Choosing Healthcare Options by Involving Canada’s Elderly: The CHOICE Knowledge Synthesis Project

Through a realist synthesis the project team learned from other patient and citizen engagement initiatives, from previous research and most importantly, from seniors, families and caregivers themselves.

Research Results

Findings: The initial search generated over 15,689 articles; of these, 652 were pertinent to health care decision-making, and 546 were identified as relevant for research and planning and were retained for further review. Communication came forward as a key recommendation for meaningful open honest and trusting engagement with patients/participants. We have developed guidelines and recommendations for creating productive partnerships in both healthcare decision-making and research/planning.

Impact of findings: The frameworks developed provide guidance for engaging seniors in clinical decision-making and in health research and planning, which can improve the care of this population. Framework for engaging older adults in clinical decision-making encompasses strong interactions between patients, social support networks and providers promote seamless coordination of care, access to services and continuity of care to occur across the complex system. Framework for engaging older adults in healthcare research and planning encompasses the development of a relationship between all stakeholders and system level (environment) considerations are essential to capture the breadth of the contextual influence before planning any engagement opportunity.

About the Project

The Choosing Healthcare Options by Involving Canada’s Elderly (CHOICE) Knowledge Synthesis Project synthesized current knowledge on patient, family and caregiver engagement to develop best practice guidelines and recommendations for engaging older patients and their families and caregivers in health care research, planning and clinical decision making.

Project Team

Principal Investigator:

Paul Stolee, PhD, MSc, MPA, BA — University of Waterloo

Co-Investigators:

Veronique Boscart, RN, MScN, MEd, PhD — Conestoga College

George Heckman, MD, MSc, FRCPC — University of Waterloo

Knowledge Users and Partners:

Mireille Brosseau, MA — Canadian Foundation for Healthcare Improvement (CFHI)

Sholom Glouberman, PhD — Patients Canada

Maria Judd, MSE — Canadian Foundation for Healthcare Improvement (CFHI)

Project Contact: Dr. Paul Stolee — stolee@waterloo.ca

KS 2013-08

Key words: health care; decision making; public; engagement

Key Findings for Families

Key Findings for Families

  • This study provides a way of understanding how to engage seniors in decision-making and health research
  • Engaging seniors, family members and caregivers is complex and needs to take into consideration the factors at the system level, patient/participant level and provider/investigator level
  • Communication is important to develop an open, honest and trusting relationship

The frameworks developed provide guidance for engaging seniors in clinical decision-making and in health research and planning, which can improve the care of this population.

  • Framework for engaging older adults in clinical decision-making
  • Framework for engaging older adults in healthcare research and planning

Why This Matters

It is important that patients and caregivers are active partners in their health care, health care research and health care planning to make sure they receive the best care. But, it can be difficult to do this and there is not much guidance on how to make this happen.

About This Study

  • This study used realist review methods. A realist review is a way to find all research on engaging patients, families and caregivers in health care
  • Experts, older adults and their family/caregivers were consulted to develop the frameworks
Key Findings for Policy Makers

Key Findings for Policy

  • A framework for engagement of seniors in decision-making and health research has been developed
  • The framework acknowledges that engagement is complex and proposes strategies that are context specific and need to be considered at a system level, patient/participant level and provider/investigator level
  • Communication is key to development of an open, honest and trusting relationship

The frameworks developed provide guidance for engaging seniors in clinical decision-making and in health research and planning, which can improve the care of this population

  • Framework for engaging older adults in clinical decision-making. Strong interactions between patients, social support networks and providers promote seamless coordination of care, access to services and continuity of care to occur across the complex system
  • Framework for engaging older adults in healthcare research and planning. The development of a relationship between all stakeholders and system level (environment) considerations are essential to capture the breadth of the contextual influence before planning any engagement opportunity.

Why This Study was Needed

Patient and caregiver engagement is increasingly being recognized as a crucial element in health care reform. However, limited research has focused on engaging seniors – the fastest growing segment of the population and the greatest consumers of health resources. To make improvements to the health care system, seniors and their families need to be engaged as active partners in health care research, planning and decision-making.

Study Summary

  • This study was a realist review of theoretical frameworks from six peer-reviewed databases and the grey literature. The search generated 15,683 articles; 663 were pertinent to clinical health care decision-making and 546 were related to research and planning
  • Expert consultation was conducted through interviews with academics, and older adults and their caregivers to further synthesize the evidence and develop the framework. The synthesis guided the development of the frameworks for engagement of older adults, along with strategies and principles that should be implemented in various settings
Key Findings for Researchers

Key Findings for Researchers

  •  A framework for engagement of seniors in decision-making and health research has been developed
  • The framework acknowledges that engagement is complex and proposes strategies that are context specific and need to be considered at a system level, patient/participant level and provider/investigator level
  • Communication is key to development of an open, honest and trusting relationship

The frameworks developed provide guidance for engaging seniors in clinical decision-making and in health research and planning, which can improve the care of this population

  • Framework for engaging older adults in clinical decision-making. Strong interactions between patients, social support networks and providers promote seamless coordination of care, access to services and continuity of care to occur across the complex system
  • Framework for engaging older adults in healthcare research and planning. The development of a relationship between all stakeholders and system level (environment) considerations are essential to capture the breadth of the contextual influence before planning any engagement opportunity.

