Dataset Information

Public involvement in health research: what does 'good' look like in practice?

ABSTRACT: Plain English summary:Background 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. Abstract:Background 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.

SUBMITTER: Liabo K

PROVIDER: S-EPMC7110674 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Public involvement in health research: what does 'good' look like in practice?

Liabo Kristin K Boddy Kate K Bortoli Silvia S Irvine Jenny J Boult Heather H Fredlund Mary M Joseph Neil N Bjornstad Gretchen G Morris Christopher C

Research involvement and engagement 20200331

<h4>Plain english summary</h4><b>Background</b> Patient and public involvement means researchers working with members of the public, patients or carers to jointly plan and carry out research.<b>Aim</b> 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.<b>What we did and how we did it</b> We wanted to establish what ...[more]

PMID: 32266085

Similar Datasets

Project description: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.

Project description:AimSince 2011 the Centers for Disease Control and Prevention's Web-based Injury Statistics Query and Reporting System (WISQARS) has demonstrated per-injury average and population total medical and non-medical costs of injuries by type (such as unintentional cut/pierce) in the USA. This article describes the impact of data and methods changes in the newest version of WISQARS Cost of Injury.MethodsData sources and methods were compared for the legacy version of the WISQARS Cost of Injury website (available 2011-2021; most recent prior update was published in 2014 with 2010 injury incidence and costs) and the new version (published 2021; 2015-present injury incidence and costs). Cost data sources were updated for the new website and the basis for medical costs and non-fatal injury work loss costs changed from mathematical modelling (combined estimates from multiple data sources) in the legacy website to statistical modelling of actual injury-related medical and work loss financial transactions in the new website. Monetary valuation of non-medical costs for injury deaths changed from lost employment income and household work in the legacy website to value of statistical life. Quality of life loss costs were added for non-fatal injuries. Per-injury average medical and non-medical costs by injury type (mechanism and intent) and total population injury costs were compared for years 2010 (legacy website data) and 2020 (new website data) to illustrate the impact of data and methods changes on reported costs in the context of changed annual injury incidence.ResultsOwing to more comprehensive cost capture yielding higher per-injury average costs for most injury types-including those with high incidence in 2020 such as unintentional poisoning and unintentional falls-reported total US medical and non-medical injury costs were substantially higher in 2020 (US$4.6 trillion) compared with 2010 (US$693 billion) (both 2020 USD).Conclusions and relevanceNew data and methods increased the injury costs reported in WISQARS Cost of Injury. Researchers and public health professionals can use this information to proficiently communicate the burden of injuries and violence in terms of economic cost.

Project description:BackgroundOver the past decades, there has been a growing international interest in user involvement in healthcare research. However, evidence on the management and impact of patient and public involvement in Nordic healthcare research remains limited.ObjectiveThe aim was to explore and delineate the current state, practice, and impact of patient and public involvement in healthcare research across different areas of healthcare and patient populations in the Nordic countries.MethodsWe conducted a scoping review using nine scientific databases and gray literature from 1992-2023. Sources were categorized as empirical or non-empirical. We used the Guidance for Reporting Involvement of Patients and the Public Short Form 2 checklist for reporting of patient and public involvement in healthcare research and the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews.ResultsA total of 56 publications were included, consisting of 39 empirical and 17 non-empirical sources. Gray literature varied among countries and institutions encompassing different types of documents. We found an increase in the number of publications on patient and public involvement in Nordic healthcare research. This was evidenced by the growing number of references and institutional initiatives intended at involving the public, indicating the increasing emphasis on patient and public involvement in Nordic healthcare research. The terminology used to describe patient and public involvement varied over time. However, there has been a gradual narrowing down of terms as the concept of PPI has become more integrated into research practices, particularly with the involvement of funding agencies.ConclusionThe utilization of patient and public involvement in Nordic healthcare research has substantially increased, proliferated, and gained widespread acceptance across diverse healthcare domains. The variety of approaches challenged our scoping review in terms of systematic description and impact. Patient and public involvement was applied in one or more research stages using different methodologies and terms. International agreement on terms and definitions is needed for reliable interpretation of the use of patient and public involvement in Nordic healthcare research.

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.

Dataset Information

Public involvement in health research: what does 'good' look like in practice?

Publications

Public involvement in health research: what does 'good' look like in practice?

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets