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

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 guidan...

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Main Authors: Maureen Markle-Reid, Rebecca Ganann, Jenny Ploeg, Gail Heald-Taylor, Laurie Kennedy, C McAiney, Ruta Valaitis
Format: Article
Language:English
Published: SAGE Publishing 2021-03-01
Series:Journal of Comorbidity
Online Access:https://doi.org/10.1177/2633556521999508
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spelling doaj-d2ae8ad416064f9c83ad7837261e88a82021-03-17T21:33:28ZengSAGE PublishingJournal of Comorbidity2235-042X2021-03-011110.1177/2633556521999508Engagement of older adults with multimorbidity as patient research partners: Lessons from a patient-oriented research programMaureen Markle-Reid0Rebecca Ganann1Jenny Ploeg2Gail Heald-Taylor3Laurie Kennedy4C McAiney5Ruta Valaitis6 McMaster Institute for Research on Aging, McMaster University, Hamilton, Ontario, Canada McMaster Institute for Research on Aging, McMaster University, Hamilton, Ontario, Canada Department of Health, Aging and Society, McMaster University, Hamilton, Ontario, Canada Aging, Community and Health Research Unit, , Hamilton, Ontario, Canada Aging, Community and Health Research Unit, , Hamilton, Ontario, Canada Murray Alzheimer Research & Education Program (MAREP), , Waterloo, Ontario, Canada McMaster Institute for Research on Aging, McMaster University, Hamilton, Ontario, CanadaBackground: 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.https://doi.org/10.1177/2633556521999508
collection DOAJ
language English
format Article
sources DOAJ
author Maureen Markle-Reid
Rebecca Ganann
Jenny Ploeg
Gail Heald-Taylor
Laurie Kennedy
C McAiney
Ruta Valaitis
spellingShingle Maureen Markle-Reid
Rebecca Ganann
Jenny Ploeg
Gail Heald-Taylor
Laurie Kennedy
C McAiney
Ruta Valaitis
Engagement of older adults with multimorbidity as patient research partners: Lessons from a patient-oriented research program
Journal of Comorbidity
author_facet Maureen Markle-Reid
Rebecca Ganann
Jenny Ploeg
Gail Heald-Taylor
Laurie Kennedy
C McAiney
Ruta Valaitis
author_sort Maureen Markle-Reid
title Engagement of older adults with multimorbidity as patient research partners: Lessons from a patient-oriented research program
title_short Engagement of older adults with multimorbidity as patient research partners: Lessons from a patient-oriented research program
title_full Engagement of older adults with multimorbidity as patient research partners: Lessons from a patient-oriented research program
title_fullStr Engagement of older adults with multimorbidity as patient research partners: Lessons from a patient-oriented research program
title_full_unstemmed Engagement of older adults with multimorbidity as patient research partners: Lessons from a patient-oriented research program
title_sort engagement of older adults with multimorbidity as patient research partners: lessons from a patient-oriented research program
publisher SAGE Publishing
series Journal of Comorbidity
issn 2235-042X
publishDate 2021-03-01
description 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.
url https://doi.org/10.1177/2633556521999508
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