Dataset Information

Public involvement in health research systems: a governance framework.

ABSTRACT:

Background

Growing 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.

Methods

We 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.

Results

We 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.

Conclusions

A 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.

SUBMITTER: Miller FA

PROVIDER: S-EPMC6080531 | biostudies-literature | 2018 Aug

REPOSITORIES: biostudies-literature

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Publications

Public involvement in health research systems: a governance framework.

Miller Fiona Alice FA Patton Sarah J SJ Dobrow Mark M Berta Whitney W

Health research policy and systems 20180806 1

<h4>Background</h4>Growing 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.<h4>Methods</h4>We drew on an established health research system framewo ...[more]

PMID: 30081919

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Project description:BACKGROUND:Health research has scientific, social and political impacts. To achieve such impacts, several institutions need to participate; however, health research funding institutions are seldom nominated in the literature as essential players. The attention they have received has so far focused mainly on their role in knowledge translation, informing policy-making and the need to organise health research systems. In this article, we will focus solely on the governance of national health research funding institutions. Our objectives are to identify the main functions of governance for such institutions and actionable governance functions. This research should be useful in several ways, including in highlighting, tracking and measuring the governance trends in a given funding institution, and to forestall low-level governance. METHODS:First, we reviewed existing frameworks in the grey literature, selecting seven relevant documents. Second, we developed an integrated framework for health research funding institution governance and management. Third, we extracted actionable information for governance by selecting a mix of North American, European and Asian institutions that had documentation available in English (e.g. annual report, legal status, strategy). RESULTS:The framework contains 13 functions - 5 dedicated to governance (intelligence acquisition, resourcing and instrumentation, relationships management, accountability and performance, and strategy formulation), 3 dedicated to management (priority-setting, financing and knowledge transfer), and 5 dedicated to transversal logics that apply to both governance and management (ethics, transparency, capacity reinforcement, monitoring and evaluation, and public engagement). CONCLUSIONS:Herein, we provide a conceptual contribution for scholars in the field of governance and health research as well as a practical contribution, with actionable functions for high-level managers in charge of the governance of health research funding institutions.

Project description:BackgroundDue to the uncommon nature of large-scale disasters and emergencies, public health practitioners often turn to simulated emergencies, known as "exercises", for preparedness assessment and improvement. Under the right conditions, exercises can also be used to conduct original public health systems research. This paper describes the integration of a research framework into a statewide operations-based exercise program in California as a systems-based approach for studying public health emergency preparedness and response.MethodsWe developed a research framework based on the premise that operations-based exercises conducted by medical and public health agencies can be described using epidemiologic concepts. Using this framework, we conducted a survey of key local and regional medical and health agencies throughout California following the 2010 Statewide Medical and Health Exercise. The survey evaluated: (1) the emergency preparedness capabilities activated and functions performed in response to the emergency scenario, and (2) the major challenges to inter-organizational communications and information management.ResultsThirty-five local health departments (LHDs), 24 local emergency medical services (EMS) agencies, 121 hospitals, and 5 Regional Disaster Medical and Health Coordinators/Specialists (RDMHC) responded to our survey, representing 57%, 77%, 26% and 83%, respectively, of target agencies in California. We found two sets of response capabilities were activated during the 2010 Statewide Exercise: a set of core capabilities that were common across all agencies, and a set of agency-specific capabilities that were more common among certain agency types. With respect to one response capability in particular, inter-organizational information sharing, we found that the majority of respondents' comments were related to the complete or partial failure of communications equipment or systems.ConclusionsUsing the 2010 Statewide Exercise in California as an opportunity to develop our research framework, we characterized several aspects of the public health and medical system's response to a standardized emergency scenario. From a research perspective, this study provides a potential new framework for conducting exercise-based research. From a practitioner's perspective, our results provide a starting point for preparedness professionals' dialogue about expected and actual organizational roles, responsibilities, and resource capacities within the public health system. Additionally, the identification of specific challenges to inter-organizational communications and information management offer specific areas for intervention.

Project description:Background:High quality public engagement and involvement (PEI) in data-intensive health research is seen as one way of ensuring that social legitimacy, i.e. a social license, is conferred through public acceptance of the need for research use of their data. This is a complex research area, and portfolios of involvement have been suggested, but not yet evaluated, to support the role of public contributors. The study aim was to evaluate if and how membership of a data-intensive research public forum can act as a mechanism for enhancing members' personal development. Our objective was to understand the circumstances and mechanisms that help to explain how, why and for whom involvement with a public forum enhanced those members' personal development. Method:Qualitative data were collected from 15 current and previous members, via semi-structured interviews, notes from meetings, and consultations with and feedback from members. Data were critically compared, contrasted and reviewed until no new themes could be discerned and then condensed into context-mechanism-outcome (CMO) configurations. Realist evaluation was used to generate a theoretical and empirical appreciation of the contextual circumstances and mechanisms which help to explain the extent to which involvement with a public forum would enhance members' personal development and, if so, how, why, and for whom. Results:Three CMO configurations were identified. All of them showed that using the portfolio facilitated growth in forum members' personal development, but only where the members valued using the portfolio. This was particularly so for female members. Members valued the portfolio in one or more of three ways: as a tool to record and evidence activities, to facilitate reflective practice or as a guiding framework. Conclusions:Data analysis and consideration of the three CMO configurations suggests a refined middle range theory that 'The use of a portfolio as a framework for learning in a public forum will facilitate members' personal development if they value its use as a framework for learning'. Further work is needed to confirm these findings both elsewhere in data-intensive health research and in other complex research areas using public forums for PEI. Plain English summary:Public engagement and involvement in health research is now well established and makes a valuable contribution to the research process. However, little is known about its impact on participants. This article investigates how involvement in a data-intensive health research public forum impacts on public forum members, rather than the research process. Personal involvement portfolios were used to support their involvement work and help evaluate if and how involvement in research activities enhanced members' personal development. Taking a realist evaluation approach, 'Context-Mechanism-Outcome' configurations were used to explore how membership of a public forum might enhance public forum members' personal development. The Context-Mechanism-Outcome configuration refers to an exploration of what influences the extent to which an intervention is successful or unsuccessful in producing positive outcomes and tries to identify the reasons why it is successful for some and unsuccessful for others. However, evidence from this realist evaluation recommends that engagement and involvement should always be underpinned by procedures which ensure that public contributors receive ongoing and tailored guidance and support throughout the process.

