Article Text

Original research
Themes for evaluating the quality of initiatives to engage patients and family caregivers in decision-making in healthcare systems: a scoping review
  1. Clayon B Hamilton1,2,3,4,5,
  2. Maryam Dehnadi3,4,
  3. M Elizabeth Snow3,6,
  4. Nancy Clark7,
  5. Michelle Lui4,
  6. Janet McLean8,
  7. Hussein Mamdani4,
  8. Allison L Kooijman9,10,
  9. Vikram Bubber9,
  10. Tammy Hoefer11,
  11. Patients as Partners Team2,
  12. Linda C Li4,5
  1. 1Evaluation and Research Services, Fraser Health Authority, Surrey, British Columbia, Canada
  2. 2Primary Care Division, Ministry of Health, Victoria, British Columbia, Canada
  3. 3Faculty of Health Sciences, Simon Fraser University, Burnaby, British Columbia, Canada
  4. 4Arthritis Research Canada, Vancouver, British Columbia, Canada
  5. 5Department of Physical Therapy, University of British Columbia, Vancouver, British Columbia, Canada
  6. 6Centre for Health Evaluation and Outcomes Sciences, Vancouver, British Columbia, Canada
  7. 7Faculty of Human and Social Development, University of Victoria, Victoria, British Columbia, Canada
  8. 8Family Caregivers of British Columbia, Victoria, British Columbia, Canada
  9. 9Patient Voices Network, BC Patient Safety and Quality Council, Vancouver, British Columbia, Canada
  10. 10School of Interdisciplinary Studies, University of British Columbia, Vancouver, British Columbia, Canada
  11. 11BC Patient Safety and Quality Council, Vancouver, British Columbia, Canada
  1. Correspondence to Dr Clayon B Hamilton; clayon.hamilton{at}


Objective To identify the key themes for evaluating the quality of initiatives to engage patients and family caregivers in decision-making across the organisation and system domains of healthcare systems.

Methods We conducted a scoping review. Seven databases of journal articles were searched from their inception to June 2019. Eligible articles were literature reviews published in English and provided useful information for determining aspects of engaging patients and family caregivers in decision-making to evaluate. We extracted text under three predetermined categories: structure, process and outcomes that were adapted from the Donabedian conceptual framework. These excerpts were then independently open-coded among four researchers. The subsequent themes and their corresponding excerpts were summarised to provide a rich description of each theme.

Results Of 7747 unique articles identified, 366 were potentially relevant, from which we selected the 42 literature reviews. 18 unique themes were identified across the three predetermined categories. There were six structure themes: engagement plan, level of engagement, time and timing of engagement, format and composition, commitment to support and environment. There were four process themes: objectives, engagement approach, communication and engagement activities. There were eight outcome themes: decision-making process, stakeholder relationship, capacity development, stakeholder experience, shape policy/service/programme, health status, healthcare quality, and cost-effectiveness.

Conclusions The 18 themes and their descriptions provide a foundation for identifying constructs and selecting measures to evaluate the quality of initiatives for engaging patients and family caregivers in healthcare system decision-making within the organisation and system domains. The themes can be used to investigate the mechanisms through which relevant initiatives are effective and investigate their effectiveness.

  • health services administration & management
  • health policy
  • quality in health care
  • rationing
  • public health

Data availability statement

Data are available upon reasonable request.

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  • Twitter @Dr_Clayon, @LLi_1

  • Collaborators Patients as Partners Team: Kristen Grant, Shannon Gibson, Shannon Holms, Sherry Bar and Sirisha Asuri.

  • Contributors CH obtained funding, conceptualised the research and drafted this review. Several authors (CH, MD, MES, NC, ML, JM, HM, TH, PasP and LCL) made intellectual contribution to the development of the protocol and the acquisition of project funding. Authors (CH, MD, MES, NC, ML, JM, HM, AK, VB, TH, PasP and LCL) wrote the manuscript by reviewing and editing early drafts by CH, and by providing input through team discussions, one-on-one meetings and email.

  • Funding This work is supported by SPOR Evidence Alliance through funding from the Canadian Institutes of Health Research (CIHR) under the Strategy for Patient Oriented-Research (SPOR) initiative grant number GSR-154442. CH was supported by a CIHR-MSFHR Health System Impact Fellowship from the BC Ministry of Health, Canadian Institutes of Health Research, and Michael Smith Foundation for Health Research (MSFHR). CH was also supported by a MSFHR Research Trainee award. LCL holds the Harold Robinson/Arthritis Society Chair in Arthritic Diseases, and is supported by the Canada Research Chair Programme. She was also supported by a MSFHR Scholar Award.

  • Competing interests JM is employed by Family Caregivers of British Columbia, a paid partner of the Patients as Partners Initiative and a non-profit organisation that provides support and advocates for family caregivers within British Columbia, Canada. The Patient as Partners Team members are employed by the British Columbia Ministry of Health that provide partial support for this project.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.