Professor Karen L. Woolley BHMS Ed Hons PhD CMPP has conducted and published more than 100 research studies on patient involvement and ethical practices in medical communications. She brings to this work extensive experience as a university professor, hospital director, journal editor, and senior leader at an international pharmaceutical company and a medical communications company. Professor Woolley and patients co-created the world’s first “Plain Language Summaries of Publications Toolkit.” They also co-authored the first-ever systematic review of the benefits and risks of patient involvement in publications.
Thomas Gegeny MS, ELS, MWC, CMPP brings more than two decades of experience in medical writing, editing, and publication. He is very active in the American Medical Writers Association (AMWA), having served as its president and been involved in many of AMWA’s professional development activities. This includes helping to establish the first-ever certification program for professional medical writers. Gegeny has worked as a writer, editor, and director of several health initiatives. He now is at Envision Pharma Group where he met and worked with Karen Woolley.
Helen Osborne talks with Professor Woolley and Thomas Gegeny about:
- Patient authors. How including the perspective of a patient’s lived experience can help make medical publications more relevant, understandable, and accessible.
- Evidence-based ways to work with patient authors before, during, and after publication.
- Recommendations to include patient authors on many types of publications.
More ways to learn:
- “Patient involvement in preparing health research peer-reviewed publications or results summaries: a systematic review and evidence-based recommendations,” by Arnstein, Wadsworth, et al. BMC, June 2020. Includes 21 evidence-based recommendations on patient authorship. Plain language summary, too.
- “Patient Authorship: Three Key Questions (& Answers!) for Medical Communication Professionals [Part A],” ISMPP Newsletter May 2020.
- “Patient Authorship: Three Key Questions (& Answers!) for Medical Communication Professionals [Part B],” ISMPP Newsletter May 2020.
- “Establishing a patient publication steering committee: A case study with insights for medical writers,” by Feighery, Moutet, et al. Medical Writing, European Medical Writers Association.
- “GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research,” BMJ
- American Medical Writers Association (AMWA)
Health Literacy from A to Z: Practical Ways to Communicate Your Health Message, Second Edition (updated 2018), by Helen Osborne. Especially relevant to this podcast is Chapter 40, “X-tras” about innovative thinking and new ideas.
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Cliff Coleman M.D., M.P.H. is an Associate Professor of Family Medicine at Oregon Health & Science University. Dr. Coleman practices as a family medicine physician at a Federally Qualified Health Center. His clinical interests include treating medically complex individuals and underserved populations. Dr. Coleman is also a national health literacy expert. His ongoing research and teaching help lead the way toward health literacy competencies for all health professionals.
Iris Feinberg, PhD is the Associate Director of the Adult Literacy Research Center at Georgia State University. She is a health literacy researcher and research assistant professor in the Department of Learning Sciences. Dr. Feinberg and a team created the easy-to-read booklet about COVID-19, “Answers to Coronavirus Questions.”
Adam Weiss brings years of experience in podcasting, online video, and live broadcasting with a specific focus on scientific and medical content. He has hosted, launched, or produced podcasts for clients that include the Journal of the National Cancer Institute, the American Institute of Physics, and the Western Veterinary Conference. One of his early projects was starting the podcast series for Boston’s Museum of Science.
Sylvia Baedorf Kassis MPH, CYT focuses on many aspects of clinical research. Her work includes understanding the experience of research participants and incorporating their insights into study processes. Among her many accomplishments, Sylvia and her team created a health literacy website especially for clinical research stakeholders. This is part of a larger initiative from the Multi-Regional Clinical Trials (MRCT) Center of Brigham and Women’s Hospital and Harvard.
Shoshana Hahn-Goldberg, PhD is a scientist and project lead at the University Health Network’s OpenLab in Canada. She works with a multi-disciplinary team to discover and create solutions to issues in the health system using techniques that span design, research, and operational modeling. Shoshana Hanh-Goldberg manages the Patient Oriented Discharge Summaries (PODS) project that is being used at over 20 hospitals in Ontario, Canada.
