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Engaging patients early and often provides the best methods for mutual learning, adaptation, and shared decision-making to transform and develop relationships built on mutual respect and appreciation.
sector we can work together to embrace, activate, and incorporate the value of
the patient experience. By incorporating health literacy principles into the many dimensions of research and development, clinical trial processes, marketing communications, and patient education materials, we empower patients and give them voice.
about the authors
Catina O’Leary, PhD, LMSW President and CEO
Health Literacy Media (HLM)
Catina oversees HLM’s core activities
and works to set and maintain the strategic vision for the organization. Catina has steered
the organization onto the course of becoming a true partner to a broad spectrum of healthcare organizations around the world. She can be reached at coleary@healthliteracy.media.
Cathryn E. Gunther
VP, Global Population Health Merck & Co., Inc.
Cathryn is a healthcare strategist,
innovator, and collaborator, working across public and private sectors. Recently, she
launched Merck’s Global Population Health, establishing the corporate framework for innovative approaches that create sustained social and business value. This work includes advancing the company’s thought leadership to improve patient and community health literacy. She can be reached at cathryn.gunther@merck.com.
Deborah Collyar
President
Patient Advocates In Research (PAIR)
Deborah has been a leader in patient engagement and advocacy since her first cancer diagnosis. Deborah founded the PAIR international network in 1996, “where research meets reality” and consults with the health and medical research communities. She can be reached at deborah@tumortime.com.
Laurie Myers, MBA, Global Health Literacy Director at Merck and Andrew Pleasant, PhD, Senior Advisor on Health Literacy Interventions, Research, and Evaluation at Health Literacy Media also made significant contributions to this article.
Engaging with diverse communities of patients earlier and more often in clinical trials will:
1. Aid companies in understanding what outcomes are relevant to patient communities. 2. Develop and obtain clear informed consent in respectful ways.
3. Determine what language to use.
4. Support more convenient and flexible ways to participate.
5. Collect meaningful patient experiences that facilitate clinical trial completion.
6. Create relevant patient information and user-focused packaging.
Additionally, engaging patients early and often provides the best methods for mutual learning, adaptation, and shared decision-making to transform and develop relationships built on mutual respect and appreciation.
We began this article with a focus
on the biopharmaceutical industry’s need to fully embrace health literacy. We postulate that such an action will result in benefits to the industry, patients, and public health, including an increase in diverse participation
and retention in clinical trials. This will also contribute towards improved patient and caregiver understanding of the safety and efficacy of medicines and vaccines.
Progress is being made at the global level, as demonstrated
by the Shanghai Declaration of 2016 (https://bit.ly/2ZnuGRM). One outcome of the World
Health Organization’s 9th
Global Conference on Health Promotion was to prioritize
health literacy as one of the key strategies to reach the Sustainable Development Goal targets (https:// sustainabledevelopment.un.org/ sdgs). These goals lie at the heart of the United Nations’ effort to lead the world toward sustainable development. Reaching all these goals requires coordinated and sustained partnerships between
all sectors and all levels of society—business, government, civic organizations, and patient communities.
COVID-19 reminds us of the vital role that health literacy plays
in achieving population health goals—whether at the country or global level. Across the healthcare
32 pm360 magazine / September 2020