Background
Public involvement in health research is increasingly seen as essential to the legitimacy, relevance and quality of the research enterprise, enabling research to better account for the needs of service users and caregivers, to respond to the demands of the lay communities affected by research practices and results, and to respect the imperatives of democratic accountability in service of the public interest [
1‐
4]. Accordingly, there has been a marked growth of public involvement activity, with increased reliance on representatives of diverse publics as advisors to, or investigators within, individual research projects [
3‐
6], and growing interest in involving public members in advising on and setting priorities for research funding [
7]. This has been accompanied by an explosive growth of scholarship reporting on the rationales, methods and impacts of public involvement activity [
8‐
12].
While much of this effort has been motivated by individual researchers and members of the public, it has also been conditioned by policy effort. Public sector authorities in many countries, including funding agencies and oversight bodies, are increasingly seeking to encourage, coordinate or evaluate such initiatives [
13,
14]. Organisations with the mandate to facilitate public engagement have been established and public involvement policies increasingly inform the efforts of research producers, including individual researchers as well as producer organisations such as universities, hospitals or research institutes [
13‐
18]. Such policy developments have also 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].
Policy efforts to direct public involvement in health research, alongside an emerging body of policy-oriented scholarship, suggest the need to clearly conceptualise and characterise public involvement in health research in terms of governance; that is, the way rules, norms and actions are structured, sustained and regulated to condition the operation and impact of public involvement activity. The term ‘governance’ differs from ‘government’ in highlighting the distributed nature of authority and the many ways that individuals and groups “
organize themselves to achieve agreed goals” [
20]. 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].
Governance efforts in the health sector are increasingly informed by ‘systems thinking’. For example, WHO has issued guidance on Systems Thinking for Health System Strengthening [
23] as well as the WHO framework for conceptualising ‘health research systems’ (HRS) to ensure “
knowledge for better health”, which has particular salience for research policy [
24]. Emerging from the international Commission on Health Research for Development, the HRS literature aims to support countries, and the global community, to build and sustain systems of research “
involving people, institutions and processes” that serve health systems and support population health and health equity [
25]. The WHO World Health Report of 2013 reinforced the value of the ‘systems’ perspective on health research, noting that, “
To make the best use of limited resources, systems are needed to develop national research agendas, to raise funds, to strengthen research capacity, and to make appropriate and effective use of research findings” [
26].
The HRS framework is highly relevant to governance for public involvement. The framework was designed in recognition of the multiplicity of arrangements, expectations, obligations and incentives in research contexts that are often “
fragmented, competitive, [and]
highly specialized” [
27], which is salient to public involvement, given the challenges it may pose to dominant interests and usual practice [
2]. In a related vein, the framework is attentive to the diversity of stakeholders within a HRS, and the navigation of stakeholders’ multiple, and not always compatible, interests [
28]. Further, the HRS framework expresses an openness to public involvement, including where communities lead their own research, as with emancipatory research designs [
25,
28]. Finally, the HRS framework is clear regarding the imperative to attend to health research beyond healthcare in order to address the social determinants of health and the demands of health equity [
25,
27].
Thus, to inform efforts to foster public involvement across the provincial health research enterprise in Ontario, Canada, we sought to explore the relevance of the HRS framework to governance for public involvement. We drew specifically on the conceptual framework developed by Pang et al. [
27] to consider the principal functions and associated operational components of a HRS. The framework provided the basic tools for conceptualising governance and for operationalising our review of relevant evidence.
Discussion
Increased involvement of publics in health research has been accompanied by increased effort by governments and research organisations to foster, direct and evaluate the public involvement enterprise. This raises critical questions about how and with what effect public involvement has been embedded within organisations and jurisdictions – questions that policy-oriented scholars have begun to pose.
We approached these policy questions from the perspective of governance – asking how the rules, norms and actions that structure and sustain public involvement in health research are coordinated and held accountable within jurisdictions. Central to our effort was an established framework designed to support countries to strengthen their HRS [
27]. This framework identified four core ‘functions’ of a HRS, and nine embedded ‘operational components’, which served as the data collection architecture for our search, selection and analysis of scholarly papers and policy reports. Additionally, it provided a centrally important concept – that of the HRS itself – to define the space within which governance effort is embedded.
