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      Impact on the individual: what do patients and carers gain, lose and expect from being involved in research?

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          Abstract

          Background: Study feasibility and deliverability can benefit from involving patients and carers in the research process, known as patient and public involvement (PPI). There is less evidence on the experiences of patients and carers themselves and we require more information across a range of studies, health conditions and research stages.

          Aims: This study explored how patients and carers in eight diagnostic research specialties have been involved in research, their motivations and the impact involvement had on them.

          Method: 143 patients and carers across the Clinical Research Network (CRN) responded to an online semi-structured questionnaire (developed using participatory methodology). Quantitative and qualitative data were analysed.

          Results: A range of benefits were reported, including providing a life focus and an improved relationship with illness. Less positive experiences regarding time and money and lack of acknowledgement were also reported, along with suggestions for improvement.

          Conclusions: PPI confers many benefits on patients and carers which could increase PPI recruitment if made explicit. More involvement in study recruitment and dissemination would increase the effectiveness of PPI input. Involving a more varied socioeconomic demographic and at an earlier stage is vital. Financial support for lower earners and greater feedback following involvement should also be explored.

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          Most cited references34

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          Using thematic analysis in psychology

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            From passive subjects to equal partners: qualitative review of user involvement in research.

            The Department of Health and UK funding bodies have suggested that clinical academics work closely with mental health service users in research projects. Although there are helpful guidelines on the issues that have to be dealt with, there have been few examples of how this partnership research might be undertaken. To illustrate the challenges in joint research projects. We subjected the process of user involvement to ten questions which arose in the development of a joint research project. The answers are an amalgamation of the user and clinical researcher considerations and are affected by hindsight. The involvement of the user-researcher changed the focus of the study and its design and content. More attention was paid to the intervention itself and the way in which it was delivered. This process increased the amount of time taken to carry out and write up the project as well as incurring financial costs for user consultation payments and dissemination. This experience has clarified the contribution that users can make, for example by raising new research questions, by ensuring interventions are kept 'user friendly', and the selection of outcome measures.
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              Patient-reported outcome measures: are they patient-generated, patient-centred or patient-valued?

              In the past two decades, there has been a growing interest in the development of a more patient-centred approach to assessing treatment outcomes. This interest has resulted in the increasing use of patient-reported outcome measures (PROMs) in both clinical trials and usual clinical practice. To briefly discuss the paucity of efficacy and effectiveness studies in the field of mental health (exemplified by schizophrenia, depression and opioid dependence) that significantly incorporate the patient's perspective. The limited concordance between the perspectives of patients and clinicians in outcome assessment is also addressed. Finally, we propose a new PROM classification system based on the degree to which these instruments incorporate the patient's perspective. PROMs may differ little from traditional instruments unless they truly incorporate the patient's perspective and not just the perspectives of clinicians and researchers. Efforts to develop new PROMs that provide a more patient-centred outcome assessment should use qualitative and participatory methods to capture and incorporate patient perspectives and values.
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                Author and article information

                Journal
                J Ment Health
                J Ment Health
                IJMH
                ijmh20
                Journal of Mental Health (Abingdon, England)
                Taylor & Francis
                0963-8237
                1360-0567
                2 January 2016
                6 January 2016
                : 25
                : 1
                : 28-35
                Affiliations
                [ a ]Department of Psychology, King’s College London, Institute of Psychiatry, Psychology and Neuroscience , London, UK
                [ b ]Department of Psychological Medicine, King’s College London, Institute of Psychiatry, Psychology and Neuroscience , London, UK
                [ c ]King’s College London, Health Services and Population Research, Institute of Psychiatry, Psychology and Neuroscience , London, UK
                Author notes
                Correspondence: Joanne Ashcroft, Department of Psychology, King’s College London, Health Services and Population Research, Institute of Psychiatry, Psychology and Neuroscience , De Crespigny Park, London SE5 8AF, UK. E-mail: joanne.ashcroft@ 123456nihr.ac.uk
                Article
                1101424
                10.3109/09638237.2015.1101424
                4776699
                26733079
                9a4ebef4-374a-462b-aaa1-ac58c41c2d97
                © 2015 The Author(s). Published by Taylor & Francis

                This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License ( http://creativecommons.org/Licenses/by-nc-nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited, and is not altered, transformed, or built upon in any way.

                History
                : 19 March 2015
                : 9 September 2015
                : 11 September 2015
                Page count
                Pages: 8
                Categories
                Article
                Original Article

                Clinical Psychology & Psychiatry
                carers,clinical research network,healthcare research,patient and public involvement,ppi,research involvement,service users

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