Engaging People with Lived Experience on Advisory Councils of a National Not-for-profit: an Integrated Knowledge Translation Case Study of Heart & Stroke Mission Critical Area Councils

Overview

Journal Health Res Policy Syst

Publisher Biomed Central

Specialties Health Services
Public Health

Date 2022 May 23

PMID 35606768

Authors

Krystina B Lewis

Nedra Peter

Ian D Graham

Anita Kothari

Affiliations

Soon will be listed here.

Abstract

Background: In 2018, the Heart and Stroke Foundation of Canada transformed its approach to organizational strategic planning and priority-setting. The goal was to generate impact from bench to bedside to community, to improve the health of Canadians. It engaged researchers, clinician scientists, health systems leaders, and community members including people with lived experience (PWLE) on six Mission Critical Area (MCA) councils, each of which was co-chaired by a researcher or clinician scientist and a person with lived experience. Together, council members were tasked with providing advice to Heart & Stroke about the most relevant and impactful priorities of our time. The aim of this research was to explore the value of the MCA councils to Heart & Stroke, and to council members themselves. The research questions focused on understanding the process of managing and participating on the councils, the challenges and outcomes.

Methods: Using an integrated knowledge translation approach, we conducted a case study with developmental evaluation over a 2-year time period (2018-2020). We collected qualitative data from various sources (Heart & Stroke team responsible for managing the councils, council co-chairs, council members, and key informants). We collected documents and analysed them for contextual background.

Results: Participants noted that the MCA councils continuously evolved over the 2 years in various ways: from an uncertain direction to a concrete one, better integrating the voice of PWLE, and increased cohesiveness within and across MCA councils. This evolution was achieved in parallel with successes and challenges at three levels: the MCA councils and its members, Heart & Stroke, and Canadians. The MCA councils were disbanded in 2020, yet learnings, developments, initiatives and established partnerships remain as their legacy.

Conclusions: Heart & Stroke's intended objectives for the MCA councils, to promote engagement and dialogue among community members including PWLE, clinician scientists, and researchers, and to provide advice into Heart & Stroke's strategic renewal process, were achieved. This collaborative structure and process for PWLE engagement within a community of multidisciplinary clinician scientists and researchers is possible yet requires flexibility, commitment to stakeholder relationship management, and considerable resources. These findings may be helpful for other not-for-profit and funding organizations interested in engaging the public and other stakeholders into their organizational activities.

References

Graham I, Tetroe J . How to translate health research knowledge into effective healthcare action. Healthc Q. 2007; 10(3):20-2. DOI: 10.12927/hcq..18919. View

Nguyen T, Graham I, Mrklas K, Bowen S, Cargo M, Estabrooks C . How does integrated knowledge translation (IKT) compare to other collaborative research approaches to generating and translating knowledge? Learning from experts in the field. Health Res Policy Syst. 2020; 18(1):35. PMC: 7106699. DOI: 10.1186/s12961-020-0539-6. View

Boutin M, Dewulf L, Hoos A, Geissler J, Todaro V, Schneider R . Culture and Process Change as a Priority for Patient Engagement in Medicines Development. Ther Innov Regul Sci. 2017; 51(1):29-38. PMC: 5302122. DOI: 10.1177/2168479016659104. View

Sharma A, Knox M, Mleczko V, Olayiwola J . The impact of patient advisors on healthcare outcomes: a systematic review. BMC Health Serv Res. 2017; 17(1):693. PMC: 5651621. DOI: 10.1186/s12913-017-2630-4. View

Ludwig C, Graham I, Gifford W, Lavoie J, Stacey D . Partnering with frail or seriously ill patients in research: a systematic review. Res Involv Engagem. 2020; 6:52. PMC: 7488581. DOI: 10.1186/s40900-020-00225-2. View

Manafo E, Petermann L, Mason-Lai P, Vandall-Walker V . Patient engagement in Canada: a scoping review of the 'how' and 'what' of patient engagement in health research. Health Res Policy Syst. 2018; 16(1):5. PMC: 5804082. DOI: 10.1186/s12961-018-0282-4. View