Project description:Plain english summaryBackground Patient and public involvement means researchers working with members of the public, patients or carers to jointly plan and carry out research.Aim This article is written by members of three involvement groups, and the university employees that they work with. We wanted to jointly reflect on what enables our collaborative work, and what the challenges are for everyone involved.What we did and how we did it We wanted to establish what the literature defines as 'good' public involvement and compare this with processes and practices in our involvement groups. We therefore carried out a literature review and each group met separately to discuss what characterises good involvement, and what the challenges are. From these discussions we developed a set of descriptions about each group. We compared the literature review findings with what came out of the discussions within the involvement groups.Findings Some of the involvement principles from the literature were similar to the priorities of the involvement groups. In addition, the groups identified characteristics of 'good' involvement practice that were not reported in the literature: passion and enthusiasm, informal and welcoming meeting spaces, and opportunities to share lived experiences. In this article we present examples of how principles for good involvement are practiced in these groups, and difficulties we have experienced.AbstractBackground Patient and public involvement is important for producing relevant and accessible health research. Evidence of impact from involvement is growing, but there is also a need for research on how to create conditions for meaningful collaborations between researchers and public advisers.Objective We report on a co-produced self-reflective evaluation of involvement practices in three UK research programmes.Methods A structured review identified research-based principles for 'good' public involvement in research. In parallel, members of three involvement groups co-developed statements on how the groups work, and enablers and challenges to collaborative research. The author team analysed these statements using the findings from the review.Results We identified 11 international articles reporting research-based principles for involvement published between 2013 and 2017. We identified five 'values' and seven 'practice principles' for 'good' involvement. There was convergence between these principles and the priorities of the involvement groups. But the groups also identified additional good involvement practice that were not reported by the literature: passion, enthusiasm, informal and welcoming meeting spaces, and opportunities to share lived experiences. We present examples of how principles for good involvement are practiced in these groups, and highlight principles that have been challenging to implement.Conclusions Ongoing appraisal of public involvement is crucial. We present a process for self-evaluation, illuminate what 'good' means to researchers and public advisers involved in research, and identify areas for improvement. We conclude that provision of resources that enable support to public advisers in turn enable universities and research teams to implement other principles of good involvement.

Project description:BackgroundSmartphones are being increasingly used for research owing to their multifunctionality and flexibility, and crowdsourced research using smartphone applications (apps) is effective in the early detection and management of chronic diseases. We developed the AllerSearch app to gather real-world data on individual subjective symptoms and lifestyle factors related to hay fever. This study established a foundation for interactive research by adopting novel, diverse perspectives accrued through implementing the principles of patient and public involvement (PPI) in the development of our app.MethodsPatients and members of the public with a history or family history of hay fever were recruited from November 2019 to December 2021 through a dedicated website, social networking services, and web briefing according to the PPI Guidebook 2019 by the Japan Agency for Medical Research and Development. Nine opinion exchange meetings were held from February 2020 to December 2021 to collect opinions and suggestions for updating the app. After each meeting, interactive evaluations from PPI contributors and researchers were collected. The compiled suggestions were then incorporated into the app, establishing an active feedback loop fed by the consistently interactive infrastructure.ResultsFour PPI contributors (one man and three women) were recruited, and 93 items were added/changed in the in-app survey questionnaire in accordance with discussions from the exchange meetings. The exchange meetings emphasized an atmosphere and opportunity for participants to speak up, ensuring frequent opportunities for them to contribute to the research. In March 2020, a public website was created to display real-time outcomes of the number of participants and users' hay-fever-preventative behaviors. In August 2020, a new PPI-implemented AllerSearch app was released.ConclusionsThis study marks the first research on clinical smartphone apps for hay fever in Japan that implements PPI throughout its timeline from research and development to the publication of research results. Taking advantage of the distinct perspectives offered by PPI contributors, a step was taken toward actualizing a foundation for an interactive research environment. These results should promote future PPI research and foster the establishment of a social construct that enables PPI efforts in various fields.

Dataset Information

Public involvement in health research systems: a governance framework.

Background

Methods

Results

Conclusions

Publications

Public involvement in health research systems: a governance framework.

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