms compound scepticism about scientists and government agencies, noted Frank Orrico (Element Scientific Communications). Faced with overwhelming information, patients may rely on someone they trust to decide whether information is credible, rather than someone who knows about the topic.
People are looking for certainty, especially during the COVID-19 pandemic, but are not finding it in science; there is a lack of understanding among the general public that change and negative data are all part of the scientific process. Understanding of the clinical trial process, drug approvals and the measurement of success through endpoints is also very low.
We need to understand lay audiences in order to improve our communications with them
Dom Elliston (Galliard Healthcare Communications) emphasised the need to understand audiences. What is their current level of knowledge? What information do they want or need? Scowcroft agreed that it is critical “to understand what an audience wants to know rather than tell them what you want to tell them”.
It is critical “to understand what an audience wants to know rather than tell them what you want to tell them”.
Brown concurred, emphasising the importance of “going where the questions are” rather than “adding to the volume”.
Specific ways in which communication with lay audiences can be improved include:
- focusing on the patient perspective to humanise information
- using facts, figures, tables and charts
- involving patients in the development of material from the outset.
While video is increasingly the preferred source of information for ‘the younger generation’, this isn’t the right vehicle for communicating with all audiences all of the time. Amid widespread evidence of shrinking attention spans, Orrico noted that audiences have longer attention spans for audio versus video content.
Many pharma companies dare not attempt the ‘tricky balancing act’ of providing information to the general public without breaching legislation
Despite the fact that the pharmaceutical industry is ‘galloping to the rescue’ with vaccines to combat the COVID-19 pandemic, the industry may still not be seen as a trusted source of information, noted Sue Egan (a consultant in business ethics, compliance and governance at Sue Egan Associates). Fear on the part of pharmaceutical companies of breaching European legislation forbidding the advertising of prescription-only medicines to the public means that many pharmaceutical companies do not even attempt the ‘tricky balancing act’ of providing information without being judged to be promoting prescription-only medicines. However, Brown cautioned that pharmaceutical companies need to be careful not to ‘write themselves out of the script’.
Partnering transparently with charities, advocacy groups and other trusted partners can be an effective way of pharma providing information to the public and ultimately contributing to “getting the right product to the right patient at the right time”, Egan noted.
How are journals contributing to better communication with lay audiences?
Enthusiasm for lay content is growing and many journals are now incorporating lay content into their guidelines and processes, noted Laura Dormer (Future Science Group). The quality of lay summaries is very variable, however, and journals are having to devote resources to improve lay summaries written by authors.
The ‘layering of content’ through the provision of the same information in different formats (eg lay abstracts, video abstracts and ‘learning points’ interviews with authors) is well suited to meeting the needs of different audiences.
Barriers exist to pharmaceutical companies using social media to reach the public, but journals can play a role by providing trustworthy content in this arena. Regardless of the content format, Egan reminded attendees that content must not discuss non-approved medicines or off-label uses of approved medicines, nor encourage members of the public to ask for a particular medicine or misrepresent a medicine’s benefit/risk profile. While regulators have not issued guidance on this topic directly, the self-regulatory body for the Association of the British Pharmaceutical Industry (ABPI), the Prescription Medicines Code of Practice Authority (PMCPA), have produced guidance on how to use digital communications while remaining within the ABPI Code of Practice.
This year, 42 posters were available to view in the online poster hub, with a dedicated opportunity for discussion with poster presenters included in the meeting schedule. This year’s poster prize winners were:
- Most reflective of meeting theme: Assessment of the abuse of preprint articles for the sensationalisation of news in the Covid-19 era – Graham Allcock, Sophie Walton, Nikki Kendrick.
- Best original research: Assessment of the abuse of preprint articles for the sensationalisation of news in the Covid-19 era – Graham Allcock, Sophie Walton, Nikki Kendrick.
- Most valuable digital poster format or enhancement: Use of the preprint server medRxiv for industry-sponsored research: COVID-19 versus non-COVID-19 research – Lisa Jolly, Shalini Murthy, Nichola Gokool.
Attendees were able to join 2 roundtables during the meeting. Roundtable topics were:
- authorship best practices
- virtual congresses: challenges and considerations
- scientific communications platforms
- consensus statements in a virtual setting
- worst practices in publication planning
- health literacy and barriers to communication
- open access and Plan S: implications for industry in 2021
- negotiating with journal editors
- mental health during changing times – strategies to promote well-being for you and your team.
