Strategies for involving patients and the public in scaling-up initiatives in health and social services: protocol for a scoping review and Delphi survey.

Affiliation

Collaborators: Beaumont M, Beleno R, Ben Charif A, Bierman A, Blais J, Fancott C, Geiger F, Gogovor A, Guay-Bélanger S, Kastner K, Légaré F, McLean R, Milat AJ, Paquette JS, Plourde KV, Rivest F, Straus S, Thibodeau G, Wolfenden L, Zomahoun HTV.
Author information:
(1)VITAM-Centre de recherche en santé durable, Université Laval, Pavillon Landry-Poulin, 2525, Chemin de la Canardière, Quebec City, QC, G1J 0A4, Canada.
(2)Tier 1 Canada Research Chair in Shared Decision Making and Knowledge Translation, Université Laval, Quebec City, QC, Canada.
(3)Department of Family Medicine and Emergency Medicine, Université Laval, Quebec City, QC, Canada.
(4)Health and Social Services Systems, Knowledge Translation and Implementation component of the Quebec SPOR-SUPPORT Unit, Université Laval, Quebec City, QC, Canada.
(5)Faculty of Medicine, School of Physical and Occupational Therapy, Epidemiology, Biostatistics, and Occupational Health, McGill University, Montreal, QC, Canada.
(6)LiKaShing Knowledge Institute, St. Michael's Hospital, Toronto, ON, Canada.
(7)St. Michael's Hospital, Toronto, ON, Canada.
(8)Department of Medicine, University of Toronto, Toronto, ON, Canada.
(9)Age-Well NCE, Toronto Rehabilitation Institute, Toronto, ON, Canada.
(10)Best Endings, Toronto, ON, Canada.
(11)International Development Research Centre, Ottawa, ON, Canada.
(12)Faculty of Medicine and Health Sciences, Stellenbosch University, Tygerberg, South Africa.
(13)School of Public Health, University of Sydney, Sydney, NSW, Australia.
(14)Centre for Epidemiology and Evidence, NSW Ministry of Health, Sydney, NSW, Australia.
(15)School of Medicine and Public Health, University of Newcastle, Callaghan, NSW, Australia.
(16)Hunter Medical Research Institute, New Lambton Heights, NSW, Australia.
(17)Hunter New England Population Health, Wallsend, NSW, Australia.
(18)Laboratoire ARIMED, Groupe de médecine de famille universitaire
(GMF-U) de Saint-Charles-Borromée, Saint-Charles-Borromée, QC, Canada.
(19)SHARE TO CARE Project, University Medical Center Schleswig-Holstein
(UKSH), Kiel, Germany.
(20)Department of Pediatrics, University Medical Center Schleswig-Holstein
(UKSH), Kiel, Germany.
(21)Institute for Medical Psychology and Medical Sociology, University Medical Center Schleswig-Holstein
(UKSH), Kiel, Germany.
(22)Department of Psychology, MSH Medical School Hamburg, Hamburg, Germany.
(23)VITAM-Centre de recherche en santé durable, Université Laval, Pavillon Landry-Poulin, 2525, Chemin de la Canardière, Quebec City, QC, G1J 0A4, Canada. [Email]
(24)Tier 1 Canada Research Chair in Shared Decision Making and Knowledge Translation, Université Laval, Quebec City, QC, Canada. [Email]
(25)Department of Family Medicine and Emergency Medicine, Université Laval, Quebec City, QC, Canada. [Email]
(26)Population Health and Practice-Changing Research Group, CHU de Québec Research Centre, Quebec City, QC, Canada. [Email]
(27)Diabetes Action Canada, a SPOR Network in Diabetes and its Related Complications, Université Laval, Quebec City, QC, Canada. [Email]

Abstract

BACKGROUND: The scale-up of evidence-based innovations is required to reduce waste and inequities in health and social services (HSS). However, it often tends to be a top-down process initiated by policy makers, and the values of the intended beneficiaries are forgotten. Involving multiple stakeholders including patients and the public in the scaling-up process is thus essential but highly complex. We propose to identify relevant strategies for meaningfully and equitably involving patients and the public in the science and practice of scaling up in HSS. METHODS: We will adapt our overall method from the RAND/UCLA Appropriateness Method. Following this, we will perform a two-prong study design (knowledge synthesis and Delphi study) grounded in an integrated knowledge translation approach. This approach involves extensive participation of a network of stakeholders interested in patient and public involvement (PPI) in scaling up and a multidisciplinary steering committee. We will conduct a systematic scoping review following the methodology recommended in the Joanna Briggs Institute Reviewers Manual. We will use the following eligibility criteria: (1) participants-any stakeholder involved in creating or testing a strategy for PPI; (2) intervention-any PPI strategy proposed for scaling-up initiatives; (3) comparator-no restriction; (4) outcomes: any process or outcome metrics related to PPI; and (5) setting-HSS. We will search electronic databases (e.g., Medline, Web of Science, Sociological Abstract) from inception onwards, hand search relevant websites, screen the reference lists of included records, and consult experts in the field. Two reviewers will independently select and extract eligible studies. We will summarize data quantitatively and qualitatively and report results using the PRISMA extension for Scoping Reviews (PRISMA-ScR) checklist. We will conduct an online Delphi survey to achieve consensus on the relevant strategies for PPI in scaling-up initiatives in HSS. Participants will include stakeholders from low-, middle-, and high-income countries. We anticipate that three rounds will allow an acceptable degree of agreement on research priorities. DISCUSSION: Our findings will advance understanding of how to meaningfully and equitably involve patients and the public in scaling-up initiatives for sustainable HSS. SYSTEMATIC REVIEW REGISTRATION: We registered this protocol with the Open Science Framework on August 19, 2020 ( https://osf.io/zqpx7/ ).