The UK supports an unparalleled collection of large-scale population cohorts which have provided a wealth of longitudinal biological and social data for studying health and wellbeing throughout the lifecourse. The MRC’s 2014 Cohort Strategic review estimated a significant proportion of the UK population has participated in cohort studies. Estimates suggest that 2.5m have taken part, and currently around 2.2m people (3.5% of the population) are cohort members. However, participants’ experiences of taking part in cohort studies, and their attitudes towards the research that they are participating in, are relatively un-studied. What research there has been identified key issues around participation, information and consent.

This new research project seeks to build on previous work undertaken by the Health Experiences Research Group, in the Nuffield Department of Primary Care Health Sciences (HERG), on experiences of taking part in research. Previous studies have included experiences of taking part in clinical trials, biobanking and genomic research, all published as modules on Healthtalk.org (http://healthtalk.org/peoples-experiences/medical-research). In an era of rapid developments at the frontiers of medicine and technology, are our attitudes to personal data, data sharing and medical research changing? We seek to explore cohort participants’ views and experiences. Our aims with this new research project are to record the experiences of people who take part in cohort studies in the UK, to understand the motivations of people who agree to take part, their experience of receiving information, giving consent and participating, their attitudes to data sharing and their views about receiving results vis a vis confidentiality. This research will gather suggestions for improving recruiting and retention of participants and develop a web-based resource, published at Healthtalk.org, for other people invited to take part in cohort studies where they can find out more about what it is like to take part.