Why This Study was Needed

Patient and caregiver engagement is increasingly being recognized as a crucial element in health care reform. However, limited research has focused on engaging seniors – the fastest growing segment of the population and the greatest consumers of health resources. To improve the health care system, seniors and their families need to be engaged as active partners in health care research, planning and decision-making.

How This Study Addresses the Gap

  • This study was a realist review of theoretical frameworks from six peer-reviewed databases and the grey literature. The search generated 15,683 articles; 663 were pertinent to clinical health care decision-making and 546 were related to research and planning
  • Expert consultation was conducted through interviews with academics, and older adults and their caregivers to further synthesize the evidence and develop the framework. The synthesis guided the development of the frameworks for engagement of older adults, along with strategies and principles that should be implemented in various settings

Future Research

The guidelines and recommendations produced from this study need to be tested in clinical and research/planning settings.

Publications

Publications

Elliott, J., McNeil, H., Ashbourne, J., Huson, K., Boscart, V., Stolee, P. (2016). Engaging older adults in health care decision-making: A realist synthesis. The Patient: Patient-Centered Outcomes Research. E-pub. Doi: 10.1007/s40271-016-0168-x.

McNeil, H., Elliott, J., Huson, K., Ashbourne, J., Heckman, G., Walker, J., Stolee, P. (2016). Engaging Older Adults in Healthcare Research and Planning: A Realist Synthesis. Research Involvement and Engagement. 2(10). Doi: 10.1186/s40900-016-0022-2.

Stolee, P. (corresponding author), Elliott, J., McNeil, H., Boscart, V., Heckman, G., Hutchinson, R., Hedley, M., Glouberman, S., & Judd, M. (2015). Choosing Healthcare Options by Involving Canada’s Elderly: A protocol for the CHOICE realist synthesis project on engaging older persons in healthcare decision-making. BMJ Open, 5(11), 1-6. Doi: 10.1136/bmjopen-2015-008190.

Presentations

Presentations

Stolee, P. (June 2015). Patient experience and engagement across transitions of care. TVN National Forum 2015: Moving towards a strategy for the care of Canada’s frail elderly. Toronto, ON. 

Elliott, J., McNeil, H., Stolee, P., & the CHOICE Investigators. (May 2015). Engaging older adults in health care decision-making: Key findings and recommendations from the CHOICE knowledge synthesis project. Poster/oral presentation at the Canadian Association for Health Services and Policy Research (CAHSPR) Conference 2015, Montreal, QC. 

McNeil, H., Stolee, P., Elliott, J., & The CHOICE Investigators. (May 2015). Engaging older adults in health care research and policy: Guidelines from the CHOICE project. Poster presentation at the Canadian Association for Health Services and Policy Research (CAHSPR) Conference 2015, Montreal, QC. 

McNeil, H., Stolee, P., Elliott, J., the CHOICE Investigators. (October 2014). Engaging older adults in health care decision-making: Results from the CHOICE knowledge synthesis project. Poster Presentation at Canadian Association on Gerontology Conference, Niagara Falls, ON.

McNeil, H., Stolee, P., Elliott, J., the CHOICE Investigators. (November 2014,). Engaging older adults in health care research and policy: Guidelines from the CHOICE project. Poster Presentation at the International Conference on Integrated Care: 2nd World Congress on Integrated Care, Sydney, Australia.

Elliott, J., McNeil, H., Stolee, P., the CHOICE Investigators. (November 2014). Engaging older adults in health care decision-making: Key findings and recommendations from the CHOICE knowledge synthesis project. Poster/oral presentation at the International Conference on Integrated Care: 2nd World Congress on Integrated Care, Sydney, Australia.

Rationale, Objectives & Research Plan

Rationale: Engagement in health care research, planning, and decision making has been recognized as an important, and often lacking, aspect of person-centred care. However, limited research has focused on engaging seniors – the fastest growing segment of the population and the greatest consumers of health resources. To improve the health care system seniors and their families need to be engaged as active partners in health care research, planning, and decision-making.

Objectives: We aimed to draw on available theory, evidence and experience to develop guidelines for engaging older adults and their families in healthcare research, planning, and decision-making. To share results from this CHOICE (Choosing Healthcare Options by Involving Canada’s Elderly) knowledge synthesis project.

Research Plan: We conducted a realist synthesis of available knowledge on strategies for engagement of older patients and their caregivers in health care decision-making. Our synthesis encompassed theoretical frameworks and both peer-reviewed and grey literature. Search terms included: health care, decision making, public, health care decision making, engagement, and public engagement. Expert consultation included interviews with academics (n=2), two focus group interviews with seniors and families, and two workshops organized with our partner Patients Canada.