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      People powered research: what do communities identify as important for happy and healthy children and young people? A multi-disciplinary community research priority setting exercise in the City of Bradford, United Kingdom (UK)

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          Abstract

          Background

          Involving communities in research priority setting can increase the relevance and efficiency of research, leading to better health outcomes. However these exercises often lack clarity in how communities are involved and the extent to which priorities are acted upon is unclear. Seldom-heard groups, for example ethnic minorities may experience barriers to participation. We report methods and outcomes of an inclusive co-produced community research priority setting exercise within the multicultural and deprived city of Bradford, UK. The aim was to identify priorities for keeping children happy and healthy and was undertaken by the Born in Bradford (BiB) research programme to inform future research agendas.

          Methods

          A 12 member multi-disciplinary, multi-ethnic community steering group led the process using a modified James Lind Alliance approach between December 2018-March 2020. Research priorities were collected through a widely distributed paper and online survey. Respondents were asked to list three important things to keep children i) happy, ii) healthy and what needs to change to improve either health or happiness. Free text data were coded iteratively by community researchers, and shared priorities were co-produced in a series of workshops and meetings with the community steering group and community members.

          Results

          Five hundred eighty-eight respondents to the survey identified 5748 priorities, which were coded into 22 themes. These covered a range of individual, social and wider socioeconomic, environmental and cultural priorities. Diet/nutrition and exercise were most commonly identified as important for health, including what needs to change to improve health. For happiness, home life and family relationships, listening to children, and education/activities were the most commonly identified. Community assets were identified as important to change for both health and happiness. From the survey response the steering group developed 27 research questions. There were mapped onto existing and planned research agendas within BiB.

          Conclusions

          Communities identified both structural and individual factors as important priorities for health and happiness. We demonstrate how communities can be involved in priority setting using a co-productive approach in the hope this can be used as a model for others. The resulting shared research agenda will shape future research to improve the health of families living in Bradford.

          Supplementary Information

          The online version contains supplementary material available at 10.1186/s12939-023-01881-y.

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          Mapping the impact of patient and public involvement on health and social care research: a systematic review.

          There is an increasing international interest in patient and public involvement (PPI) in research, yet relatively little robust evidence exists about its impact on health and social care research. To identify the impact of patient and public involvement on health and social care research. A systematic search of electronic databases and health libraries was undertaken from 1995 to 2009. Data were extracted and quality assessed utilizing the guidelines of the NHS Centre for Reviews and Dissemination 2009 and the Critical Appraisal Skills Programme (CASP). Grey literature was assessed using the Dixon-Woods et al. (2005) checklist. All study types that reported the impact PPI had on the health and/or social care research study. A total of 66 studies reporting the impact of PPI on health and social care research were included. The positive impacts identified enhanced the quality and appropriateness of research. Impacts were reported for all stages of research, including the development of user-focused research objectives, development of user-relevant research questions, development of user-friendly information, questionnaires and interview schedules, more appropriate recruitment strategies for studies, consumer-focused interpretation of data and enhanced implementation and dissemination of study results. Some challenging impacts were also identified. This study provides the first international evidence of PPI impact that has emerged at all key stages of the research process. However, much of the evidence base concerning impact remains weak and needs significant enhancement in the next decade. © 2012 John Wiley & Sons Ltd.
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            Frameworks for supporting patient and public involvement in research: Systematic review and co‐design pilot

