Engaging Patient and Public Research Partners in the Aging, Community & Health Research Unit (ACHRU) Community Partnership Program for Diabetes Self-Management for Older Adults –

Canada

Ron Beleno, Patient and Public Research Partner, ACHRUMcMaster University

@rb33canada

Rebecca Ganann, RN, PhD Co-Lead Investigator, ACHRUAssistant Professor, School of Nursing McMaster University

@rebeccaganann@achru_mcmaster

https://achru.mcmaster.ca

Co-Principal Investigators: Jenny Ploeg, Maureen Markle-Reid, Ruta Valaitis

CO-PRINCIPAL INVESTIGATORS Patrick Dicerni (ON, KU Policy) Kathryn Fisher (ON) Rebecca Ganann (ON) Andrea Gruneir (AB) William Johnson (ON, KU Patient) France Légaré (QC) Lynne Mansell (AB, KU Patient) William Montelpare (PEI) Patricia Reid (ON, KU Patient) Frank Tang (ON, KU Patient) Ross Upshur (ON, KU Practice)

CO-INVESTIGATORS Ali Ben Charif (QC) Johanne Blais (QC) Dean Eurich (AB) Amiram Gafni (ON) Gary Lewis (ON) Janet MacIntyre (PEI) Lori MacCallum (ON) Jean-Sebastien Paquette (QC) Marie-Ève Poitras (QC) Janet Pritchard (ON) Angela Riveroll (PEI) Cheryl Sadowski (AB) Diana Sherifali (ON) Lehana Thabane (ON) Tyler Williamson (AB)

Funding support

CIHR Strategy for Patient-Oriented Research (SPOR) Primary and Integrated Healthcare Innovations (PIHCI) Network: Programmatic Grant (KPG-156883) (2018-22)

Diabetes Action Canada McMaster Institute for Research on Aging Scarborough Health Network Scarborough Health Network Foundation Fonds de recherche du Québec – Santé (FRQS) Réseau-1-Québec, SPOR PIHCIN Quebec

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Partners and Supporters

Diabetes Action Canada BeACCoN Carefirst Seniors and

Community Services Association

Centre Intégré de santé et de services sociaux de Lanaudière – GMFU Saint-Charles Borromèe

Centre d’action bénévole Émilie-Gamelin

Centre Intégré universitaire de santé et de services sociaux de la Capitale-Nationale –GFMU-Saint-François D’Assise

Fédération régionale des OBNL d'Habitation de Québec, Chaudière-Appalaches (FROHQC)

Health and Wellness PEI Health PEI Ontario MOHLTC Toronto Central LHIN Central East LHIN McMaster University School of

Nursing Quebec SPOR Support Unit Ontario SPOR Support Unit Scarborough Health Network St. Michael’s Hospital Toronto Central YMCA

We also thank all of our Community Advisory Board Members in ON, QC, and PEI

Agenda

• Share information about our approach to engaging Patient and Public Research Partners in this program of research

• Share lessons learned about engaging Patient and Public Research Partners in this program of research

Background

Older adults with diabetes and other chronic conditions have poorer health and higher use of health services compared to older adults with diabetes alone.

ACHRU Community Partnership Program (CPP) for diabetes self-management is patient centred and community-based To improve care delivery and outcomes for older adults with

diabetes and other chronic conditions and to support family caregivers

Patient and Public Engagement in the design, implementation and evaluation of the ACHRU-CPP holds promise.

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Origins of the ACHRU-CPP Program

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Current Program

Current Program: Objectives and Design

• Co-design adaptations to ACHRU-CPP in collaboration with older adults, family/friend caregivers, and providers

• Examine patient and caregiver engagement in the research process

• Examine implementation and effectiveness of the ACHRU-CPP on health outcomes and service costs in diverse populations and settings using a pragmatic, randomized controlled trial design

• Explore patient, caregiver, and provider experiences with the ACHRU-CPP

• Plan for scale-up of the ACHRU-CPP

Study Participants

https://achru.mcmaster.ca 9

• Inclusiveness of diverse populations and settings

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Patient and Public Engagement Approach within ACHRU-CPP

• Builds on ACHRU’s expertise in meaningful patient and community engagement

• Patients and providers provide instrumental input into co-designing, refining and adapting the program

• We actively embed patients in all governance structures as experiential partners with researchers, providers, and policy-makers.

https://achru.mcmaster.ca 11

ACHRU-CPP Governance Structure

COMMUNITYADVISORY BOARDS (CABS)Representative Members

Patient & Public Research Partners

Primary Care Local health and social services RCT Provincial Co-Leads &

Research Coordinator Patient Engagement Co-Leads

STEERING COMMITTEE

Representative Members Principal KUs (Patient/Policy/

Practice) Patient & Public Research

Partners Representatives of Diabetes

Action Canada Study 1 and RCT Co-Leads Patient Engagement Co-Leads

AB

STEERINGCOMMITTEE

PEION

QC

CAB 1:Toronto

CAB 2:Scarborough

CAB 3: Lanaudiere

CAB 4: Quebec City

CAB 5:Charlottetown & Summerside

Study 1 Working Group

STUDY 1 WORKING GROUP

Representative Members Patient & Public Research

Partners Principal KUs Study 1 Co-Leads

Development of Community Advisory Boards

Patient Engagement Sub-committee:• Led by Patient Engagement Co-lead Investigators (ON);

included Co-investigators and provincial Research Coordinators from Ontario, Quebec and Prince Edward Island

• Regular meetings to support strategies for patient engagement and planning and development of local CABs in each site (one CAB in PEI)

Development of Community Advisory Boards

– Guide on Community Advisory Boards and Patient Engagement for Provincial Co-Leads, Research Coordinators and Co-Investigators

– Orientation for Patient and Public Research Partners (with provincial research coordinator and researcher)

Patient and Public Engagement:Successes and Challenges

Successes:

• Insider perspective - enhanced knowledge of and linkage to local/regional health and social services that can support older adults who are living in the community with diabetes and other chronic conditions

• Ongoing inclusion of patient, caregiver and community voice

Challenges:

• Identifying patient and caregiver research partners to contribute to the CABs

Patient and Public Research Partner: Ron Beleno

• Why did you become involved in this research?• From your perspective, what has been the value for you

in partnering with this team?• As a patient partner, what insights have you gained

through partnering in this study?• What recommendations do you have to improve patient

engagement?

Quotation from a Patient Partner taken from a focus group with CAB members

“I appreciate that the team’s inclusive of the patient voice at all levels of project design, the research questions, what will constitute the roll-out and I think they’ve demonstrated a really elevated sense of engagement with patients as equal partners. It’s really person-centered.”

Quotation from a Patient Partner taken from a focus group with CAB members

“I think as a patient I’m encouraged, not that our stories are being used but that our stories are informing a sense of urgency and the importance of the work you’re doing. I think when patients are welcome to share their stories, and in a supportive environment where their experience is valued or the sensitivity of the material is respected and there’s space to pause and reflect and for people to get emotional or for people to reflect on mistakes or successes then I sense and suspect that the research team sort of validates why they’re doing the research they’re doing that it’s dreadfully important. It’s not an interesting problem. It’s an urgent, imperative problem.”

QUESTIONS?