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

Abstract

Plain English 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.

Keywords

• Patient engagement
• Patient partner
• Recognition
• Financial compensation