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      Lay involvement in the analysis of qualitative data in health services research: a descriptive study

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          There is a consensus that patients and the public should be involved in research in a meaningful way. However, to date, lay people have been mostly involved in developing research ideas and commenting on patient information.

          We previously published a paper describing our experience with lay partners conducting observations in a study of how patients in hospital are involved with their medicines. In a later part of the same study, lay partners were also involved in analysing interviews that a researcher had conducted with patients, carers and healthcare professionals about patient and carer involvement with medicines in hospital. We therefore wanted to build on our previous paper and report on our experiences with lay partners helping to conduct data analysis. We therefore interviewed the lay members and researchers involved in the analysis to find out their views.

          Both lay members and researchers reported that lay partners added value to the study by bringing their own perspectives and identifying further areas for the researcher to look for in the interviews. In this way researchers and lay partners were able to work together to produce a richer analysis than would have been possible from either alone.

          Abstract

          Background It is recognised that involving lay people in research in a meaningful rather than tokenistic way is both important and challenging. In this paper, we contribute to this debate by describing our experiences of lay involvement in data analysis.

          Methods We conducted semi-structured interviews with the lay partners and researchers involved in qualitative data analysis in a wider study of inpatient involvement in medication safety. The interviews were transcribed verbatim and coded using open thematic analysis.

          Results We interviewed three lay partners and the three researchers involved. These interviews demonstrated that the lay members added value to the analysis by bringing their own perspectives; these were systematically integrated into the analysis by the lead researcher to create a synergistic output. Some challenges arose, including difficulties in recruiting a diverse range of members of the public to carry out the role; however there were generally fewer challenges in data analysis than there had been with our previous experience of lay partners’ involvement in data collection.

          Conclusions Lay members can add value to health services research by being involved in qualitative data analysis.

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          Most cited references8

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          PPI, paradoxes and Plato: who's sailing the ship?

          Over the last decade, patient and public involvement (PPI) has become a requisite in applied health research. Some funding bodies demand explicit evidence of PPI, while others have made a commitment to developing PPI in the projects they fund. Despite being commonplace, there remains a dearth of engagement with the ethical and theoretical underpinnings of PPI processes and practices. More specifically, while there is a small (but growing) body of literature examining the effectiveness and impact of PPI, there has been relatively little reflection on whether the concept/practice of PPI is internally coherent. Here, the authors unpick a 'paradox' within PPI, which highlights a tension between its moral and pragmatic motivations and its implementation. The authors argue that this 'professionalisation paradox' means we need to rethink the practice, and purpose, of PPI in research.
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            'What difference does it make?' Finding evidence of the impact of mental health service user researchers on research into the experiences of detained psychiatric patients.

            Interest in the involvement of members of the public in health services research is increasingly focussed on evaluation of the impact of involvement on the research process and the production of knowledge about health. Service user involvement in mental health research is well-established, yet empirical studies into the impact of involvement are lacking. To investigate the potential to provide empirical evidence of the impact of service user researchers (SURs) on the research process. The study uses a range of secondary analyses of interview transcripts from a qualitative study of the experiences of psychiatric patients detained under the Mental Health Act (1983) to compare the way in which SURs and conventional university researchers (URs) conduct and analyse qualitative interviews. Analyses indicated some differences in the ways in which service user- and conventional URs conducted qualitative interviews. SURs were much more likely to code (analyse) interview transcripts in terms of interviewees' experiences and feelings, while conventional URs coded the same transcripts largely in terms of processes and procedures related to detention. The limitations of a secondary analysis based on small numbers of researchers are identified and discussed. The study demonstrates the potential to develop a methodologically robust approach to evaluate empirically the impact of SURs on research process and findings, and is indicative of the potential benefits of collaborative research for informing evidence-based practice in mental health services.
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              Exploring perceived barriers, drivers, impacts and the need for evaluation of public involvement in health and social care research: a modified Delphi study

              Objective To 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. Background Internationally 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. Design Mixed method, three-phase, modified Delphi technique, conducted as part of a larger MRC multiphase project. Sample Clinical and non-clinical academics, members of the public, research managers, commissioners and funders. Findings This 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. Conclusions This 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.
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                Author and article information

                Contributors
                sara.garfield@imperial.nhs.uk
                Journal
                Res Involv Engagem
                Res Involv Engagem
                Research Involvement and Engagement
                BioMed Central (London )
                2056-7529
                20 August 2016
                20 August 2016
                2016
                : 2
                : 29
                Affiliations
                [1 ]GRID grid.417895.6, ISNI 0000000106932181, Centre for Medication Safety and Service Quality, , Imperial College Healthcare NHS Trust, ; London, UK
                [2 ]GRID grid.83440.3b, ISNI 0000000121901201, Research Department of Practice and Policy, , UCL School of Pharmacy, ; Mezzanine Floor, BMA House, Tavistock Square, London, UK
                [3 ]GRID grid.451052.7, ISNI 0000000405812008, Pharmacy Department, , Chelsea and Westminster Healthcare NHS Foundation Trust, ; London, UK
                [4 ]GRID grid.13097.3c, ISNI 0000000123226764, King’s College London, Faculty of Nursing and Midwifery and Imperial College Healthcare NHS Trust, London, ; 57 Waterloo Road, London, SE1 8WA UK
                Author information
                http://orcid.org/0000-0002-9980-0520
                Article
                41
                10.1186/s40900-016-0041-z
                5831865
                29062502
                d162b8dd-90e6-43fd-a14e-877600d273cf
                © The Author(s). 2016

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. 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.

                History
                : 30 March 2016
                : 5 August 2016
                Funding
                Funded by: The Health Foundation
                Award ID: 7205
                Award Recipient :
                Categories
                Research Article
                Custom metadata
                © The Author(s) 2016

                patient and public involvement,lay involvement,qualitative data analysis,open coding,health services research

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