Research on Transforming Health Research through Patient Engagement - released Dec 17, 2021

[Alies Maybee]

Just released, a new study in English Dec 17, 2021: Transforming the health research system: Embedding patient engagement in decision-making by Lidewy Eva Vat, a Dutch researcher who worked for several years with the NL SPOR Support Unit supporting the patients and caregivers involved as partners in research. I got to know Eva (as she is known in Canada) at that time. We connected over a shared interest in patient engagement in research and, since I am half-Dutch, in a shared cultural background. Eva returned to the Netherlands to do her PhD and a number of us from Canada were involved with her research. She got to know about PAN and is a greater supporter. She has donated to PAN which is helping us deliver the Patient Leadership course starting in Feb 2022.

For a shorter read, here are the slides she used to present her work.
English_version_Plain_language_summary_Lidewij_Vat.pdf

Taken from the abstract:
"The two initiatives described in this thesis, (1) Canada's Strategy for Patient-Oriented Research (SPOR) and (2) Patients Active In Research and Dialogues for an Improved Generation of Medicine (PARADIGM), provided insights into strategies actors can employ to enable and advance patient engagement. We identified and implemented three enabling strategies for system change:

(1) Matchmaking support for connecting actors (Chapter 4)
(2) Training to facilitate competence building (Chapter 5)
(3) Monitoring and evaluation to facilitate collective learning (Chapter 6, 7, 8, 9)

As part of these strategies, we built infrastructures to support patient engagement ... As a result, the perspectives and attitudes of participating actors towards experiential knowledge and the value of patient engagement changed. In practice, new relationships were formed, competencies improved, and new research practices in which patients are partners emerged. .... This thesis concludes with suggestions of strategies to further facilitate the embedding of patient engagement and possible metrics to track change over time (Chapter 10). ...we aimed to inspire and support the shift towards a more needs-oriented health research system. By collaboratively changing the research culture, structure and practice, we can create a system that co-produces knowledge that can be used for better health."