Participant experiences of changing research practices. Version 1
Research type
Research Study
Full title
Following participation: A study of participant experiences of research and changing research practices.
IRAS ID
192458
Contact name
Carolyn Read
Contact email
Sponsor organisation
University of Cambridge
Duration of Study in the UK
0 years, 5 months, 0 days
Research summary
This qualitative study examines how participants within cohort studies, such as EPIC-Norfolk, view and experience changes in research which arise from the development of novel practices and collaborations such as Dementia Platform UK (DPUK).
Long term studies such as EPIC-Norfolk follow healthy participants over time. Such studies provide essential information for research into complex fields such as dementias. To make the best use of the information they capture, such studies evolve as new technologies and new ways of doing research become available. Large-scale initiatives such as DPUK encourage collaboration across studies to increase our understanding of dementias and speed up the development of future experimental medicines. Such collaborations propose changes in the way research data is collected, stored and shared, and how observational research is coordinated with other types of research opportunities. Whilst research has looked at participant views on specific research proposals, little research has examined more broadly how participants experience such changing and evolving practices.
This study involves one three-hour focus-group and one-to-one interviews. The focus group will bring together a range of participants to discuss their views, thoughts and experiences of past, current and future changing research practices. The workshop focuses on two themes: changing data practices and changing coordination of research. The focus-group will be followed by a one-to-one interview to examine in more depth how participants view research and the kinds of relationships in a cohort which shape these views.
This study will inform both DPUK and the long-term studies involved about participant perspectives and examine best practice in managing and engaging change in cohort studies.
REC name
Yorkshire & The Humber - South Yorkshire Research Ethics Committee
REC reference
16/YH/0082
Date of REC Opinion
4 Mar 2016
REC opinion
Unfavourable Opinion