Notes from the Open Pharma Satellite Symposium “Who can we trust? Open science and pharma research” at the Association of Learned and Professional Society Publishers (ALPSP) Conference 2022, Manchester, UK
10:00–12:30 BST, Wednesday 14 September 2022
During the pandemic, the confluence of mixed messaging, poor communication of key scientific concepts, misinformation and political polarisation undermined the public’s trust in science. Encouragingly, however, the latest research from Ipsos’ Global Trustworthiness Monitor shows that the pharmaceutical sector’s response to COVID-19 has had an overall positive effect on the general public’s trust in pharma, which increased from 25% in 2018 to 31% in 2021 (1). The Salve recently attended Open Pharma’s Satellite Symposium to explore this area further and to find out how pharma, their medical communications agency partners, and publishers can continue to build trust with healthcare professionals, patients and the public.
The opening question to the floor from speaker Richard Smith (former editor of the British Medical Journal [BMJ] and chief executive of the BMJ Publishing Group) was “How does the pharma industry and its suppliers increase trust?” Richard Stephens (patient advocate) began by addressing the value of trust in pharma for patients and patient organisations. Richard noted that as a group, ‘patients’ are not the same audience for pharma as ‘the public’. The public (as a generalisation) are often deeply cynical and mistrustful of science, scientists and healthcare professionals. However, he explained that trust shifts dramatically when you become a patient, whereby you suddenly have no choice but to place your trust in science and in healthcare professionals. One key question for many patients is, “How can patients access the evidence base behind what their doctor is telling them?” Patients’ inability to easily access the evidence is what breeds mistrust and feeds cynicism.
How does the pharma industry, and its suppliers increase trust?
Chris Rains, VP Global Medical Affairs at Takeda, discussed Takeda’s open access journey, which started in 2018 with the implementation of its open access policy. This requires the submission of all Takeda-supported research manuscripts to journals that offer public availability via open access. Indeed, Chris recounted a key moment on this journey during which the Wellcome Trust challenged the rationale for pharma keeping research behind a paywall. The Open Pharma initiative was born out of this initial challenge. Chris noted that Takeda’s journey towards the goal of fully open access publishing is still underway. Only 20% of publishers currently offer open access under a CC-BY licence (the most liberal of the Creative Commons ‘Attribution’ licences), although at least 75% of publishers do offer open access in some form other than CC-BY. As such Takeda takes a ‘pragmatic’ approach to open access given the current publishing constraints. It was noted that not all pharma companies have adopted open access policies at the same rate, with many lagging behind considerably. Some companies believe they do not need to be on the open access journey but Chris believes 100% of publications in open access journals should be the ultimate goal for all pharma.
Pharma is like a battleship that takes a long time to turn. Legacy thinking hinders positive mindset changes.
Barriers to implementing open access in pharma more widely were discussed, including negative legacy attitudes, and particular geographic barriers, for example, China. More often than not, however, the main barrier is fear. This might be fear that pharma will lose control of their data or fear of the reaction of Key External Experts and investigators. There has also perhaps been a ‘fear’ from publishers that the CC-BY licence could be exploited by pharma for commercial gain and/or spell the end of reprint revenue. However, Chris felt strongly that these fears are unfounded noting that “Pharma is like a battleship that takes a long time to turn. Legacy thinking hinders positive mindset changes.”
It was felt that more work needed to be done on open access advocacy within the industry, in particular on raising awareness and explaining the benefits of open access to patients, internal pharma colleagues and wider society. As such, medical communications professionals have a role to play in consulting for their pharma clients to support moves towards fully open access publishing policies and practices. Chris highlighted that for Takeda, one of the essential steps in implementing their open access policy was good internal training and alignment within Medical Affairs. It was also felt there was a need to improve liaison with authors regarding journal selection so that more emphasis is placed on accessibility and altmetrics rather than simply impact factor.
Med comms professionals have a role to play in consulting for their pharma clients to support moves towards fully open access publishing policies and practices.
