Engagement of older adults with multimorbidity as patient research partners: Lessons from a patient-oriented research program

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.

Engagement of people with lived experience of dementia advisory group and cross-cutting program: reflections on the first year

“…The EPLED Advisory Group expressed strong support for research that has potential for impact and, equally, frustration at the lack of uptake of the knowledge that already exists. Further, and more generally, a challenge to engagement in research continues to be the power imbalances that exist or may be perceived to exist between people with lived experience and researchers, attributed to factors such as differences in expertise and social status, economic hardship or poor health [ 37 ].…”

“…EPLED and the Advisory Group found successes in the challenges of our first year together. Now in our second year, the Advisory Group also identified the need to address ongoing questions about engagement in research, including: involving individuals and groups typically excluded from research [ 37 , 53 ] such as those from diverse racial, ethnic, 2SLGBTQIA + , language and Indigenous identities; building opportunities to engage in different types of research, including preclinical or biomedical research [ 54 ]; enabling patient led research [ 55 ]; and evaluating our program to improve EPLED and better support people with lived experience and CCNA researchers and trainees. We must also work to address barriers to involving people living with dementia; in the Advisory Group, care partners outnumber people living with dementia, and both offer important perspectives that we recognize are different [ 56 – 58 ].…”

The impacts of partnering with cancer patients in palliative care research: a systematic review and meta-synthesis

“…Our definition of 'patient' is linked and comparable with other studies using PE in Alberta. 13,22 We used and modified the Art and Humanities Research Council's (AHRC) 23 definition of 'impacts' to include anything that influenced the research and affected patient partners and/or researchers at an individual, community, and/or policy development level. We used the SPIDER framework 24 to operationalize our research question.…”

My Wellbeing Journal: Development of a communication and goal‐setting tool to improve care for older adults with chronic conditions and multimorbidity

“…Although we strived to ensure equal participation, we cannot claim that we overcame the power imbalance that may exist or be perceived to exist between researchers, professionals and consumer partners 66 . We used various documented strategies to attempt to equalise this power imbalance, including providing financial compensation for consumer partners' time and expertise at all stages, sharing information and decision‐making power with consumer partners (e.g., involving consumers in prototyping and user testing; using voting, prioritisation and scenario‐based decision‐making; appointing consumer coresearchers), and involving an external facilitator to ensure equal participation of consumers during meetings 38 …”