Patient stakeholder engagement in research: A narrative review to describe foundational principles and best practice activities.
patient engagement
patient involvement
patient participation
research
review
systematic review
Journal
Health expectations : an international journal of public participation in health care and health policy
ISSN: 1369-7625
Titre abrégé: Health Expect
Pays: England
ID NLM: 9815926
Informations de publication
Date de publication:
06 2019
06 2019
Historique:
received:
09
08
2018
revised:
16
01
2019
accepted:
17
01
2019
pubmed:
15
2
2019
medline:
9
9
2020
entrez:
15
2
2019
Statut:
ppublish
Résumé
Health research is evolving to include patient stakeholders (patients, families and caregivers) as active members of research teams. Frameworks describing the conceptual foundations underlying this engagement and strategies detailing best practice activities to facilitate engagement have been published to guide these efforts. The aims of this narrative review are to identify, quantify and summarize (a) the conceptual foundational principles of patient stakeholder engagement in research and (b) best practice activities to support these efforts. SEARCH STRATEGY, INCLUSION CRITERIA, DATA EXTRACTION AND SYNTHESIS: We accessed a publicly available repository of systematically identified literature related to patient engagement in research. Two reviewers independently screened articles to identify relevant articles and abstracted data. We identified 990 potentially relevant articles of which 935 (94.4%) were excluded and 55 (5.6%) relevant. The most commonly reported foundational principles were "respect" (n = 25, 45%) and "equitable power between all team members" (n = 21, 38%). Creating "trust between patient stakeholders and researchers" was described in 17 (31%) articles. Twenty-seven (49%) articles emphasized the importance of providing training and education for both patient stakeholder and researchers. Providing financial compensation for patient stakeholders' time and expertise was noted in 19 (35%) articles. Twenty articles (36%) emphasized regular, bidirectional dialogue between patient partners and researchers as important for successful engagement. Engaging patient stakeholders in research as partners presents an opportunity to design, implement and disseminate patient-centred research. This review creates an overarching foundational framework for authentic and sustainable partnerships between patient stakeholders and researchers.
Sections du résumé
BACKGROUND
Health research is evolving to include patient stakeholders (patients, families and caregivers) as active members of research teams. Frameworks describing the conceptual foundations underlying this engagement and strategies detailing best practice activities to facilitate engagement have been published to guide these efforts.
OBJECTIVE
The aims of this narrative review are to identify, quantify and summarize (a) the conceptual foundational principles of patient stakeholder engagement in research and (b) best practice activities to support these efforts. SEARCH STRATEGY, INCLUSION CRITERIA, DATA EXTRACTION AND SYNTHESIS: We accessed a publicly available repository of systematically identified literature related to patient engagement in research. Two reviewers independently screened articles to identify relevant articles and abstracted data.
MAIN RESULTS
We identified 990 potentially relevant articles of which 935 (94.4%) were excluded and 55 (5.6%) relevant. The most commonly reported foundational principles were "respect" (n = 25, 45%) and "equitable power between all team members" (n = 21, 38%). Creating "trust between patient stakeholders and researchers" was described in 17 (31%) articles. Twenty-seven (49%) articles emphasized the importance of providing training and education for both patient stakeholder and researchers. Providing financial compensation for patient stakeholders' time and expertise was noted in 19 (35%) articles. Twenty articles (36%) emphasized regular, bidirectional dialogue between patient partners and researchers as important for successful engagement.
DISCUSSION AND CONCLUSIONS
Engaging patient stakeholders in research as partners presents an opportunity to design, implement and disseminate patient-centred research. This review creates an overarching foundational framework for authentic and sustainable partnerships between patient stakeholders and researchers.
Identifiants
pubmed: 30761699
doi: 10.1111/hex.12873
pmc: PMC6543160
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Review
Langues
eng
Sous-ensembles de citation
IM
Pagination
307-316Subventions
Organisme : Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award
ID : Harrison #3455
Pays : International
Informations de copyright
© 2019 The Authors Health Expectations published by John Wiley & Sons Ltd.
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