MIDAS-APP
Research type
Research Study
Full title
Meaningful Integration of Data, Analytics and Service, Acceptability Project Pilot
IRAS ID
272726
Contact name
Paul Carlin
Contact email
Sponsor organisation
South Eastern Health and Social Care Trust
Clinicaltrials.gov Identifier
N/A, N/A
Duration of Study in the UK
0 years, 3 months, 31 days
Research summary
This study aims to explore what might influence a group of cardiac patients when asked to consider consenting to participate in a research registry. Participants will be asked to complete a questionnaire to assess attitudes to sharing and use in the context of a cardiac research registry.
The idea of sharing data for patient benefit is not new, yet in the context of understanding what may or may not assist patients in understanding what their data is used for, or the potential value at individual, organisational and policy level there appears to be a paucity in the literature. Work has been done in respect of notions of consent, but focused on the clinical dynamic. This project will look at the specific context of using data (annonymised) from a registry and patients (chest pain clinic patients) and what they both understand and are comfortable sharing.
Within the current rules and regulations registries and anonymised data have a somewhat privileged position, in that they are exempt from certain aspects of legislation. Yet, when one examines care.data, google deep mind and Cambridge Analytica's use cases whether in the use of anonymised and/or personal identified data, there has been significant disquiet about some of these uses.
The research team wish to try, in a pilot project what may influence patients permission for data use and thus potentially how this might influence mechanisms of governance around this.
Through the use of a questionnaire, which in a preamble describes a cardiac research registry, participants will be asked to share both their understanding and attitudes to suggested use, which will be analysed. Demographics will be taken to explore patterns.REC name
HSC REC B
REC reference
19/NI/0184
Date of REC Opinion
21 Oct 2019
REC opinion
Further Information Favourable Opinion