Grant: Planning and Dissemination Grant - Institute Community Support

A number of guidelines suggest that patient partners should be recognized or compensated (i.e., offered something in exchange for involvement) for their role in research. By offering compensation, researchers are demonstrating appreciation for patient partner's time and expertise, which can support meaningful and long-term patient engagement. Financial compensation, specifically, has been suggested as a method to improve equity, diversity and inclusion within patient engagement by facilitating the involvement of patient partners who may face financial barriers to engagement and are thus underrepresented within engagement activities. Our recent work found that 1) non-financial compensation is reported more often than financial compensation, 2) there are financial and legal considerations when offering or accepting compensation, and 3) despite the existence of many guidance documents, a perceived lack of guidance or policy was a key barrier for researchers and institutions in offering compensation. These findings suggest that compensation has implications beyond those who are offering or accepting compensation (i.e. researchers and patients). It is crucial to consider the perspectives of institutional administration, financial and legal experts and to better understand challenges faced by each. To date input and perspectives have focused solely on patients and researchers, thus missing this wider perspective. Ultimately, we need to gain a better understanding of partner (i.e., patient partners, researcher, institutions, legal and financial expert) challenges to compensation in order to come up with solutions to improve the uptake of compensation practices. This grant will allow us to organize a series of activities culminating in a 2-day meeting that will bring together a diverse group of individuals, generate discussions and identify solutions to experienced challenges.