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

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/).

A Metagovernance Model of Innovation Networks in the Health and Social Services Using a Neo-Schumpeterian Framework

“…This dimension stems from the “system innovation” concept [ 50 , 51 ] without leaving out the specificities of the broader and deeper scope of the collaborative strategy. We can emphasize some of them, paralleling other collaborative innovation research [ 1 ]. On one hand, the actors in these new ecosystems are the actual partners of PSINs—at least, some representatives of them are.…”

“…These networks seem to be particularly relevant in the health and social services (HSS) sector [ 1 , 13 ]. This sector combines the characteristics of two important domains of public intervention to define a broader-scope type of services.…”

“…This sector combines the characteristics of two important domains of public intervention to define a broader-scope type of services. The HSS intend to improve the health of communities and populations [ 1 ] and to reduce waste and inequities. As a consequence, their recent developments spawn from the multiplicity of agents participating in their scaling-up, i.e., the multiplication of the impact of innovations to benefit more people, reduce more waste, and foster more sustainable policies in the longer run.…”

“…The collaborative approach, associated with the New Public Governance (NPG) [ 19 ], or Public Service Logic [ 19 ], explicitly acknowledges the differentiation between technical and nontechnical characteristics of HSS innovation. This demarcation is realized throughout the preparatory, execution, and translational phases of the scaling-up of innovations [ 1 ]. In every phase, the involvement of the patients and rest of stakeholders should be meaningful and equitable, carrying an equal weight as that of the medical and research partners.…”

“…In addition, networks and consortia have successfully addressed lasting and long-known problems of inequality, exclusion, social and natural ecosystems breakdowns, waste, and resource depletion. These multi-agent arrangements have effectively integrated patients, their families, and other multiple stakeholders to design and implement innovations [ 1 ].…”