Though newer and less well known, the concept of the HRS is as important as the complementary concept of the ‘health system’. Both terms call attention to the interconnected sets of organisational and individual actors and the web of rules, expectations and structures that produce health research or health services and population health outcomes, namely research, services or outcomes that are more or less robust, relevant and responsive. Where system theories that emphasise complexity and adaptation are drawn on, these concepts also highlight the dynamic and emergent nature of many system properties and the potential for both intended and unintended effects [
23,
70‐
72], and suggest the value of longitudinal research that queries not only the achievement of the desired visions and intended outcomes of public involvement initiatives, but also the unintended effects of these initiatives on the health and healthcare of actors and the subsystems in which they are embedded.
A governance perspective has considerable value for public involvement in HRS, supporting efforts to coordinate and institutionalise the burgeoning public involvement enterprise. The perspective points, first, to the range of ways in which public involvement has to be enacted by organisations and within jurisdictions to support and give full effect to the efforts of countless individuals. This involves stewardship to articulate a compelling vision for public involvement, to clarify the ways in which publics will set research priorities and ethical standards, and to foster clarity and consistency in the monitoring and evaluation of public involvement. This also involves financing to ensure the adequacy of funds to support public involvement and to address issues in funding policy, including the structure of funding flows and the potential for conflicted expectations by funding sources. This further involves capacity-building, in both human and organisational terms, to empower individual researchers and publics to partner and build commitment to, and enable, public involvement within research organisations and across research systems. Finally, this involves attention to the cycle of research production, synthesis and use – in recognition of the public commitment to research relevance and impact [
73], and the role of public involvement in ensuring such outcomes.
The evidence collected and organised here might be used by public involvement leaders and research system stewards to catalyse reflection and action. It is relevant also to public involvement researchers to encourage existing efforts to forge system-wide approaches on critical issues such as evaluation [
74,
75], and to identify the need for more policy-oriented work to compare, assess and theorise about the operation and effects of varied organisational and jurisdictional efforts across all HRS functions.
Yet, a governance perspective does not simply identify domains of activity and opportunities for research. It also highlights challenges for what is, ultimately, a highly political intervention. As many scholars have noted, the aim of public involvement is contested – whether to enable to ‘do better’ what is already done, or to challenge existing assumptions and arrangements, including about the nature and epistemic authority of science [
37,
39]. Contestation over the ends of public involvement was clearly evident in our review, particularly with respect to the stewardship function. Importantly, visions for public involvement differ with respect to both ‘who’ to involve and ‘how’. Further, differences extend beyond goal-setting to encompass the question of implementation and the ultimate impact of public involvement in health research.
The differences in vision that our review highlighted have important implications for HRS and the health systems they seek to serve. In particular, the scholarly literature is largely split between discussions of communities on the one hand, and patients on the other, while policy reports are primarily concerned with patients. Relatedly, scholarly literature on patient involvement emphasises high levels of involvement and scholarship on community involvement emphasises a specifically participatory and action-oriented approach, while policy reports are typically agnostic, allowing the notion that involvement can extend from research partnership through to research participation. Terminological differences are relevant here; in some contexts, the term ‘involvement’ implies more than ‘engagement’, while in others the reverse is the case [
4,
76,
77]. Additionally, the term ‘public’ is not necessarily recognised or welcomed by the individuals to be involved, who may instead identify as patients, clients, service users, family members, community members or activists [
78].
Nevertheless, the differences we identified extend beyond terminology to the politics of public involvement itself. Public involvement that aims towards partnership and action is potentially transformative, whereas public involvement that aims at public participation is not. Further, which ‘publics’ are to be involved has implications for what expertise will be mobilised and thus what research will be prioritised and pursued. If patients are only asked to represent themselves as individuals, and not as and with diverse communities nor as and with lay publics, then the aims of HRS to support health equity and to enable health beyond the delivery of care, including through public health efforts and ‘health in all’ policies and practice, will be abridged.
In addition to contestation over visions, our review identified concerns about the particular and partial implementation of the public involvement agenda and its limited impact. Visions for public involvement may be implemented to advance the self-interest of the research organisation rather than foster public empowerment [
19], and even the impact of transformative visions may be conditioned by resistant organisational arrangements and network processes [
2]. Furthermore, public involvement has seen partial uptake across funding organisations and its impact on redirecting research priorities remains limited [
41,
60].
