Abstract
BackgroundGrowing interest in public involvement in health research has led to organisational and policy change. Additionally, an emerging body of policy-oriented scholarship has begun to identify the organisational and network arrangements that shape public involvement activity. Such developments suggest the need to clearly conceptualise and characterise public involvement in health research in terms of governance.MethodsWe drew on an established health research system framework to analyse governance functions related to public involvement, adapting scoping review methods to identify evidence from a corpus of journal papers and policy reports. We drew on the logics of aggregation and top down configuration, using a qualitative interpretive approach to combine and link findings from different studies into framework categories.ResultsWe identified a total of 32 scholarly papers and 13 policy reports (n = 45 included papers) with relevance to governance for public involvement. Included papers were broadly consonant in identifying the need for activity to specify and support public involvement across all four governance functions of stewardship, financing, creating and sustaining resources, and research production and use. However, different visions for public involvement, and the activity required to implement it and achieve impact, were particularly evident with respect to the stewardship function, which seeks to set overall directions for research while addressing the potentially competing demands of a system’s many constituents.ConclusionsA governance perspective has considerable value for public involvement in health research systems, supporting efforts to coordinate and institutionalise the burgeoning public involvement enterprise. Furthermore, it highlights challenges for what is, ultimately, a highly political intervention, suggesting that diverse publics must be both involved within health research systems and enrolled as governors of them.
Highlights
Growing interest in public involvement in health research has led to organisational and policy change
We drew on scoping review methodology to identify a corpus of scholarly papers and policy reports with relevance to governance for public involvement within health research systems’ (HRS) [29, 30]
Financing The second major function of a HRS with relevance to governance for public involvement concerns its financing, both in securing funds to support public involvement and in accountably allocating these funds [27]
Summary
Growing interest in public involvement in health research has led to organisational and policy change. An emerging body of policy-oriented scholarship has begun to identify the organisational and network arrangements that shape public involvement activity Such developments suggest the need to clearly conceptualise and characterise public involvement in health research in terms of governance. Miller et al Health Research Policy and Systems (2018) 16:79 increasingly inform the efforts of research producers, including individual researchers as well as producer organisations such as universities, hospitals or research institutes [13,14,15,16,17,18] Such policy developments have attracted scholarly interest, and an emerging body of policy-oriented work has begun to explore organisational and jurisdictional efforts related to public involvement as well as the arrangements and institutions that direct the health research enterprise and condition the potential for the successful implementation of the public involvement agenda [2, 19]. Governments are looked to as essential actors from this perspective, but so too are authorities in the para-public or private sectors, creating opportunities for “good governance” [21] alongside challenges for democratic and formal accountability [22]
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