A SHARED study-the benefits and costs of setting up a health research study involving lay co-researchers and how we overcame ... View Full Text


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Article Info

DATE

2016-03-03

AUTHORS

Carole Mockford, Matt Murray, Kate Seers, Jan Oyebode, Richard Grant, Sue Boex, Sophie Staniszewska, Yvonne Diment, Jim Leach, Uma Sharma, Rosemary Clarke, Rashida Suleman

ABSTRACT

Plain English summaryIn the United Kingdom (UK), official bodies such as the Department of Health and research funders such as the National Institute for Health Research support and encourage lay involvement in all stages of research studies. The SHARED study has had substantial patient and public involvement (PPI) from developing the idea to dissemination. The aim of the study has been to develop recommendations led by service users for health and social care professionals to use at hospital discharge and in care planning for people living with memory loss and their carers. This article is about how the study started and the benefits, costs and challenges we encountered as the lead and lay co-researchers. Once we were successful with the grant application, we had to recruit and train the lay co-researchers and obtain various approvals before we could start the project. We had various support from funders, the Research Ethics Committee, lay members of Alzheimer’s Society and from the lay co-researchers. However, we encountered some challenges with paying the lay co-researchers and with getting the approval for the co-researchers to interview staff on NHS premises. The challenges were overcome eventually but some aspects of the study changed because of this. We suggest that some changes could be made to the research system which would lead to greater inclusion of the lay co-researchers in research studies and would make the process more straightforward for the research team.AbstractBackgroundInvolving 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.MethodsThis 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.ResultsThe 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.DiscussionOverall 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.ConclusionBuy-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. More... »

PAGES

8

Identifiers

URI

http://scigraph.springernature.com/pub.10.1186/s40900-016-0021-3

DOI

http://dx.doi.org/10.1186/s40900-016-0021-3

DIMENSIONS

https://app.dimensions.ai/details/publication/pub.1044002559

PUBMED

https://www.ncbi.nlm.nih.gov/pubmed/29062509


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67 health
68 health research
69 health research studies
70 high levels
71 hospital
72 hospital discharge
73 idea
74 important strategic priority
75 inclusion
76 inclusivity
77 initial research idea
78 interest
79 involvement
80 lay
81 lay groups
82 lay involvement
83 lay members
84 lead
85 levels
86 loss
87 members
88 membership
89 memory loss
90 method
91 official bodies
92 organisational challenges
93 organisational culture
94 paper
95 part
96 partnership
97 passport
98 patients
99 payment methods
100 people
101 planning
102 potential
103 premise
104 priority
105 process
106 professionals
107 project
108 public
109 public involvement
110 recommendations
111 recruitment time
112 reimbursement
113 requirements
114 research
115 research costs
116 research funders
117 research ideas
118 research studies
119 research support
120 research system
121 research team
122 role
123 sector
124 service user involvement
125 service users
126 smoother process
127 social care professionals
128 society
129 staff
130 stage
131 stages of research
132 start
133 start of projects
134 strategic priorities
135 study
136 study group
137 substantial patient
138 support
139 system
140 team
141 third sector
142 time
143 training
144 training days
145 trust
146 user involvement
147 users
148 volunteer group
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