Brian Wallace is President and Chief Executive Officer of the Coin Laundry Association and Executive Director of the LaundryCares Foundation. The Foundation’s mission is to provide laundry services, books, and literacy resources to those in need. This includes their Laundry Literacy Coalition–an initiative to promote early childhood literacy through America’s laundromats.
Susan Nathan, MD is a Geriatrician and Hospice and Palliative Medicine physician at VA Boston Healthcare System. She is an Instructor in Medicine at Harvard Medical School and adjunct Instructor in Medicine at Boston University School of Medicine. Dr. Nathan is the site director for the My Life, My Story Project at VA Boston.
Anne Thorndike MD, MPH is an Associate Professor of Medicine at Harvard Medical School and an internist at Massachusetts General Hospital. Much of her work focuses on individual and population-level behavioral interventions to prevent cardiometabolic disease. Through implementation research, Dr. Thorndike and her team demonstrated the effectiveness of traffic light labels, choice architecture, social norms, and financial incentives to promote healthy food choices in real-life settings, such as worksite cafeterias and supermarkets.
Reverend Christiaan Beukman, a native of the Netherlands, moved to the Boston area decades ago. He attended Harvard Divinity School and Andover-Newton Theological School and was the Protestant Chaplain and Diversity Specialist at a community hospital in Boston. He now serves as the Pastoral Ministries Manager at a large retirement community. He also is an Archdeacon in the Episcopal Church.
Katrien Goethals is Partner at the Institute for the Advancement of Health and Wellbeing: Dementia/Alzheimer’s. She lectures on dementia, facilitates groups for caregivers, and moderates a podcast that is part of a larger project to examine Alzheimer’s and Dementia from a public policy, public relations, and advocacy perspective. In all this work, Goethals brings her perspective as a family member and caregiver and world view from growing up in Belgium.
Rebecca Sudore MD is a geriatrician, palliative medicine physician, and health services researcher. She also is Professor of Medicine in the Division of Geriatrics at UCSF (University of California San Francisco). In addition, Dr. Sudore directs the Vulnerable Populations for Aging Research Core of the UCSF Older Adults Independence (Pepper) Center and co-directs the Innovation and Implementation Center in Aging & Palliative Care. Her research is focused on ways to improve advance care planning and medical decision-making for diverse, vulnerable older adults.
This podcast is unlike most others, for it is a conversation about Health Literacy Month with Helen Osborne and Michael Villaire.
Bridget Gaglio PhD, MPH is a Senior Program Officer for the Clinical Effectiveness and Decision Science program at the Patient-Centered Outcomes Research Institute (PCORI). She works to improve communication and dissemination of evidence-based information among patients and their healthcare providers. Gaglio has published papers on patient-centered communication, health literacy, and dissemination and implementation of health interventions. But this podcast isn’t about that. Rather, it’s about experiences and lessons Bridget and Helen each learned as patients.
Scott Ratzan M.D., M.P.A., M.A., has three decades of pioneering accomplishments in the U.S. and globally in health literacy, health communication, and strategic diplomacy. He is the founding Editor-in-Chief of the Journal of Health Communication: International Perspectives, and serves on the Board of Global Health for the National Academies of Science, Engineering and Medicine. Beyond his many publications and ongoing advocacy, Dr. Ratzan is co-author of the definition of health literacy that was adopted by the US Government and incorporated in the Affordable Care Act. He now taking on the challenge to improve “vaccine literacy.”
Audrey Riffenburgh Ph.D. has over 20 years of experience in health literacy and plain language. Dr. Riffenburgh is President of Health Literacy Connections (formerly Plain Language Works). Her firm helps healthcare systems, health-related agencies, and companies use health literacy and plain language to improve audience communication and meet organizational goals.
In this podcast first broadcast in 2008, Archie Willard shares a message that is as important today as it was then. I hope you enjoy and learn from this HLOL Classic.
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