Article Text

Original research
Understanding patient partnership in health systems: lessons from the Canadian patient partner survey
  1. Julia Abelson1,2,
  2. Carolyn Canfield3,4,
  3. Myles Leslie5,
  4. Mary Anne Levasseur3,
  5. Paula Rowland6,7,
  6. Laura Tripp1,
  7. Meredith Vanstone2,8,
  8. Janelle Panday8,
  9. David Cameron9,
  10. Pierre-Gerlier Forest5,
  11. Daniel Sussman1,
  12. Geoff Wilson10
  1. 1Department of Health Research Methods, Evidence and Impact, McMaster University, Hamilton, Ontario, Canada
  2. 2Centre for Health Economics and Policy Analysis (CHEPA), McMaster University, Hamilton, Ontario, Canada
  3. 3Patient Advisors Network, Toronto, Ontario, Canada
  4. 4Department of Family Practice, University of British Columbia, Vancouver, British Columbia, Canada
  5. 5School of Public Policy, University of Calgary, Calgary, Alberta, Canada
  6. 6The Wilson Centre, University of Toronto/University Health Network, Toronto, Ontario, Canada
  7. 7Department of Occupational Science and Occupational Therapy, Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada
  8. 8Department of Family Medicine, Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada
  9. 9McMaster Decision Science Laboratory, McMaster University, Hamilton, Ontario, Canada
  10. 10Nova Scotia Health Authority, Halifax, Nova Scotia, Canada
  1. Correspondence to Dr. Julia Abelson; abelsonj{at}mcmaster.ca

Abstract

Objectives To examine the sociodemographic characteristics, activities, motivations, experiences, skills and challenges of patient partners working across multiple health system settings in Canada.

Design Online cross-sectional survey of self-identified patient partners.

Setting Patient partners in multiple jurisdictions and health system organisations.

Participants 603 patient partners who had drawn on their experiences with the health system as a patient, family member or informal caregiver to try to improve it in some way, through their involvement in the activities of a group, organisation or government.

Results Survey respondents predominantly identified as female (76.6%), white (84%) and university educated (70.2%) but were a heterogeneous group in the scope (activities and organisations), intensity (number of hours) and longevity (number of years) of their role. Primary motivations for becoming a patient partner were the desire to improve the health system based on either a negative (36.2%) or positive (23.3%) experience. Respondents reported feeling enthusiastic (83.6%), valued (76.9%) and needed (63.3%) always or most of the time; just under half felt they had always or often been adequately compensated in their role. Knowledge of the health system and the organisation they partner with are key skills needed. Two-thirds faced barriers in their role with over half identifying power imbalances. Less than half were able to see how their input was reflected in decisions or changes always or most of the time, and 40.3% had thought about quitting.

Conclusions This survey is the first of its kind to examine at a population level, the characteristics, experiences and dynamics of a large sample of self-identified patient partners. Patient partners in this sample are a sociodemographically homogenous group, yet heterogeneous in the scope, intensity and longevity of roles. Our findings provide key insights at a critical time, to inform the future of patient partnership in health systems.

  • Health policy
  • Quality in health care
  • HEALTH SERVICES ADMINISTRATION & MANAGEMENT

Data availability statement

Data are available on reasonable request. Deidentified, aggregated survey data may be shared on a case-by-case basis depending on the nature of the request and intended use (abelsonj@mcmaster.ca).

http://creativecommons.org/licenses/by-nc/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

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Data availability statement

Data are available on reasonable request. Deidentified, aggregated survey data may be shared on a case-by-case basis depending on the nature of the request and intended use (abelsonj@mcmaster.ca).

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    This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.

  • Supplementary Data

    This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.

Footnotes

  • Twitter @julia_abelson

  • Contributors JA conceived the idea of the survey and oversaw all aspects of its development. CC, ML, MAL, PR, LT, MV, JP, DC, P-GF, DS and GW contributed substantively to the design of the survey including item development, structure and layout. JA, LT and DC led the data analysis. CC, ML, MAL, PR, MV, JP, DC, P-GF, DS and GW reviewed interim analyses and contributed to key analytical decisions. JA and LT drafted the original manuscript. CC, ML, MAL, PR, MV, JP, DC, P-GF, DS and GW reviewed and contributed to multiple revisions of the manuscript, and have approved the final version. JA and MV are the coprincipal investigators of the Canadian Patient Partner Study. JA is the guarantor, accepts full responsibility for the work, had access to all the data and was responsible for the decision to publish. JA attested that all listed authors met authorship criteria and that no others meeting the criteria had been omitted.

  • Funding The study was funded by the Canadian Institutes of Health Research (CIHR), Project Number 165883.

  • Competing interests None declared.

  • Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.

  • 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.

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