Patient engagement in publications: the ‘what’, ‘who’, ‘why’, ‘when’ and ‘how’
This session, moderated by Dawn Lobban (Envision Pharma Group), focused on addressing the challenges of partnering with patients, initiatives in PLS and how patients can play a key role in publications.
How do we develop effective patient partnerships?
While the importance of patient engagement is widely understood, the challenge often comes in finding the right patient for the right project. Bharadia noted that the most common question she receives from industry is about finding patients, and emphasised the importance of understanding that patients all have varying levels of experience, skills, expertise and knowledge.
“The patient landscape is changing, and patients can’t be viewed as a single homogeneous group.”
Patient networks (eg WEGO Health), social media (using relevant hashtags, eg #patientexperience), patient groups/associations, and conferences or meetings are all great resources for finding patients. Developing a patient partnership ‘toolkit’ was advised, with a reminder that good partnerships should be relevant, appropriate to the patient level, valued, fair and transparent.
Bharadia signposted attendees to various useful resources:
- Innovative Medicines Initiative (IMI) Patients Active in Research and Dialogues for an Improved Generation of Medicines (PARADIGM) Patient Engagement Toolbox
- Workgroup of European Cancer Patient Advocacy Networks (WECAN) Reasonable Patient Legal Agreements
- National Health Council Fair Market Value Calculator
- Patient Focused Medicines Development (PFMD) Patient Engagement Quality Guidance
- PFMD Patient Engagement Synapse resources
- European Federation of Pharmaceutical Industries and Associations (EFPIA) Working with Patient Groups information.
Bharadia closed by reiterating the importance of open communication to develop long-term relationships with patients, and that the best partnerships form when a patient-centric culture is embedded in an organisation.
PLS: where are we now?
Dormer provided a publisher’s perspective on recent PLS initiatives, highlighting 2 new PLS guidelines:
- PFMD ‘how-to’ guides on patient-related activities including PLS, developed using working groups with key stakeholders from industry, patient groups, academia and publishing (see recent poster)
- an ISMPP initiative to gather multiple stakeholder perspectives on opportunities and potential barriers with PLS, the findings of which will help inform future guidance.
Publishing PLS as standalone articles was discussed in relation to the Plain Language Summary of Publications (PLSP) article type now offered by Future Science Group, with key benefits including improved accessibility and encouragement of patient co-authorship. The new ‘secondary text abstracts’ tag on PubMed is another interesting development which may help to improve PLS accessibility, enhancing the ability to search for lay abstracts. Its adoption by popular journal platform Atypon may also encourage further uptake of PLS by journals.
Patient publication steering committees and patients as co-authors
Patients are using publications more than ever and are becoming increasingly involved in publication development through both authoring and reviewing PLS. Linda Feighery (UCB) shared her experience of involving patients earlier in the publication lifecycle through patient publication steering committees and patient co-authorship.
“We are making great strides in including the patient voice in the publication life cycle, but there is room for improvement.”
We saw an overview of 2 new UCB frameworks designed to help optimise processes for patient publication steering committees and patient co-authorship. Feighery echoed the importance of selecting the right patients for these roles and advised considering potential barriers, particularly around compliance, with internal stakeholders when developing frameworks.
Informatics and data visualisation: harnessing the power of data
Artificial intelligence (AI) is being applied across numerous fields including healthcare and medical research to harness the power of big data. In this session, Paul Simms (Impatient Health) introduced a series of talks that discussed how AI and innovative data tools are being used to make the most of these data and the best ways to communicate AI-generated evidence.
Using advanced visualisation and next-generation AI to drive innovation
Daniel Carey (Novartis) described how health informatics is being used in the pharmaceutical industry. Carey explained how Novartis is democratising its data with the data42 programme, which curates and centralises the data from around 850,000 patients from over 3,000 historical trials. Through the Map of Life platform, these data are being made accessible to associates to build and explore cohorts, mine the data, and apply advanced AI and data visualisation techniques. Carey also described how Novartis have utilised their internal expertise in addition to partnering with AI leaders, such as Microsoft and Amazon, to ensure that the right data and the right tools are used to make the most out of the data.
Using AI to generate new insights from public data sources
Next, Kim Wager (Oxford PharmaGenesis) introduced some basic data science concepts to explain how AI is being used to generate new knowledge from existing data. Wager explained that due to the sheer volume of new publications produced year on year, we are now faced with a deluge of data.
Classical AI technology can be used to tackle this deluge by mining the text of existing papers and extracting the important information. This can then be integrated with data from other sources and brought together in one place to form a knowledge graph, which can be interrogated to generate new insights.
