Patient engagement in research occurs when patients meaningfully and actively take part in the conduct and decision-making at any stage of the research process from inception through impact evaluation. There is a paucity of validated measurement tools to evaluate whether interventions to improve patient engagement in research support their successful engagement.
This project aims to develop and validate the Patient Engagement In Research Scale (PEIRS) for use by patients who partner in health research (i.e. patient partners), and to evaluate the degree to which they are meaningfully and effectively engaged in the research process. PEIRS will be developed with patients for patients. Our key objectives are to generate an item-bank reflecting the elements of patients’ experiences as partners in research; use the most relevant experiences to develop the PEIRS; then, evaluate the validity and reliability of PEIRS.
We will used a mixed qualitative and quantitative study design. First, a secondary thematic analysis will be conducted on in-depth interviews of 20 patients with arthritis who have experience as research partners. An extensive list of items relevant to the quality of patient-researcher partnership will be developed. Second, we will invite 10 patient partners to participate in a Delphi process to prioritize, select, and modify the items. We will then conduct usability testing with another 10 patient partners to identify and address any problems in the provisional PEIRS. Third, we will recruit 100 patient partners from across Canada to test the PEIRS’s validity and reliability. Specifically, factor analysis will examine its structural validity. Concurrent validity of PEIRS will be tested against an established measure of overall satisfaction and experiences of the public and patients as project partners in a health system organization. In addition, we will assess the association between PEIRS scores and participants’ ratings of the “meaningfulness” of their engagement.
This research project employs an integrated knowledge translation approach, in which researchers and experienced patient partners are working together at every stage of the research process, from inception through knowledge translation. PEIRS will address an important barrier to advancing the science and practice of engaging patients in research, namely the lack of a validated measure to assess effectiveness of patient engagement strategies. As such, this research contributes to support meaningful engagement of patients in health research.