Leila Moore from Wiley discussed the role and value of open access publishing in communicating pharma research. She explained that the concept of ‘open science’ incorporates open data, open access, and other open practices and that this definition could be widened to include a more transparent ‘open’ peer review process. The role of pre-print servers in open science was also discussed and it was agreed that this is still an evolving area. The recent 2022 update to the Good Publication Practice (GPP) guidelines (2) states that “Since preprints generally are not peer reviewed, they should not be a routine element of publication planning or data dissemination for company-sponsored clinical trial data.” However, GPP 2022 acknowledges that “urgent public health needs may necessitate the use of preprints for clinical trial data in limited circumstances to collect feedback.”
In the final half of the symposium session, accessible summaries of published research were discussed. Encouragingly, Richard Stephens noted that for patients, the rate and pace of access to plain language summaries (PLS) has seemed fast and has tracked the similarly rapid rate at which pharma has been perceived to involve patients more widely in R&D, through trial design consultation and in communications planning. Adeline Rosenberg, Oxford PharmaGenesis, delved into the ‘who’ of PLS development with an insightful presentation on audiences and usage. This was followed by a presentation from Sarah Thomas, Global Medical Publications and Communications Senior Manager at Ipsen, on their commitment to PLS publishing. Sarah explained that from July this year, Ipsen has committed to publishing, as a minimum, a 250-word PLS alongside all company-sponsored journal publications from human studies. Next steps from Ipsen in this area include the development of a formal SOP, lexicon updates, as well as looking into options to improve accessibility and discoverability.
Building on the discussion around PLS accessibility, Caroline Halford, Development Director for Medical Education, Springer Healthcare, noted that demand for accessible formats of publications by patients has increased substantially in recent years. The benefits of PLSs are many-fold from reducing misunderstanding of published research, facilitating sharing of content, creating additional readership, and supporting better dialogue between healthcare professionals and patients. Caroline explained that articles with PLSs are downloaded more often than those without, and enhanced article features such as video abstracts help support comprehension of data. Caroline noted that the audience for PLSs is the ‘informed lay person’ and questions therefore remain over how discoverable and accessible PLSs are to an ‘average’, less well-informed person. Arguably it’s often the less well-informed who could benefit most from a more in-depth understanding of treatment or disease so, in The Salve’s opinion, there is still work to be done on the discoverability of PLSs and in improving reach to a wider lay audience.
In The Salve’s opinion, there is still work to be done on the discoverability of PLSs and in improving reach to a wider lay audience.
Richard Stephens argued that for any given research, it would be more efficient to write up and publish in lay language from the outset rather than duplicating effort developing expert vs lay summary versions. Although there are plain English improvements that could undoubtedly be made to pharma-sponsored research publications, given the high levels to which healthcare professionals study and practise, a more realistic solution to improved lay person accessibility might be to offer a ‘multi-layer’ approach to information dissemination, in which audiences can delve within an article to a level that they are personally comfortable with. As such, perhaps an era of ‘personalised publishing’ may be just around the corner. It was agreed though that the remit of PLSs could be widened, in particular for those enrolled in clinical trials and could include trial-specific newsletters written in lay language.
The panel of speakers summed up with their personal opinions on increasing trust in pharma; in particular, it was agreed that one of the key steps in increasing trust is “bringing all relevant stakeholders to the table” and all agreed that pharma’s open access initiatives and improvements to the accessibility of PLSs are crucial to this process.
Elena Mills, Co-founder and Managing Director, The Salve Health
More information on driving positive change in the communication of pharma-sponsored research can be found on the Open Pharma website. Open Pharma is a multi-sponsor collaboration facilitated by Oxford PharmaGenesis.
References:
1. Ipsos 2022. https://www.ipsos.com/sites/default/files/ct/news/documents/2022-01/ipsos-global-trustworthiness-monitor-is-trust-in-crisis.pdf#page=45 (accessed 21 September 2022).
2. DeTora, LM et al., Ann Intern Med. 2022;175:1298–-1304 (suppl.). doi:10.7326/M22-1460