Catherine Skobe, MPH, Pfizer, New York; Angela Sykes, MA, MPhil, Pfizer, New York; Chris Winchester, DPhil, Oxford PharmaGenesis, Oxford, UK
A Call to Action to Medical Publication and Communication Professionals
With the weight of the COVID-19 pandemic upon us, the values of equity, diversity, and inclusion (EDI) have never been more visible nor played a more dynamic role in healthcare. As medical publication professionals, we have a crucial role in communicating scientific research accurately and truthfully, which provides a unique opportunity for us to support and realize these key values as they affect healthcare decisions.
Defining a roadmap for how medical publication and communication professionals can contribute to and influence the global conversation is more important than ever. There is clearly the need for a two-pronged approach. Simply put, one path is to advance EDI for those in our field, and the second is to focus on improving the outcomes of diverse populations in healthcare. Of course, the most powerful outcome occurs when increased diversity in our profession creates an opportunity for the voices and needs of minority populations to be represented in medical publications and communications, thereby helping to deliver equity in outcomes for the patients we are here to serve.
The essence of equity is fairness. In the field of medical publications, we have been on a journey to promote equity through accessibility to medical information via open science, open access publishing, and publication plain language summaries (PLS) for patients, caregivers, healthcare professionals, and researchers alike. Building trust with our audiences comes through the values of equity and transparency. We need to learn from mistakes made in the past1,2, and we must progressively seek new avenues to expand medical communications more openly and in a way that truly reflects our global society.
Being in the epicenter of the pandemic has raised the visibility of healthcare inequities affecting various populations. Almost in parallel with the pandemic, the Black Lives Matter movement has raised awareness of marginalized communities disproportionately affected by COVID-19,3 including Latino, indigenous, and LGBTQ communities, among others. By increasing our consciousness, this movement has highlighted the broader global issues related to EDI in science and medicine.4 Many organizations and journals in this arena have added their voices and provided statements in support of greater equity.5,6,7,8
The medical communications and scholarly publishing professions have also signaled their support. In a powerful message from its President and Executive Director, the American Medical Writers Association (AMWA) acknowledges that “the systemic racism and inherent bias in our country’s policies have led to racially based health disparities that adversely and disproportionately affect minority groups, including the black community. Health and well-being for all cannot exist alongside endemic racial health inequities.”9
As well as releasing its own statement,10 the Society for Scholarly Publishing (SSP) has also committed to an action plan. This plan includes providing leadership for the Coalition for Diversity and Inclusion in Scholarly Publishing (C4DISC)11, a collaboration of 10 trade and professional organizations formed to discuss and address issues of diversity and inclusion. Core aspects of the plan are commitments to actively recruit more diverse voices to participate in their work, and create educational content focused on EDI. The Toolkit for Equity and other initiatives from C4DISC can help inform us, as medical publication professionals, on ways to enhance publication planning and authoring, among other processes, to foster EDI.
As ISMPP advances its vision of becoming the leading global authority on the ethical and effective communication of medical research to inform treatment decisions, it has been sharing best practices in two important areas for EDI: open access publishing and PLS.
First, open access. We all too often hear stories from healthcare providers unable to afford journal subscriptions or patients unable to find or access high-quality medical information. Such barriers may disproportionately affect those from disadvantaged communities, as highlighted by the focus of this year’s 10th annual Open Access Week (October 19th – 25th), which is Open with Purpose: Taking Action to Build Structural Equity and Inclusion. Introducing the theme in the Open Access Week blog, Nick Shockey of SPARC (the Scholarly Publishing and Academic Resources Coalition) writes, “Yet today, structural racism, discrimination, and exclusion are present and persistent in places where openness is a core value. As a global community, it is important to understand that the systems and spaces of the present are often built upon legacies of historic injustice and that addressing these inequities is a necessity.”12 Similar calls have come from the Commonwealth Fund13 and in The Lancet.14 By encouraging authors to choose journals that allow us to publish open access, we can improve access to medical research and eliminate barriers to information that could affect healthcare treatment options and outcomes. Access to medical research findings is fundamental to transparency. Educating authors on the importance of targeting journals providing free-to-read options is a key imperative in fulfilling equity.