Tomas Sabat (Grakn Labs) provided an example of how these processes are being used in the real world. BioGrakn COVID is a project that has utilised public data sources to integrate text-mined data from COVID-19 papers with additional biomedical datasets, including proteins, genes, biological pathways and disease/gene associations. This modelling has produced knowledge graphs that can be used to answer complex iterative questions and present the source of the information.
Communicating AI-based evidence
The final talk in the session was from Tracy Allison Altman (Museum of AI), who provided some advice on the best way to communicate AI-generated evidence. Altman described how there can be mistrust around AI as it can be seen as a ‘black box’ into which data are fed and from which a result appears. Adding transparency and creating practical ways to explain AI and other complex technologies in order to bring the audience with you is vital in creating trust.
“If people can’t understand AI-generated data, they will not trust it.”
Due to the complex nature of AI, Altman suggests building a strong team of subject matter experts to produce the communications needed.
Altman finished by giving 3 points to consider when communicating about AI data and technology:
- View AI through a lens of human collaboration: shine a light in the black box.
- Go beyond eye candy: declutter and do not get caught up in the data underneath. Focus on the key relationships and main message you are trying to communicate.
- Think in terms of graphs: knowledge graphs represent data relationships, add structure and facilitate the search.
Real world evidence (RWE): the next level
Richard White (Oxford PharmaGenesis) opened this session using a car analogy to distinguish between efficacy and effectiveness when discussing randomised controlled trials (RCTs; conducted under controlled conditions) and RWE (collected under varying conditions), respectively. In the case of COVID-19, much of data has been RWE and, unfortunately, some of the most prominent studies have been the most controversial. White used examples of studies on hydroxychloroquine, later retracted from the NEJM, and on convalescent plasma, to highlight the importance of evaluating the quality of RWE and communicate what RWE can and cannot demonstrate.
Best practices for publishing RWE studies
White noted that many of the challenges faced by RWE studies will be the same as for RCTs, but that there are additional challenges around methodology for RWE, due to the risk of bias, appropriateness of data sources, multiplicity of studies and contradictory results.
The pharmaceutical industry has built trust in RCTs through transparency and this approach also needs to be applied for RWE studies.
White highlighted various initiatives addressing transparency and reproducibility of RWE, including:
- the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) RWE transparency initiative
- RCT Duplicate
- the Reproducible Evidence: Practices to Enhance and Achieve Transparency (REPEAT) initiative.
Publication professionals can help to address the challenges of RWE through transparency in methodology, reporting, data sources and strategy. To this end:
- An International Society for Pharmaceutical Engineering (ISPE)–ISPOR Special Task Force is developing a standardised RWE study protocol template to guide methodology and RWE reporting guidelines.
- A structured template for planning and reporting on RWE study implementation (STaRT-RWE) has been developed to provide guidance on reporting RWE study designs.
- Studies can be registered at an ISPOR-led RWE study registry to help address multiplicity.
Innovative RWE: using RWE to answer difficult questions
Ram Ramagopalan (Roche) and Frederico Calado (Novartis) jointly presented the next part of the session. Ramagopalan advised that the use of RWE will increase due to improvements in data quality, the amount and types of data sources, and a larger volume of data. Insights from both RCTs and RWE can be used to understand the impact of disease on patients and the benefits of treatments.
Although RCTs will always be the gold standard when assessing the efficacy of medicines, RWE should be complimentary, and RWE may even replace RCTs in specific situations.
Social media is increasingly valuable for providing RWE for understanding patients’ perspectives, although Ramagopalan warned of potential bias and challenges in analysing these data. Wearable technology is another example of an increasingly useful tool for collecting patient data.
An increasingly digitalised society will provide more data to help understand disease and improve the lives of patients.
Educating RWE end-users to optimise clinical practice
Briana Coles (University of Leicester) concluded the session by highlighting that although there has been a recent explosion of RWE studies, there are no best practice guidelines or consensus on what constitutes a high-quality RWE study.
The primary considerations for identifying high-quality RWE studies are:
- scientific validity
- medical relevance
- methodological approach.
In addition, there are tools available to help assess the quality of RWE studies, including the Assessment of Real-World Observational Studies (ArRoWs), Good Research for Comparative Effectiveness (GRACE) and Quality of Effectiveness Estimates from Non-randomised Studies (QuEENS).
White summarised the session by concluding that RWE is an area which is evolving quickly and is of increasing importance.
“Building trust in RWE is a task for us all – with access to potentially life-enhancing new treatments at stake, we owe it to patients to act together to build trust through greater transparency.”
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.
With thanks to our sponsor, Aspire Scientific Ltd
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