Yes / 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.
| Identifer | oai:union.ndltd.org:BRADFORD/oai:bradscholars.brad.ac.uk:10454/7861 |
| Date | 10 February 2016 |
| Creators | Mockford, C., Murray, M., Seers, K., Oyebode, Jan, Grant, R., Boex, S., Staniszewska, S., Diment, Y., Leach, J., Sharma, U., Clarke, R., Suleman, R. |
| Source Sets | Bradford Scholars |
| Language | English |
| Detected Language | English |
| Type | Article, Published version |
| Rights | © 2016 The Authors. This is an Open Access article distributed under the Creative Commons CC-BY license (http://creativecommons.org/licenses/by/4.0/), CC-BY |
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