The COVID-19 pandemic has played a big role in highlighting issues related to equity, diversity, and inclusion (EDI) in healthcare. Our role, as medical communication/publication professionals, in disseminating accurate, fair, and balanced information provides us with unique opportunities to support and influence EDI-related challenges as they affect healthcare decisions. At the ISMPP Virtual 17th Annual Meeting, held in April this year, I had the opportunity to attend a session on a related topic: “Equity, diversity, and inclusion: Defining a roadmap for our profession“. This session was conducted by the following eminent speakers: Angela Sykes, Publications Standards and Best Practices Lead, Pfizer; Chris Winchester, CEO, Oxford PharmaGenesis; Beryne Odeny, Associate Editor, PLOS; Durhane Wong-Rieger, President & CEO, Canadian Organization for Rare Disorder; and Catherine Skobe, Sr Director, Publications Innovative Solutions Lead, Pfizer.
• Learn about the importance of bringing diversity to our work and how to achieve it
• Discuss how to build equity through authorship, plain language summaries, and accessibility
• Drive advocacy to incorporate EDI in medical communications/publications
The panel discussed the following focus areas as part of the roadmap for our profession to address these issues.
- Advocate for diversity in clinical trial representation: Diversity is important in enhancing the robustness of clinical trials. Diverse populations increase the generalizability of findings and make them more relevant for people in different contexts. When diverse groups of people are included, the study is perceived to be more relevant and patients are more willing to participate in it. Medical communication plays an important role in helping overcome the trust issues related to participation in trials. It is important to communicate with empathy, while ensuring that the communication addresses the needs of these communities in a manner that is meaningful to them. Additionally, patients must be included across the drug development cycle from trial design and steering committees to publications.
- Invite healthcare providers, scientists, and investigators from diverse backgrounds and perspectives to be authors and presenters of publications: Diverse authorship is critical to extending the reach of research to different populations and ensuring its subsequent dissemination by these populations, which in turn can allow the research to be translated into clinical practice. Authors from low- and middle-income countries and those in fragile and conflict-afflicted settings have limited opportunities to publish. It is important for publication professionals in these communities to reach out and ensure that these authors receive support and guidance when they seek to publish. This support should not be perceived as a favor but rather as enabling valuable contributions to academic knowledge that high-income countries can learn from. Several journals are now taking steps to encourage diversity in authorship and announcing that they will ensure EDI on their editorial boards. It is important to have metrics or ways of measuring progress on our road to EDI.
- Develop publication plain language summaries (PLS) for patients, caregivers, healthcare professionals, and researchers to close knowledge gaps: PLS are an incredible vehicle allowing everyone access to medical research; hence it is important to drive PLS discoverability. PLS should be developed based on health literacy best practices and should be made available as open-access materials. Patients and caregivers should be involved in PLS development to ensure that they are relevant to the population. Translations should consider cultural sensitivities and should not be literal translations, and they should be reviewed by a local language expert with specific knowledge of the disease. It is also important for patient advocates and others to increase awareness about PLS.
- Encourage open-access publishing for improved accessibility and transparency: Open-access materials will play a huge role in making research accessible to all. Open access is about equity, and it means that anyone anywhere in the world from any background can access the full content of a publication. All medical communications are ultimately created for patients, so patients should be the first to be allowed access to such communication. Increasing trust in the scientific community is paramount to medical communications pieces being used successfully to their full potential.
In addition to the above areas, mentoring university students from populations not represented in our profession and hiring and supporting colleagues and peers of diverse backgrounds in their careers were also covered as focus areas in a subsequent related session.
Putting patients’ needs first is important for medical publishing professionals. As custodians of communicating medical research, it is important for us to implement the various elements of the approach described in the roadmap and ultimately build trust.
This article is part of the Virtual 17th Annual ISMPP Meeting report. Get your full copy of this comprehensive report today!
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About the author
Elvira D'souza is President, Cactus Life Sciences.