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Values associated with public involvement in health and social care research: a narrative review.

ABSTRACT: Much has been written about public involvement (PI) in health and social care research, but underpinning values are rarely made explicit despite the potential for these to have significant influence on the practice and assessment of PI.The narrative review reported here is part of a larger MRC-funded study which is producing a framework and related guidance on assessing the impact of PI in health and social care research. The review aimed to identify and characterize the range of values associated with PI that are central elements of the framework.We undertook a review and narrative synthesis of diverse literatures of PI in health and social care research, including twenty existing reviews and twenty-four chapters in sixteen textbooks.Three overarching value systems were identified, each containing five value clusters. (i) A system concerned with ethical and/or political issues including value clusters associated with empowerment; change/action; accountability/transparency; rights; and ethics (normative values). (ii). A system concerned with the consequences of public involvement in research including value clusters associated with effectiveness; quality/relevance; validity/reliability; representativeness/objectivity/generalizability; and evidence (substantive values). (iii) A system concerned with the conduct of public involvement in including value clusters associated with Partnership/equality; respect/trust; openness and honesty; independence; and clarity (process values).Our review identified three systems associated with PI in health and social care research focused on normative, substantive and process values. The findings suggest that research teams should consider and make explicit the values they attach to PI in research and discuss ways in which potential tensions may be managed in order to maximize the benefits of PI for researchers, lay experts and the research.

SUBMITTER: Gradinger F

PROVIDER: S-EPMC5060838 | biostudies-other | 2015 Oct

REPOSITORIES: biostudies-other

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Values associated with public involvement in health and social care research: a narrative review.

Gradinger Felix F Britten Nicky N Wyatt Katrina K Froggatt Katherine K Gibson Andy A Jacoby Ann A Lobban Fiona F Mayes Debbie D Snape Dee D Rawcliffe Tim T Popay Jennie J

Health expectations : an international journal of public participation in health care and health policy 20131210 5

<h4>Background</h4>Much has been written about public involvement (PI) in health and social care research, but underpinning values are rarely made explicit despite the potential for these to have significant influence on the practice and assessment of PI.<h4>Objective</h4>The narrative review reported here is part of a larger MRC-funded study which is producing a framework and related guidance on assessing the impact of PI in health and social care research. The review aimed to identify and char ...[more]

PMID: 24325553

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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:BackgroundThis study aims to assess preferences and values for priority setting in healthcare in Chile through an original and innovative survey method. Based on the answers from a previous survey that look into the barriers the Chilean population face, this study considers the preferences of the communities overcoming those barriers. As a result six programs were identified: (1) new infrastructure, (2) better healthcare coverage, (3) increasing physicians/specialists, (4) new informatics systems, (5) new awareness healthcare programs, and (6) improving availability of drugs.MethodsWe applied an innovative survey method developed for this study to sample subjects to prioritize these programs by their opinion and by allocating resources. The survey also asked people's preferences for a distributive justice principle for healthcare to guide priority setting of services in Chile. The survey was conducted with a sample of 1142 individuals.ResultsMore than half of the interviewees (56.4%) indicated a single program as their first priority, while 20.1% selected two of them as their first priority. To increase the number of doctors/specialists and improve patient-doctor communication was the program that obtained the highest priority. The second and third priorities correspond to improving and investing in infrastructure and expanding the coverage of healthcare insurances. Additionally, the results showed that equal access for equal healthcare is the principle selected by the majority to guide distributive justice for the Chilean health system.ConclusionsThis study shows how a large population sample can participate in major decision making of national health policies, including making a choice of a distributive justice principle. Despite the complexity of the questions asked, this study demonstrated that with an innovative method and adequate guidance, average population is capable of engaging in expressing their preferences and values. Results of this study provide policy-makers useful community generated information for prioritizing policies to improve healthcare access.

Project description:ObjectiveTo explore areas of consensus and conflict in relation to perceived public involvement (PI) barriers and drivers, perceived impacts of PI and ways of evaluating PI approaches in health and social care research.BackgroundInternationally and within the UK the recognition of potential benefits of PI in health and social care research is gathering momentum and PI is increasingly identified by organisations as a prerequisite for funding. However, there is relatively little examination of the impacts of PI and how those impacts might be measured.DesignMixed method, three-phase, modified Delphi technique, conducted as part of a larger MRC multiphase project.SampleClinical and non-clinical academics, members of the public, research managers, commissioners and funders.FindingsThis study found high levels of consensus about the most important barriers and drivers to PI. There was acknowledgement that tokenism was common in relation to PI; and strong support for the view that demonstrating the impacts and value of PI was made more difficult by tokenistic practice. PI was seen as having intrinsic value; nonetheless, there was clear support for the importance of evaluating its impact. Research team cohesion and appropriate resources were considered essential to effective PI implementation. Panellists agreed that PI can be challenging, but can be facilitated by clear guidance, together with models of good practice and measurable standards.ConclusionsThis study is the first to present empirical evidence of the opinions voiced by key stakeholders on areas of consensus and conflict in relation to perceived PI barriers and drivers, perceived impacts of PI and the need to evaluate PI. As such it further contributes to debate around best practice in PI, the potential for tokenism and how best to evaluate the impacts of PI. These findings have been used in the development of the Public Involvement Impact Assessment Framework (PiiAF), an online resource which offers guidance to researchers and members of the public involved in the PI process.

Project description:IntroductionDespite the potential of social media to influence public health and generate insights, the process of monitoring and analyzing the dissemination of health care messages on social media has been described as difficult and in need of improvement.ObjectivesThe objective of this study was to describe and demonstrate a reproducible methodology for cataloging and analyzing health care-related social media comments and provide insight into how clinicians and members of the general public respond to health care messaging on social media.MethodsWe collected social media comments related to the American Dental Association's 2016 "Evidence-Based Clinical Practice Guideline for the Use of Pit-and-Fissure Sealants" between April 10, 2017, and October 31, 2017, from Facebook, Twitter, LinkedIn, Reddit, and online message boards for the New York Times, FiveThirtyEight, and Dentaltown. Using data provided in the comments, we conducted engagement analysis as well as content, network, and sentiment analysis across 8 categories.ResultsWe collected 671 comments. Among our findings, Facebook (472 of 671) was the most popular platform among commentators; almost half of all comments (335 of 671) aligned with the recommendations of the 2016 American Dental Association sealants guideline; clinicians were more likely than the general public to like a comment that suggested an improvement to the guideline; and >75% of comments (521 of 671) were supported by anecdotal evidence.ConclusionAs the prevalence of anecdotes on social media suggests, the likelihood of falsehoods spreading on social media is high. Insights gleaned from the methodology described in this research could help combat the spread of such misinformation by providing disseminators of health care messaging with insight into their target audiences. Armed with this knowledge, disseminators can craft health care messages that more effectively engage clinicians and the general public.Knowledge transfer statementThe methodology used in this research provides a reproducible strategy for tracking social media engagement with health care messages. Engagement results can assist future delivery of health care messages to key stakeholders and ensure better implementation and adoption of these communications.

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Values associated with public involvement in health and social care research: a narrative review.

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Values associated with public involvement in health and social care research: a narrative review.

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