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A SHARED study-the benefits and costs of setting up a health research study involving lay co-researchers and how we overcame the challenges
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Mockford, Carole, Murray, Matt, Seers, Kate, Oyebode, Jan, Grant, Richard, Boex, Sue, Staniszewska, Sophie, Diment, Yvonne, Leach, Jim, Sharma, Uma, Clarke, Rosemary and Suleman, Rashida (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). pp. 1-12. doi:10.1186/s40900-016-0021-3 ISSN 2056-7529.
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Official URL: http://dx.doi.org/10.1186/s40900-016-0021-3
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.
Conclusion:
Buy-in to service user involvement in research studies could be improved by clarifying the requirements for NHS Trust approval and by simplifying the system for financial reimbursement to lay co-researchers. This would improve inclusivity and provide a smoother process for the research team and the co-researchers.
| Item Type: | Journal Article | ||||||||
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| Subjects: | R Medicine > RA Public aspects of medicine | ||||||||
| Divisions: | Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School > Health Sciences > Warwick Research in Nursing > Royal College of Nursing Research Institute (RCN) (- July 2017) Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School |
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| Library of Congress Subject Headings (LCSH): | Medicine -- Research -- Methodology, Medical research personnel | ||||||||
| Journal or Publication Title: | Research Involvement and Engagement | ||||||||
| Publisher: | BioMed Central Ltd. | ||||||||
| ISSN: | 2056-7529 | ||||||||
| Official Date: | 3 March 2016 | ||||||||
| Dates: |
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| Volume: | 2 | ||||||||
| Number: | 8 | ||||||||
| Number of Pages: | 12 | ||||||||
| Page Range: | pp. 1-12 | ||||||||
| DOI: | 10.1186/s40900-016-0021-3 | ||||||||
| Status: | Peer Reviewed | ||||||||
| Publication Status: | Published | ||||||||
| Access rights to Published version: | Restricted or Subscription Access | ||||||||
| Date of first compliant deposit: | 4 April 2016 | ||||||||
| Date of first compliant Open Access: | 4 April 2016 | ||||||||
| Funder: | National Institute for Health Research (Great Britain) (NIHR) | ||||||||
| Grant number: | PB-PG-1112-29064 (NIHR) |
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