Patient partner perspectives on compensation: Insights from the Canadian Patient Partner Survey

• Published in: Health expectations : an international journal of public participation in health care and health policy 2024-02, Vol.27 (1), p.e13971-n/a
• Main Authors: Dhamanaskar, Roma, Tripp, Laura, Vanstone, Meredith, Canfield, Carolyn, Levasseur, Mary Anne, Abelson, Julia
• Format: Article
• Language: English
• Subjects: Accountability; Adult; Aged; Ambivalence; Attitudes; Canada; Caregivers; Caregivers - psychology; Compensation; Compensation and Redress; Consultants; Consumer organizations; Content analysis; Fairness; Female; Gifts; health policy; healthcare; Humans; Male; Middle Aged; Original; Participation; patient engagement; patient involvement; patient partnership; Patients; Polls & surveys; Qualitative analysis; Questions; Reimbursement; Relatives; Respondents; Salaries and Fringe Benefits; Skills; Social networks; Surveys; Surveys and Questionnaires; Translation; Volunteers; Wages & salaries
• ISSN: 1369-6513; 1369-7625; 1369-7625
• DOI: 10.1111/hex.13971

Introduction There is a growing role for patients, family members and caregivers as consultants, collaborators and partners in health system settings in Canada. However, compensation for this role is not systematized. When offered, it varies in both type (e.g., one‐time honorarium, salary) and amount. Further, broad‐based views of patient partners on compensation are still unknown. We aimed to describe the types and frequency of compensation patient partners have been offered and their attitudes towards compensation. Methods This study uses data from the Canadian Patient Partner Study (CPPS) survey. The survey gathered the experiences and perspectives of those who self‐identified as patient partners working across the Canadian health system. Three questions were about compensation, asking what types of compensation participants had been offered, if they had ever refused compensation, and whether they felt adequately compensated. The latter two questions included open‐text comments in addition to menu‐based and scaled response options. Basic frequencies were performed for all questions and open‐text comments were analyzed through inductive qualitative content analysis. Results A total of 603 individuals participated in the CPPS survey. Most respondents were never or rarely offered salary (81%), honorarium (64%), gift cards (80%) or material gifts (93%) while half were offered conference registration and expenses at least sometimes. A total of 129 (26%) of 499 respondents reported refusing compensation. Of 511 respondents, half felt adequately compensated always or often, and half only sometimes, rarely or never. Open‐text comments revealed positive, ambivalent and negative attitudes towards compensation. Attitudes were framed by perceptions about their role, sentiments of giving back to the health system, feelings of acknowledgement, practical considerations, values of fairness and equity and accountability relationships. Conclusions Our findings confirm that compensation is not standardized in Canada. Half of survey respondents routinely feel inadequately compensated. Patient partners have diverse views of what constitutes adequate compensation inclusive of personal considerations such as a preference for volunteering, and broader concerns such as promoting equity in patient partnership. Organizations should attempt to ensure that compensation practices are clear, transparent and attentive to patient partners' unique contexts. Patient Contribution Two pati