Patient and Public Partners in Writing of Lay Summaries
Supporting Patient and Public Partners in Writing of Lay Summaries of Scientific Evidence in Healthcare: A Scoping Review
Project Status:In progress
Patient and Public Partner
Samantha Seaton, Adora Chui
Canadian Institutes of Health Research (CIHR) through the Strategy for Patient-Oriented Research (SPOR) Evidence Alliance
To describe and summarize the extent and nature of literature specific to supporting patient and public partners in writing of lay summaries; to summarize guidance for the writing of lay summaries; to contextualize guidance for writing lay summaries to the needs and preferences of patient and public partners; and to develop a patient and public-informed tool to support patient and public involvement in the writing of lay summaries of scientific evidence.
Subsequent to a 3 year term at a national accounting firm, JoAnne worked as an analyst in the public/private sector. The diagnosis of her child’s rare disorder led to a career pivot; doing so allowed for the time to engage with similarly diagnosed families and to watch (painfully slow) scientific discovery unfold over the years.
Her interest in research brought her to joining a Research Network in 2017. This was timely; opportunities for patient engagement were becoming more apparent.
To further her capacity, she pursued training through St. Michael’s Hospital KT Program PIR Course, McMaster University-KBHN FER Course, and other Patient and Public Research Partnership offerings.
Recent and on-going activities are diverse. These include providing the patient perspective at various stages of the research process; Beta tester for PORCCH; reviewing lay summaries; initiating a newsletter for members of PAN (Patient Advisors Network); serving on a Grant Review panel, on a Network KT Committee , on a project PFAC / RCT liaison; serving as a patient –partner on a Global database encompassing 2 rare diseases as well as on TACC (Transforming Autism Care Consortium); serving as member of MNI/H (Montreal Neurological Institute/Hospital) Patients Committee.
To keep inspired, she enjoys the manageable bites that “Behavioural Neuroscience Daily” brings. When interest is piqued but expertise lacking, she doesn’t hesitate to reach out to her designated champions of POR at academic and research institutions with questions or queries.
Paramount to JoAnne is patient partnership in helping set Canadian research priorities. To this end, she believes in academic persistence; that knowledge is a driver of empowerment and resilience.
Heather Colquhoun is an Associate Professor in the Occupational Science and Occupational Therapy Department at the University of Toronto. She has over 29 years of experience as an Occupational Therapist and researcher. Her research focuses on the science of knowledge translation (KT) with an emphasis on the identification, prioritization and closing of evidence-to-practice gaps in healthcare.
Dr. Colquhoun’s research program includes application of behaviour change theory to implementation problems, the use of theory and theoretical constructs to design and understand interventions, optimizing audit and feedback as a KT intervention, investigation of reporting and terminology issues in KT science, and exploring methods of knowledge user engagement and barriers assessment for intervention design. She also has experience in knowledge syntheses methods including systematic and scoping reviews, including developing best practice methods for the conduct and reporting of scoping reviews.
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Zarshenas S, Mosel J, Chui A, Seaton S, Singh H, Moroz S, Khan T, Colquhoun H. Supporting patient and public partners in writing lay summaries of scientific evidence in healthcare: a scoping review protocol. BMJ Open 2022;12:e062981. doi: 10.1136/bmjopen-2022-062981.