Abstract
Background:Patient “engagement” in health research broadly refers to including people with lived experience in the research process. Although previous reviews have systematically summarized approaches to engaging older adults and their caregivers in health research, there is currently little guidance on how to meaningfully engage older adults with multimorbidity as research partners.Objectives:This paper describes the lessons learned from a patient-oriented research program, the Aging, Community and Health Research Unit (ACHRU), on how to engage older adults with multimorbidity as research partners. Over the past 7-years, over 40 older adults from across Canada have been involved in 17 ACHRU projects as patient research partners.Methods:We developed this list of lessons learned through iterative consensus building with ACHRU researchers and patient partners. We then met to collectively identify and summarize the reported successes, challenges and lessons learned from the experience of engaging older adults with multimorbidity as research partners.Results:ACHRU researchers reported engaging older adult partners across many phases of the research process. Five challenges and lessons learned were identified: 1) actively finding patient partners who reflect the diversity of older adults with multimorbidity, 2) developing strong working relationships with patient partners, 3) providing education and support for both patient partners and researchers, 4) using flexible approaches for engaging patients, and 5) securing adequate resources to enable meaningful engagement.Conclusion:The lessons learned through this work may provide guidance to researchers on how to facilitate meaningful engagement of this vulnerable and understudied subgroup in the patient engagement literature.
Highlights
Patient “engagement” in health research broadly refers to including people with lived experience in the research process
The aim of this paper is to describe the successes, challenges, and lessons learned from this patient-oriented program of research on how to effectively engage older adults with multimorbidity as patient research partners
We used multiple strategies to find patient partners with personal knowledge and life experience with multimorbidity or the specific health condition being studied. This included: 1) identifying patient partners through our existing networks, 2) identifying patient partners who previously participated in our studies as research participants, 3) partnering with organizations who serve older adults with multimorbidity who assisted us in finding patient partners, and 4) leveraging relationships with other health care professionals within the health care system
Summary
Patient “engagement” in health research broadly refers to including people with lived experience in the research process. The moral argument is that research conducted on people without their input is unethical, in marginalized communities.[4,5] The second argument for patient engagement is the belief that patients’ lived experiences of health care offers unique and valuable perspectives that can increase the relevance, impact, and quality of research.[3,4,6] Better understanding and incorporation of patient perspectives through early and continuous partnerships can result in patient-defined priorities, which are shown to lead to improved health outcomes, and a sustainable, accessible, and equitable healthcare system.[3,7,8] The engagement of patients as partners in the design, implementation and evaluation of health research is an expectation of several major international and national funding programs.[3,9]
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