Recognizing patient partner contributions to health research: a mixed methods research protocol

Grace Fox; Dean A Fergusson; Stuart G Nicholls; Maureen Smith; Dawn Stacey; Manoj M Lalu

doi:10.1186/s40900-022-00354-w

Recognizing patient partner contributions to health research: a mixed methods research protocol

Res Involv Engagem. 2022 Jun 6;8(1):24. doi: 10.1186/s40900-022-00354-w.

Authors

Grace Fox¹, Dean A Fergusson^#^{2

3}, Stuart G Nicholls^{4

5}, Maureen Smith⁶, Dawn Stacey^{1

4

7}, Manoj M Lalu^#^{8

9

10}

Affiliations

¹ School of Epidemiology and Public Health, University of Ottawa, Ottawa, ON, Canada.
² Clinical Epidemiology Programs, The Ottawa Hospital Research Institute, Ottawa, ON, Canada. dafergusson@ohri.ca.
³ Departments of Medicine & Surgery, & School of Epidemiology and Public Health, University of Ottawa, Ottawa, ON, Canada. dafergusson@ohri.ca.
⁴ Clinical Epidemiology Programs, The Ottawa Hospital Research Institute, Ottawa, ON, Canada.
⁵ Office for Patient Engagement in Research Activities (OPERA), Ottawa Methods Centre, Ottawa Hospital Research Institute, Ottawa, ON, Canada.
⁶ Patient partner, Ottawa, ON, Canada.
⁷ School of Nursing, University of Ottawa, Ottawa, ON, Canada.
⁸ Clinical Epidemiology Programs, The Ottawa Hospital Research Institute, Ottawa, ON, Canada. mlalu@toh.ca.
⁹ Department of Cellular and Molecular Medicine, University of Ottawa, Ottawa, ON, Canada. mlalu@toh.ca.
¹⁰ Department of Anesthesiology and Pain Medicine, University of Ottawa, The Ottawa Hospital, Ottawa, ON, Canada. mlalu@toh.ca.

^# Contributed equally.

Abstract

Background: The overall aim of this program of research is to assess when/how patient partners are compensated financially for their contributions to health research. The research program consists of three studies to address the following questions: (1) What is the prevalence of reporting patient partner financial compensation? (2) What are researcher and institutional attitudes around patient partner financial compensation? (3) What are the current practices of patient partner financial compensation and what guidance exists to inform these practices?

Methods: In our first project, we will conduct a systematic review to assess the prevalence of reporting patient partner financial compensation and identify current financial compensation practices on an international scale. We will identify a cohort of published studies that have engaged patients as partners through a forward citation search of the Guidance for Reporting the Involvement of Patients and the Public (GRIPP I and II) checklists. We will extract details of financial compensation (type of financial compensation, amount, payment frequency etc.) and reported benefits, challenges, barriers and enablers to financially compensating patient partners. Quantitative data will be analyzed descriptively, and qualitative data will undergo thematic analysis. In our second project, we will conduct a cross-sectional survey of researchers who have engaged patient partners. We will also survey members of their affiliated institutions to gain further understanding of stakeholder experiences and attitudes with patient partner financial compensation. Survey responses will be analyzed by calculating prevalence. In our third project, we will conduct a scoping review to identify all published guidance and policy documents that guide patient partner financial compensation. Overton, the largest available online database of international policy documents, and the grey literature will be systematically searched. Data items will be extracted and presented descriptively. A comprehensive overview of guidance documents will be presented, which will represent a repository of resources that stakeholders can refer to when developing a financial compensation strategy.

Discussion: Our three studies will not only inform and assist patient partners and researchers by informing compensation strategies, but also support the inclusion of diverse perspectives. We will disseminate findings through traditional mediums (publications, conferences) as well as social media, non-technical summaries, and visual abstracts.

Keywords: Financial compensation; Patient engagement; Patient partner; Recognition.

Plain language summary

Background: Partnering with patients, caregivers and members of the public to co-develop and co-conduct research is becoming more accepted and prevalent. However, it is unclear how researchers recognize patient partners for their contributions to research projects. In this publication we outline a series of three studies that will help us better understand when and how patient partners are being financially compensated for their involvement.

Methods: First, we will conduct a review of the literature to identify an international group of researchers that engage patients as research partners. Evaluating these studies will give us an idea about how often patient partners are compensated, and the methods of compensation being used (e.g. offered gifts, cash, etc.). Second, we will survey researchers and institutions who have experience with patient engagement to ask them for more details about their experiences with patient partner compensation (i.e. challenges that they have encountered and their attitudes). Third, we will conduct another review to identify any guidance documents or policies that can help guide researchers through the processes of financially compensating patient partners. We will provide a summary of all of these guidance documents so that researchers, patient partners, and institutions have a one-stop-shop of resources.

Discussion: We hope that our three studies will inform and help researchers and patient partners navigate the processes for compensating patient engagement in research.