Second, publication PLS. Translating publications written for a scientific audience into a language that can be easily understood by healthcare providers, researchers, patients, and caregivers is proven to be an effective mode of communication.15 Consequently, PLS continue to be a hot topic in our profession, as reflected in recent issues of The MAP,16 and new guidance for medical publication professionals in the upcoming Good Publication Practice for Communicating Company-Sponsored Medical Research: GPP4. By making the results of our research easily understandable and freely accessible, we are empowering patients and the wider public, including those from disadvantaged communities, to take ownership of their health.
Of course, there is more we can do. Throughout the pandemic, diversity and inclusion have been at the forefront of discussions regarding clinical trial participation. In this spirit, Pfizer has been posting regular updates on the diversity of its COVID-19 vaccine clinical trials.17 Rod MacKenzie, Chief Development Officer at Pfizer, recently stated in Nature Reviews Drug Discovery, “We call for a concerted and urgent commitment by sponsors, regulators and policy-makers to reduce the inequities of access to clinical trials that today exclude too many people in need. Actions could include ensuring that people who are under-insured have the opportunity to participate. In addition, to help build trust in racially and ethnically disadvantaged communities, the number of clinical investigators and research site staff from these communities should be increased.”18
Fortunately, we are making progress and there is a growing trend of industry and academia partnering to address healthcare disparities.19 The authors’ two companies (Pfizer and Oxford PharmaGenesis) are among a number of companies supporting the Center for Information and Study on Clinical Research Participation (CISCRP) with a Patient Diversity Educational Media Awareness campaign this month (see Figure below).20
Figure. Materials from the CISCRP Patient Diversity Educational Media Awareness campaigna
a CISCRP. International media awareness campaigns. Available from: medicalheroes.org. Accessed September 2020.
As custodians of communicating medical research, it is our responsibility to ensure that meeting patients’ needs is always at the forefront of the work that we do. As ISMPP members, we have clear opportunities to support and increase EDI in our work. By being more globally minded in our approach, we can recognize the importance of having representation from diverse communities in our research and communications. Senior leaders at many pharmaceutical and biotechnology companies are setting examples for the healthcare community by speaking out on how to achieve EDI in their organizations, providing a roadmap for us to follow.21 We can actively seek more diversity in healthcare providers, scientists, and investigators to be authors and presenters of publications. We can support and mentor university students from minority populations in their pursuit of medical publication and communication professions. We can listen to our colleagues and peers who have not been well-represented and support them in their career paths. Finally, as ISMPP members, let’s engage in discussions about this important topic at our meetings, on social media, and in our online forums.
In the end, inclusion achieves a reflection of the global community, involves a more comprehensive population in medical research, and may speed up discoveries in the treatment and prevention of disease that will benefit us all. As medical publication professionals, we can help to lead this change in how and what we communicate and, in turn, build and strengthen trust. Ultimately, do we, as a medical publication professional community, have a more important responsibility?