Issues of implementation and impact become highly visible from a health research ‘systems’ perspective but raise profound challenges for governance and accountability. Both in theory and in practice, the governance of research systems is a distributed function that mobilises many authoritative actors. Indeed, as Caron-Flinterman et al. [
2] highlighted in an early example of policy scholarship on public involvement, multiple ‘intermediary organisations’, such as research funding agencies, research producer organisations (i.e. universities, hospitals) and public involvement support organisations (e.g. INVOLVE), are positioned between science and society and structure opportunities for public involvement effort and impact. As more recent research on regulation and science policy makes clear, such critical ‘intermediaries’ are not simply passive channels for transferring knowledge and objects between science, policy and economy [
79], but rather “
they mobilize, reframe and structure expertise and policy imperatives” [
80].
Governance challenges within networked systems are not unique to public involvement, though they assume a specific form. Given the important role of powerful intermediary organisations in HRS, questions arise about how accountability expectations for public involvement are to be established, how they are to be exercised (specifically what policy instruments or tools can be used) and how and with what transparency and traceability they can be enforced. Scholars who have addressed the challenges of governance and accountability for health systems highlight the need to emphasise the distinctive legitimacy of governments as authoritative actors and the importance of financial instruments in driving coordinated action and outcomes [
22]. These remedies may have relevance to the governance of HRS in general and to public involvement for such systems in particular.
The political nature of the public involvement agenda and the governance challenges that arise for HRS highlight an additional dimension of public involvement – one that we did not anticipate. The initial aim of our review was to explore how to govern for public involvement ‘within’ a HRS, which we understood as ensuring that support for public involvement is embedded ‘system wide’ and that ‘systemic effort’ is made to ensure its effectiveness. Yet, our review also highlighted a slightly different but equally important governance question – that is, what is the ‘role’ of public involvement in ‘governing’ HRS. Here, the question is less about how to embed public involvement through policy, process or infrastructure, and more about the importance of public involvement for navigating tensions within, and legitimising the efforts of, a HRS. Contests over vision and issues of accountability in the implementation and impact of public involvement cannot be resolved by researchers and the traditional governors of the research enterprise. Judgments of this sort, as Milewa et al. [
39] have argued in a related context, “
can only rest upon discursive processes within the social realm”.
The limitations of this review are several. Of note, time and resource constraints significantly limited our evidence review. We systematically searched only one database and supplemented our collection through backward and forward citation searches of included papers, and the collection of relevant papers from the investigators’ files. The limitations of our restricted search were likely compounded by the use of MEDLINE, which does not reference all relevant social science literature, the weakness of MeSH terms for identifying public involvement scholarship, and the importance of grey literature for reports on public involvement. Our targeted environmental scan aimed to address some of the grey literature limitations, but it too was limited by the restricted number of jurisdictions and organisations targeted and our focus on specific types of policy reports.
While searches across additional databases would be a partial remedy, we would suggest that a greater limitation may arise from our focus on policy-relevant scholarship, specifically the requirement that papers be focused on research systems, networks, organisations or jurisdictions to be eligible for inclusion. While such a selection criterion was necessary to make our search tractable, it is likely that a much broader literature set would be relevant to the issues of governance that were the focus of our review. This is perhaps especially notable in relation to the fourth function of the HRS – producing/using health research – for which we identified very little research. A much more expansive review or, more feasibly, a series of reviews focused on specific research system functions, would add significantly to the evidence collected and might highlight governance issues not seen through this review.
Acknowledgements
We owe sincere thanks to Jeremy Grimshaw for helping to identify a productive way of narrowing the scope of our original ambition for this paper, to our expert Advisors – Emily Nicholas-Angl, Wayne Warry, Maureen O’Neil, Joshua Tepper and Paula Rochon – who informed and supported this work, to Ruhi Kiflen for her diligent assistance, and to the expert participants in a Round Table dialogue who provided insightful critiques of an earlier version (Lauren Ettin, John Lavis, Alies Maybee, Eddy Nason, Emily Nicholas-Angl, Kirk Nylen, Maureen O’Neil, Laura Williams). Thanks are also due to Adalsteinn Brown for having the foresight to anticipate the paper’s value and the energy to catalyse its production. Finally, we thank the Ontario SPOR Support Unit for funding this paper and acknowledge the support of Fiona Miller’s Chair in Health Management Strategies. Notwithstanding these debts, the thoughts presented here are our own.