            Abstract Background Numerous frameworks for supporting, evaluating and reporting patient and public involvement in research exist. The literature is diverse and theoretically heterogeneous. Objectives To identify and synthesize published frameworks, consider whether and how these have been used, and apply design principles to improve usability. Search strategy Keyword search of six databases; hand search of eight journals; ancestry and snowball search; requests to experts. Inclusion criteria Published, systematic approaches (frameworks) designed to support, evaluate or report on patient or public involvement in health‐related research. Data extraction and synthesis Data were extracted on provenance; collaborators and sponsors; theoretical basis; lay input; intended user(s) and use(s); topics covered; examples of use; critiques; and updates. We used the Canadian Centre for Excellence on Partnerships with Patients and Public (CEPPP) evaluation tool and hermeneutic methodology to grade and synthesize the frameworks. In five co‐design workshops, we tested evidence‐based resources based on the review findings. Results Our final data set consisted of 65 frameworks, most of which scored highly on the CEPPP tool. They had different provenances, intended purposes, strengths and limitations. We grouped them into five categories: power‐focused; priority‐setting; study‐focused; report‐focused; and partnership‐focused. Frameworks were used mainly by the groups who developed them. The empirical component of our study generated a structured format and evidence‐based facilitator notes for a “build your own framework” co‐design workshop. Conclusion The plethora of frameworks combined with evidence of limited transferability suggests that a single, off‐the‐shelf framework may be less useful than a menu of evidence‐based resources which stakeholders can use to co‐design their own frameworks.
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              The dark side of coproduction: do the costs outweigh the benefits for health research?

              Background Coproduction, a collaborative model of research that includes stakeholders in the research process, has been widely advocated as a means of facilitating research use and impact. We summarise the arguments in favour of coproduction, the different approaches to establishing coproductive work and their costs, and offer some advice as to when and how to consider coproduction. Debate Despite the multiplicity of reasons and incentives to coproduce, there is little consensus about what coproduction is, why we do it, what effects we are trying to achieve, or the best coproduction techniques to achieve policy, practice or population health change. Furthermore, coproduction is not free risk or cost. Tensions can arise throughout coproduced research processes between the different interests involved. We identify five types of costs associated with coproduced research affecting the research itself, the research process, professional risks for researchers and stakeholders, personal risks for researchers and stakeholders, and risks to the wider cause of scholarship. Yet, these costs are rarely referred to in the literature, which generally calls for greater inclusion of stakeholders in research processes, focusing exclusively on potential positives. There are few tools to help researchers avoid or alleviate risks to themselves and their stakeholders. Conclusions First, we recommend identifying specific motivations for coproduction and clarifying exactly which outcomes are required for whom for any particular piece of research. Second, we suggest selecting strategies specifically designed to enable these outcomes to be achieved, and properly evaluated. Finally, in the absence of strong evidence about the impact and process of coproduction, we advise a cautious approach to coproduction. This would involve conscious and reflective research practice, evaluation of how coproduced research practices change outcomes, and exploration of the costs and benefits of coproduction. We propose some preliminary advice to help decide when coproduction is likely to be more or less useful.
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                Author and article information

                Contributors
                chris.cartwright@bthft.nhs.uk
                Journal
                Int J Equity Health
                Int J Equity Health
                International Journal for Equity in Health
                BioMed Central (London )
                1475-9276
                25 April 2023
                25 April 2023
                2023
                : 22
                : 71
                Affiliations
                GRID grid.418449.4, ISNI 0000 0004 0379 5398, Born in Bradford, Braford Institute for Health Research, Bradford Teaching Hospitals NHS Foundation Trust, ; Duckworth Lane, Bradford, BD9 6RJ UK
                Article
                1881
                10.1186/s12939-023-01881-y
                10125860
                37095507
                e65d5755-70bd-424b-be80-4a83eb08799d
                © The Author(s) 2023

                Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

                History
                : 21 March 2022
                : 3 April 2023
                Funding
                Funded by: NIHR Applied Research Collaboration Yorkshire and the Humber
                Award ID: NIHR200166
                Award ID: NIHR200166
                Award ID: NIHR200166
                Award Recipient :
                Funded by: ActEarly UK Prevention Research Partnership Consortium
                Award ID: MR/S037527/1
                Award ID: MR/S037527/1
                Award ID: MR/S037527/1
                Award Recipient :
                Categories
                Research
                Custom metadata
                © The Author(s) 2023

                Health & Social care
                priority setting,born in bradford,health,children,ethnicity,patient and public involvement,co-production

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