|Roadmap to Achieving EDI in Medical Publications/Communications|
|– Advocate for diversity in clinical trial representation|
– Invite healthcare providers, scientists, and investigators from diverse backgrounds and perspectives to be authors and presenters of publications
– Develop publication plain language summaries (PLS) for patients, caregivers, healthcare professionals, and researchers to close knowledge gaps
– Encourage open access publishing for improved accessibility and transparency
– Mentor university students from minority populations
– Hire and support colleagues and peers of diverse backgrounds in their careers
1 Scharff DP, Mathews KJ, Jackson P, Hoffsuemmer J, Martin E, Edwards D. More than Tuskegee: understanding mistrust about research participation. J Health Care Poor Underserved 2010;21(3):879–897. 10.1353/hpu.0.0323
2 Paul DW Jr, Knight KR, Campbell A, Aronson L. Beyond a Moment – Reckoning with Our History and Embracing Antiracism in Medicine. N Engl J Med. 2020 Oct 8;383(15):1404–1406. https://www.nejm.org/doi/10.1056/NEJMp2021812
3 The Editors. Black Health Matters. Scientific American 2020;323(2):8. https://www.scientificamerican.com/article/too-many-black-americans-are-dying-from-covid-19/
4 Subbaraman N. How #BlackInTheIvory put a spotlight on racism in academia. Nature 2020;582:327. https://www.nature.com/articles/d41586-020-01741-7
5 American Medical Association. AMA Board of Trustees pledges action against racism, police brutality. Available from: https://www.ama-assn.org/press-center/ama-statements/ama-board-trustees-pledges-action-against-racism-police-brutality. Accessed September 2020.
6 Parikh S. AAAS CEO comments on social unrest, racism, and inequality. Available from: https://www.aaas.org/news/aaas-ceo-comments-social-unrest-racism-and-inequality. Accessed September 2020.
7 Systemic racism: science must listen, learn and change. Nature 2020;582(7811):147. https://www.nature.com/articles/d41586-020-01678-x
9 Winter-Vann A, Krug S, for the AMWA Board of Directors. A message from the AMWA President and Executive Director. Available from: https://www.amwa.org/news/511877/A-Message-from-the-AMWA-President-and-Executive-Director.htm. Accessed September 2020.
10 Society for Scholarly Publishing. Reaffirming our commitment to diversity, equity, and inclusion. Available from: https://www.sspnet.org/community/news/reaffirming-our-commitment-to-diversity-equity-and-inclusion/. Accessed September 2020.
12 Shockey N. Theme of 2020 Open Access Week to be Open with Purpose: Taking Action to Build Structural Equity and Inclusion. Available from: http://www.openaccessweek.org/profiles/blogs/2020-theme-announcement-english. Accessed September 2020.
13 Commonwealth Fund. In focus: reducing racial disparities in health care by confronting racism. Available from: https://www.commonwealthfund.org/publications/newsletter-article/2018/sep/focus-reducing-racial-disparities-health-care-confronting. Accessed September 2020.
15 Bredbenner K, Simon SM. Video abstracts and plain language summaries are more effective than graphical abstracts and published abstracts. PLoS ONE 2019;14(11):e0224697. https://doi.org/10.1371/journal.pone.0224697
16 Blyth J, Gaskarth M, Plant A, Woods K. We need to talk about PLS…exploring the opportunities of plain-language summaries. Available from: https://ismpp-newsletter.com/2019/05/01/we-need-to-talk-about-plsexploring-the-opportunities-of-plain-language-summaries/. Accessed September 2020.
17 Pfizer. Our progress in developing a potential COVID-19 vaccine. Available from: https://www.pfizer.com/science/coronavirus/vaccine/?cid=LI_08_PBG_ClinicalTrial&linkId=98536986. Accessed September 2020.
18 MacKenzie R, Honig P, Sewards J, Goodwin R, Hellio MP. COVID-19 must catalyse changes to clinical development. Nat Rev Drug Discov 2020; doi: 10.1038/d41573-020-00149-2 https://www.nature.com/articles/d41573-020-00149-2
19 Multi-Regional Clinical Trials Guidance Document. Available at: https://mrctcenter.org/diversity-in-clinical-trials/download/522/ Accessed October 2020.
21 Sagonowsky E, Blankenship K, Snyder Bulik B. Biopharma CEOs call for action on systemic racism—across America and in their own ranks. Available from: https://www.fiercepharma.com/pharma/as-discussions-about-racism-inequality-play-out-nationwide-biopharma-ceos-speak-up. Accessed September 2020.