Patient Authors of Research Studies (HLOL #211)

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. […]

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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:

“Patients in Publications,” an open access 4-module training course to support patients to become authors. From WECAN (a cancer collaborative based in Europe) and Envision Pharma Group.
“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.

Read the transcript of this podcast

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