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    A SHARED study the benefits and costs of setting up a health research study involving lay coresearchers and how we overcame the challenges

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    Publication date
    2016-03-03
    Author
    Mockford, C.
    Murray, M.
    Seers, K.
    Oyebode, Jan R.
    Grant, R.
    Boex, S.
    Staniszewska, S.
    Diment, Y.
    Leach, J.
    Sharma, U.
    Clarke, R.
    Suleman, R.
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    Keyword
    Lay co-researcher; Service users; Payment settings; Health research; NHS Trust approval; Dementia; Memory loss
    Rights
    © 2016 Mockford et al. This 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.
    Peer-Reviewed
    Yes
    
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    Abstract
    Background: Involving patients and the public in all stages of research has been the focus of the SHARED study. Patient and public involvement (PPI) is an important strategic priority for the Department of Health and funders such as the National Institute for Health Research. The aim of this paper is to describe the benefits, challenges and costs involved in setting up the research study with lay members as part of the research team. The study focused on developing service user-led recommendations for people with memory loss and their carers, on discharge from acute hospital to the community. Methods: This began with a discussion of an initial research idea with a lay group of carers and people living with dementia. Once funded, approval was sought from the Research Ethics Committee and NHS Trusts to conduct the research including the active involvement of lay co-researchers. Finally, to recruit, train and pay lay co-researchers in their role. Results: The benefits of PPI have included developing ideas which are important to people living with memory loss; support for PPI received from the funders and research ethics committee, high levels of interest from volunteer groups, and lasting enthusiasm from many of the co-researchers. Organisational challenges were met in the requirement for research passports and with payment methods for the co-researchers. Training was beneficial but incurred extra costs for repeated training days. Discussion: Overall the benefits outweighed the challenges which were overcome to varying degrees. The lay co-researchers gained membership of a study group and a beneficial partnership developed with the third sector. The biggest challenge was in overcoming the differences in approach to lay co-researchers between NHS Trusts. Organisational culture has been slow to incorporate PPI and this has not yet been fully addressed. It has the potential to delay the start of projects, affect recruitment time, incur extra research costs and disadvantage PPI.
    URI
    http://hdl.handle.net/10454/7861
    Version
    published version paper
    Citation
    Mockford C, Murray M, Seers K, Oyebode JR, Grant R, Boex S, Staniszewska S, Diment Y, Leach J, Sharma U, Clarke R and Suleman R (2016) A SHARED study - the benefits and costs of setting up a health research study involving lay co-researchers and how we overcame the challenges. Research Involvement and Engagement. 2(8)
    Link to publisher’s version
    http://dx.doi.org/10.1186/s40900-016-0021-3
    Type
    Article
    Collections
    Health Studies Publications

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