University of Cambridge NHS health data consent survey
Research type
Research Study
Full title
University of Cambridge NHS health data consent survey
IRAS ID
268811
Contact name
Stephen Kelleher
Contact email
Sponsor organisation
Cambridge and peterborough NHS Foundation Trust and The University of Cambridge
Clinicaltrials.gov Identifier
Awaited, NIHR
Duration of Study in the UK
0 years, 5 months, 25 days
Research summary
This study is an anonymous online survey to establish patient and public views on the sharing of identifiable health data for clinical purposes, and de-identified health data for research within the UK. By health data we mean any information collected about a person’s health, including things like medical notes, blood test results, etc. This may have personal information such as names and addresses attached (identifiable), or personal information removed (de-identified). Currently there is only limited sharing of health data for clinical purposes via implicit consent across the NHS. Recent reviews of public attitudes to using patient health data for research found little research about how acceptable it is to share patient health data for groups with specific health conditions, and that sharing some types of sensitive data (on mental health, sexual health, sexuality, religion, etc.) held greater concern than for other types of data.
This study seeks opinions on whether the public holds different views about the sharing of mental versus physical health data, and, in the context of research, about structured versus “free text” de-identified data. It will also seek views about a national consent form, about data linkage for research, and about a national web portal to sign up to be contacted about health research.
The survey is open to anyone residing in the UK over the age of 16 (or under 16 with parental permission) who can access the online survey. The survey takes approximately 18-25 minutes to complete but does not have to be completed in one sitting. It does ask questions about the respondent’s own physical and mental health, and some personal demographics, but all questions have a “prefer not to answer” choice. The study aims to recruit >1000 people over 6 months.REC name
East of Scotland Research Ethics Service REC 1
REC reference
19/ES/0144
Date of REC Opinion
20 Dec 2019
REC opinion
Further Information Favourable Opinion