Oliver K, Kothari A, Mays N . The dark side of coproduction: do the costs outweigh the benefits for health research?. Health Res Policy Syst. 2019; 17(1):33. PMC: 6437844. DOI: 10.1186/s12961-019-0432-3. View

Burns K, Bellows M, Eigenseher C, Gallivan J . 'Practical' resources to support patient and family engagement in healthcare decisions: a scoping review. BMC Health Serv Res. 2014; 14:175. PMC: 4005635. DOI: 10.1186/1472-6963-14-175. View

Bombard Y, Baker G, Orlando E, Fancott C, Bhatia P, Casalino S . Engaging patients to improve quality of care: a systematic review. Implement Sci. 2018; 13(1):98. PMC: 6060529. DOI: 10.1186/s13012-018-0784-z. View

10.

OBrien B, Harris I, Beckman T, Reed D, Cook D . Standards for reporting qualitative research: a synthesis of recommendations. Acad Med. 2014; 89(9):1245-51. DOI: 10.1097/ACM.0000000000000388. View

11.

Gagliardi A, Kothari A, Graham I . Research agenda for integrated knowledge translation (IKT) in healthcare: what we know and do not yet know. J Epidemiol Community Health. 2016; 71(2):105-106. PMC: 5284465. DOI: 10.1136/jech-2016-207743. View

12.

Hibbard J, Greene J . What the evidence shows about patient activation: better health outcomes and care experiences; fewer data on costs. Health Aff (Millwood). 2013; 32(2):207-14. DOI: 10.1377/hlthaff.2012.1061. View

13.

Chudyk A, Waldman C, Horrill T, Demczuk L, Shimmin C, Stoddard R . Models and frameworks of patient engagement in health services research: a scoping review protocol. Res Involv Engagem. 2018; 4:28. PMC: 6130061. DOI: 10.1186/s40900-018-0111-5. View

14.

Manafo E, Petermann L, Vandall-Walker V, Mason-Lai P . Patient and public engagement in priority setting: A systematic rapid review of the literature. PLoS One. 2018; 13(3):e0193579. PMC: 5834195. DOI: 10.1371/journal.pone.0193579. View

15.

Greenhalgh T, Jackson C, Shaw S, Janamian T . Achieving Research Impact Through Co-creation in Community-Based Health Services: Literature Review and Case Study. Milbank Q. 2016; 94(2):392-429. PMC: 4911728. DOI: 10.1111/1468-0009.12197. View

16.

Bird M, Ouellette C, Whitmore C, Li L, Nair K, McGillion M . Preparing for patient partnership: A scoping review of patient partner engagement and evaluation in research. Health Expect. 2020; 23(3):523-539. PMC: 7321722. DOI: 10.1111/hex.13040. View

17.

Hamilton C, Hoens A, McQuitty S, McKinnon A, English K, Backman C . Development and pre-testing of the Patient Engagement In Research Scale (PEIRS) to assess the quality of engagement from a patient perspective. PLoS One. 2018; 13(11):e0206588. PMC: 6211727. DOI: 10.1371/journal.pone.0206588. View

18.

Carman K, Dardess P, Maurer M, Sofaer S, Adams K, Bechtel C . Patient and family engagement: a framework for understanding the elements and developing interventions and policies. Health Aff (Millwood). 2013; 32(2):223-31. DOI: 10.1377/hlthaff.2012.1133. View

19.

Boylan A, Locock L, Thomson R, Staniszewska S . "About sixty per cent I want to do it": Health researchers' attitudes to, and experiences of, patient and public involvement (PPI)-A qualitative interview study. Health Expect. 2019; 22(4):721-730. PMC: 6737750. DOI: 10.1111/hex.12883. View

20.

Jull J, Giles A, Graham I . Community-based participatory research and integrated knowledge translation: advancing the co-creation of knowledge. Implement Sci. 2017; 12(1):150. PMC: 5735911. DOI: 10.1186/s13012-017-0696-3. View