Patient engagement in a national research network: barriers, facilitators, and impacts

被引：10

作者：

Gonzalez M. ^{[1
,2
]}

Ogourtsova T. ^{[1
,3
]}

Zerbo A. ^{[4
]}

Lalonde C. ^{[4
]}

Spurway A. ^{[4
]}

Gavin F. ^{[4
]}

Shikako K. ^{[1
,2
,5
]}

Weiss J.A. ^{[6
]}

Majnemer A. ^{[1
,2
,3
]}

机构：

[1] Faculty of Medicine and Health Sciences, School of Physical and Occupational Therapy, McGill University, 3654 Promenade Sir William Osler, Montréal

[2] Research Institute of the McGill University Health Centre, 1001 Decarie Blvd, Montréal

[3] The Research Center of the Jewish Rehabilitation Hospital, Centre Intégré de Santé Et de Services Sociaux de Laval, Site of Centre for Interdisciplinary Research in Rehabilitation of Greater Montreal, 3205 PI. Alton-Goldbloom, Laval, H7V 1R2, QC

[4] The CHILD-BRIGHT Patient-Oriented Research Network, 5252 Boul de Maisonneuve O., Montréal

[5] Centre for Interdisciplinary Research in Rehabilitation of Greater Montreal (Mackay Site), 7000 Sherbrooke St. West, Montréal

[6] Department of Psychology, Faculty of Health, York University, 4700 Keele St., Toronto, M3J 1P3, ON

来源：

Research Involvement and Engagement | / 9卷 / 1期

关键词：

Barriers; Facilitators; Impacts; Large teams; Patient engagement; Patient-partners; Research networks; Researchers;

D O I：

10.1186/s40900-023-00418-5

中图分类号：

学科分类号：

摘要：

Background: Little is known about patient engagement in the context of large teams or networks. Quantitative data from a larger sample of CHILD-BRIGHT Network members suggest that patient engagement was beneficial and meaningful. To extend our understanding of the barriers, facilitators, and impacts identified by patient-partners and researchers, we conducted this qualitative study. Methods: Participants completed semi-structured interviews and were recruited from the CHILD-BRIGHT Research Network. A patient-oriented research (POR) approach informed by the SPOR Framework guided the study. The Guidance for Reporting Involvement of Patients and the Public (GRIPP2-SF) was used to report on involvement of patient-partners. The data were analyzed using a qualitative, content analysis approach. Results: Twenty-five CHILD-BRIGHT Network members (48% patient-partners, 52% researchers) were interviewed on their engagement experiences in the Network’s research projects and in network-wide activities. At the research project level, patient-partners and researchers reported similar barriers and facilitators to engagement. Barriers included communication challenges, factors specific to patient-partners, difficulty maintaining engagement over time, and difficulty achieving genuine collaboration. Facilitators included communication (e.g., open communication), factors specific to patient-partners (e.g., motivation), and factors such as respect and trust. At the Network level, patient-partners and researchers indicated that time constraints and asking too much of patient-partners were barriers to engagement. Both patient-partners and researchers indicated that communication (e.g., regular contacts) facilitated their engagement in the Network. Patient-partners also reported that researchers’ characteristics (e.g., openness to feedback) and having a role within the Network facilitated their engagement. Researchers related that providing a variety of activities and establishing meaningful collaborations served as facilitators. In terms of impacts, study participants indicated that POR allowed for: (1) projects to be better aligned with patient-partners’ priorities, (2) collaboration among researchers, patient-partners and families, (3) knowledge translation informed by patient-partner input, and (4) learning opportunities. Conclusion: Our findings provide evidence of the positive impacts of patient engagement and highlight factors that are important to consider in supporting engagement in large research teams or networks. Based on these findings and in collaboration with patient-partners, we have identified strategies for enhancing authentic engagement of patient-partners in these contexts. © 2023, The Author(s).

引用

共 39 条

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