Adoption of Health Literacy Best Practices to Enhance Clinical Research and Community Participation Proceedings of a Workshop—in Brief (2022) / Chapter Skim
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Proceedings of a Workshop - in Brief
Proceedings of a Workshop - in Brief
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There are legitimate and varied reasons, said Bierer, for why individuals have concerns and questions about research in which they might participate. She said that investigators and study teams conducting research should have the responsibility for addressing those concerns to enable potential participants to consider whether to participate in that research, saying: We want to make sure that participants enter clinical trials voluntarily and that they understand what they are contributing to and the risks and benefits thereof, but equally that we make sure we engage those participants appropriate to the trial and to the condition.
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• What do researchers and clinical research stakeholders need to do to support participants before, during, and after a research study? A PATIENT PERSPECTIVE Elizabeth Cahn, Multi-Regional Clinical Trials Center of Brigham and Women's Hospital and Harvard, spoke about her experiences with clinical research as a patient, family member, and caregiver, and someone who works professionally with patients, families, and caregivers.
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TOOLS TO IMPROVE THE HEALTH LITERACY OF CLINICAL RESEARCH INFORMATION The workshop's first panel session featured two presentations on resources for discussing clinical research information in a language that is understandable to patients and that promotes health literacy. The first speaker was Sylvia Baedorf Kassis, who presented on several such projects underway at the Multi-Regional Clinical Trials Center of Brigham and 3
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Catina O'Leary, Health Literacy Media, moderated a discussion session following the two presentations. Multi-Regional Clinical Trials Center: Health Literacy in Clinical Research and a Common Plain Language Glossary To begin her presentation, Sylvia Baedorf Kassis described the vision of the Multi-Regional Clinical Trials Center, which is to "improve the integrity, safety, and rigor of global clinical trials." She and her colleagues work toward this vision by "engaging diverse stakeholders from across the research ecosystem to help define the emerging issues" that individuals working in the clinical trial space are facing.
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In October 2021, Baedorf Kassis also shared the glossary on screens around the Brigham and Women's hospital system for health literacy month. She and her colleagues are now working toward deploying the glossary on a clinical trial recruitment website.
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That, said Kress, is the next big challenge her team hopes to accomplish in 2022, as well doing the same thing for the European Union's clinical trials registration site.9 O'Leary then asked Baedorf Kassis and Kress to speak more broadly about the strategies they have used to engage multicultural audiences during both development and implementation of the tools. Speaking about engagement during the development process, Kress replied that she turned to Merck's cultural competency group and nurses' network, which was particularly valuable when they learned that terms they thought of as self-explanatory were not for all audiences.
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for Massachusetts, which is one of 21 such state-level initiatives to promote diversity, equity, and inclusion in clinical trials. In her introductory remarks, Monique Hill said that she has been the program manager for one of her institution's community outreach health literacy projects for 11 years, as well as most recently being appointed health literacy and partnership engagement advisor for the National Network of Libraries of Medicine Region 2 Medical Library (housed at the Medical University of South Carolina)
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He noted that if properly harnessed, the burgeoning collective energy and resources emerging around diversity, equity, inclusion, and accessibility -- the latter of which is important for individuals with a disability -- could benefit clinical research and, in turn, the health outcomes of underserved community members. Building Trust and Leveraging Community Partnerships With that last thought in mind, he asked the panelists how they leverage trust that community members have in leaders of community-facing organizations, including faith-based organizations, in the context of clinical trials.
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Trusted Messengers and Health Literacy Buchanan then presented that question to the entire panel, asking them to comment on what infrastructure exists to empower community leaders to serve as trusted messengers around health research, using health literacy. Angove shared an example of a project that attempted to address this challenge.
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For example, she stated that her organization is focusing on explaining to potential participants that without their participation, researchers will create solutions that do not include their community and their perspective, and that participating gives them a voice. She stated that crafting that message in a clearer way is part of the challenge of creating health literate outreach materials.
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She noted that the important consideration for anyone who wants to partner with one of these community organizations is to make sure there are significant resources, including money, available for that potential partner. It is also important to expect those organizations to be a full collaborator and influential partner in the process, whether that involves clinical trial recruitment or improving health literacy in a community.
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The responsibility for the published Proceedings of a Workshop -- in Brief rests with the institution. Workshop planning committee members are Gemirald Daus, Health Resources and Services Administration; James (Jay)
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