"Still learning and evolving in our approaches": patient and stakeholder engagement among Canadian community-based primary health care researchers

Claire Kendall^{1

2

3

4

5}, Michael Fitzgerald¹, Rachel Seoyeon Kang⁶, Sabrina T Wong^{7

8}, Alan Katz^{9

10

11}, Martin Fortin^{12

13}, Emilie Dionne¹⁴, Kerry Kuluski^{15

16}, Mary Ann O'Brien¹⁷, Jenny Ploeg^{18

19

20

21}, Lois Crowe¹, Clare Liddy^{1

22}

Affiliations

¹ 1C.T. Lamont Primary Health Care Research Centre, Bruyère Research Institute, Ottawa, ON Canada.
² 2Department of Family Medicine, University of Ottawa, Ottawa, ON Canada.
³ 3Institute for Clinical Evaluative Sciences (IC/ES), Toronto, ON Canada.
⁴ 4Li Ka Shing Knowledge Institute, St. Michael's Hospital, Toronto, ON Canada.
⁵ 5Ottawa Hospital Research Institute, Ottawa, ON Canada.
⁶ 6School of Medicine, University of Ottawa, Ottawa, ON Canada.
⁷ 7School of Nursing, University of British Columbia, Vancouver, BC Canada.
⁸ 8Centre for Health Services and Policy Research, University of British Columbia, Vancouver, BC Canada.
⁹ 9Manitoba Centre for Health Policy, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, MB Canada.
¹⁰ 10Department of Family Medicine, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, MB Canada.
¹¹ 11Department of Community Health Sciences, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, MB Canada.
¹² 12Department of Family Medicine and Emergency Medicine, Université de Sherbrooke, Chicoutimi, QC Canada.
¹³ Centre Intégré Universitaire de Santé et de Services Sociaux du Saguenay-Lac St-Jean, Chicoutimi, QC Canada.
¹⁴ 14St. Mary's Research Centre & Department of Family Medicine, McGill University, Montreal, QC Canada.
¹⁵ 15Bridgepoint Collaboratory of the Lunenfeld-Tanenbaum Research Institute, Sinai Health System, Toronto, ON Canada.
¹⁶ 16Institute of Health Policy, Management and Evaluation, Dalla Lana School of Public Health, University of Toronto, Toronto, ON Canada.
¹⁷ 17Department of Family and Community Medicine, University of Toronto, Toronto, ON Canada.
¹⁸ 18School of Nursing, Faculty of Health Sciences, McMaster University, Hamilton, ON Canada.
¹⁹ 19Department of Health, Aging and Society, Faculty of Social Sciences, McMaster University, Hamilton, ON Canada.
²⁰ 20McMaster Institute for Research on Aging, McMaster University, Hamilton, ON Canada.
²¹ 21Aging, Community and Health Research Unit, McMaster University, Hamilton, ON Canada.
²² 22Department of Family Medicine, Faculty of Medicine, University of Ottawa, Ottawa, ON Canada.

PMID: 30524753
PMCID: PMC6276251
DOI: 10.1186/s40900-018-0132-0

"Still learning and evolving in our approaches": patient and stakeholder engagement among Canadian community-based primary health care researchers

Claire Kendall et al. Res Involv Engagem. 2018.

. 2018 Dec 3:4:47.

doi: 10.1186/s40900-018-0132-0. eCollection 2018.

Authors

Affiliations

¹ 1C.T. Lamont Primary Health Care Research Centre, Bruyère Research Institute, Ottawa, ON Canada.
² 2Department of Family Medicine, University of Ottawa, Ottawa, ON Canada.
³ 3Institute for Clinical Evaluative Sciences (IC/ES), Toronto, ON Canada.
⁴ 4Li Ka Shing Knowledge Institute, St. Michael's Hospital, Toronto, ON Canada.
⁵ 5Ottawa Hospital Research Institute, Ottawa, ON Canada.
⁶ 6School of Medicine, University of Ottawa, Ottawa, ON Canada.
⁷ 7School of Nursing, University of British Columbia, Vancouver, BC Canada.
⁸ 8Centre for Health Services and Policy Research, University of British Columbia, Vancouver, BC Canada.
⁹ 9Manitoba Centre for Health Policy, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, MB Canada.
¹⁰ 10Department of Family Medicine, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, MB Canada.
¹¹ 11Department of Community Health Sciences, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, MB Canada.
¹² 12Department of Family Medicine and Emergency Medicine, Université de Sherbrooke, Chicoutimi, QC Canada.
¹³ Centre Intégré Universitaire de Santé et de Services Sociaux du Saguenay-Lac St-Jean, Chicoutimi, QC Canada.
¹⁴ 14St. Mary's Research Centre & Department of Family Medicine, McGill University, Montreal, QC Canada.
¹⁵ 15Bridgepoint Collaboratory of the Lunenfeld-Tanenbaum Research Institute, Sinai Health System, Toronto, ON Canada.
¹⁶ 16Institute of Health Policy, Management and Evaluation, Dalla Lana School of Public Health, University of Toronto, Toronto, ON Canada.
¹⁷ 17Department of Family and Community Medicine, University of Toronto, Toronto, ON Canada.
¹⁸ 18School of Nursing, Faculty of Health Sciences, McMaster University, Hamilton, ON Canada.
¹⁹ 19Department of Health, Aging and Society, Faculty of Social Sciences, McMaster University, Hamilton, ON Canada.
²⁰ 20McMaster Institute for Research on Aging, McMaster University, Hamilton, ON Canada.
²¹ 21Aging, Community and Health Research Unit, McMaster University, Hamilton, ON Canada.
²² 22Department of Family Medicine, Faculty of Medicine, University of Ottawa, Ottawa, ON Canada.

