Cohort participants views on the development of Dementia Platform UK
Research type
Research Study
Full title
Following Participation: A qualitative study of cohort participants experiences of research and views on the development of Dementia Platform UK
IRAS ID
203816
Contact name
Sally Atkinson
Contact email
Sponsor organisation
Cambridge University
Duration of Study in the UK
0 years, 3 months, 26 days
Research summary
This qualitative research project examines the views of healthy participants in a cohort study involved in Dementias Platform UK (DPUK).\n\nUK cohort studies collect large amounts of valuable data on aging. To make best use of this data government and scientific bodies encourage collaboration and open data sharing. This is considered particularly important in dementias research where the diseases which cause dementia can begin up to fifteen years before a person experiences any symptoms. By collaborating with healthy, aging cohorts, researchers aim to increase understanding of the earliest stages of dementias and improve experimental research. This has resulted in DPUK, an MRC funded initiative, involving 33 cohort studies across the UK. \n\nDPUK promotes data-sharing on an unprecedented scale, and considers approaching existing, healthy cohort participants about dementia research. This has the potential to change the nature of observational cohorts and the experience of cohort participants. \n\nThe ‘Following Participation’ study explores cohort participant’s views on proposed developments, to ensure their needs and concerns are heard. The study is piloted with the local EPIC-Norfolk cohort, who participate in DPUK. The study asks cohort participants their thought and views on the changing nature of research in two areas:\n\n1.\tHow cohort data is collected, stored and shared for dementia research. Examples include data-sharing, data-linkage and participant re-identification.\n\n2.\tThe potential for re-contact for other forms of dementia research. Examples include wearable device research, phenotype research, brain donation and clinical trials.\n\nThis study examines the acceptability and feasibility of such proposals and the limits of re-contact. The study involves a focus group and a semi-structured interview. The focus group brings EPIC-Norfolk participants together to discuss their views. The follow-up interview examines participant’s motivations in more depth, addressing a broader range of factors, including personal experience and participant’s relationship with their cohort.\n\n
REC name
North West - Liverpool Central Research Ethics Committee
REC reference
16/NW/0270
Date of REC Opinion
14 Apr 2016
REC opinion
Favourable Opinion