Strategies for involving patients and the public in scaling-up initiatives in health and social services: protocol for a scoping review and Delphi survey
Authors: Ben Charif Ali , Plourde Karine V. , Guay-Bélanger Sabrina , Zomahoun Hervé Tchala Vignon , Gogovor Amédé , Straus Sharon , Beleno Ron , Kastner Kathy , McLean Robert K. D. , Milat Andrew J. , Wolfenden Luke , Paquette Jean-Sébastien , Geiger Friedemann , Légaré France ,   The RePOS Network, Beaumont Martin , Beleno Ron , Ben Charif Ali , Bierman Arlene , Blais Johanne , Fancott Carol , Geiger Friedemann , Gogovor Amédé , Guay-Bélanger Sabrina , Kastner Kathy , Légaré France , McLean Robert , Milat Andrew J. , Paquette Jean-Sébastien , Plourde Karine V. , Rivest Francois , Straus Sharon , Thibodeau Guy , Wolfenden Luke , Zomahoun Hervé Tchala Vignon 
Published: February 2021

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/).