PMID: 30524753
PMCID: PMC6276251
DOI: 10.1186/s40900-018-0132-0

Abstract

Plain english summary: Increasingly, health researchers are conducting their research in partnership with non-researchers such as patients and caregivers, advocacy groups, clinicians, and policymakers. The idea behind this partnership is to make research more relevant and appropriate. However, so far there is not much evidence about how this partnership or engagement actually affects research. We conducted an online survey of 12 teams in Canada that have engaged patients and other stakeholders in community based health research, partly as a requirement to obtain funding. We found that in many cases, the teams have engaged a wide variety and large number of stakeholders, and have involved them in many different stages of their research. Teams reported that their overall experience of this approach to research has been positive, but some challenges have been encountered along the way. Some teams found that it was difficult to communicate appropriately with all the stakeholders, and to keep them informed when research was going slowly. Other teams had trouble finding government representatives to work with. Several teams noted that engagement is time-consuming, and requires a lot of effort. Nevertheless, all teams reported that they had learned from the experience, and found it valuable. As a result, Canadian health care researchers are better positioned to engage with patients and other stakeholders in the future.

Abstract: Background Patient and other stakeholder engagement in research is increasingly important, but there is limited evidence of its impact. In 2013, the Canadian Institutes of Health Research launched a five-year Community Based Primary Health Care (CBPHC) initiative that funded 12 teams for innovative approaches to primary health care involving engagement with patients, communities, decision-makers, and clinicians across jurisdictions in Canada. The present study examines the extent of engagement by these teams, and the factors that affected it, either as challenges or opportunities. Methods We conducted a cross-sectional web-based survey across the 12 CBPHC Innovation Teams, in which we were also participants. We used a data collection tool developed by the Patient Centered Outcomes Research Institute that included both closed and open-ended questions. Results The quantitative data showed that the CBPHC Innovation teams have engaged with diverse stakeholders at different levels and in different stages of research. Almost all teams surveyed engaged with policymakers, most with clinicians and health system representatives, and more than half with patients, mostly at the level of consultation or collaboration. There were very few instances of stakeholder-led research reported. There was a near universal recognition of the importance of communications processes/tools in facilitating engagement, whereas time was the most commonly identified challenge. In almost all cases, challenges encountered were partially if not fully resolved.The qualitative findings showed that each team's engagement was contextualized by factors such as the jurisdictions and geographic scope of the project, the number and type of stakeholders engaged and their level of involvement. These intersected with the researchers' motivations for engagement, to give rise to diverse experiences, but ones that the CBPHC teams assessed positively as an approach to research. Conclusions Over the past five years, primary health care researchers in Canada have been actively engaging with patients and other stakeholders. The wide range, extent and nature of that engagement shows that these researchers have anticipated developments in this approach to research and are thus in a position to support and strengthen future efforts to understand the impact of this engagement on health care outcomes.

Keywords: Canada; Community based; Patient engagement; Primary care; Stakeholder engagement.

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Conflict of interest statement

This study was approved by the Ottawa Health Sciences Network Research Ethics Board (protocol #20170516-01H) and the Bruyère Continuing Care Research Ethics Board (protocol #M16–17-049). Survey respondents were emailed a Participant Informed Consent Form along with a link to the online survey, which informed them that completion of the electronic questionnaire implied that they had consented to participate in the research study.Not applicable.The authors declare that they have no competing interests.Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Figures

**Fig. 1**
Stakeholders engaged by CBPHC teams (n = 10)

**Fig. 2**
Nature of stakeholder involvement (n = 10)

**Fig. 3**
Stakeholder engagement by stage of research (n = 10)

**Fig. 4**
Frequency of stakeholder engagement, by number of teams

**Fig. 5**
Evaluation of facilitators to engagement (n = 10)

**Fig. 6**
Challenges to engagement (n = 10)

See this image and copyright information in PMC

References

1. Sieck CJ, Hefner JL, McAlearney AS. Finding the Patient Voice in Research Activities: Perspectives of Patient Advisors and Researchers. J Particip Med. 2017;9:2 Available from: https://participatorymedicine.org/journal/evidence/research/2017/04/01/f....
1. Wilson P, Mathie E, Keenan J, et al. Research with patient and public involvement: a Realist evaluation – the RAPPORT study. Heal Serv Deliv Res. 2015;3(38):1–176. doi: 10.3310/hsdr03380. - DOI - PubMed
1. Deverka Patricia A, Lavallee Danielle C, Desai Priyanka J, Esmail Laura C, Ramsey Scott D, Veenstra David L, Tunis Sean R. Stakeholder participation in comparative effectiveness research: defining a framework for effective engagement. Journal of Comparative Effectiveness Research. 2012;1(2):181–194. doi: 10.2217/cer.12.7. - DOI - PMC - PubMed
1. Forsythe LP, Ellis LE, Edmundson L, et al. Patient and stakeholder engagement in the PCORI pilot projects: description and lessons learned. J Gen Intern Med. 2016;31(1):13–21. doi: 10.1007/s11606-015-3450-z. - DOI - PMC - PubMed
1. CIHR. Strategy for Patient-Oriented Research - Patient Engagement Framework - CIHR. 2014 [cited 2018 Apr 19]. Available from: http://www.cihr-irsc.gc.ca/e/48413.html.

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"Still learning and evolving in our approaches": patient and stakeholder engagement among Canadian community-based primary health care researchers

Affiliations

"Still learning and evolving in our approaches": patient and stakeholder engagement among Canadian community-based primary health care researchers

Authors

Affiliations

Abstract

Conflict of interest statement

Figures

References

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