Tools for Life: Data Sharing and Public Health
Research type
Research Study
Full title
Tools for Life: Engaging Patients and the Public in a Conversation about Data Sharing and Public Health
IRAS ID
275957
Contact name
Jonathan Foster
Contact email
Sponsor organisation
University of Sheffield
Duration of Study in the UK
0 years, 8 months, 30 days
Research summary
In recent years, the opportunities for the organisation analysis use and re-use of patient data for purposes beyond their direct individual care has dramatically increased. In large part due to developments in digital technology, the benefits to service providers include scientific advances along with improved clinical treatments and administrative decision-making. At the same time the public have raised ethical and governance concerns about the risks of patient data sharing, including (re-) identification, risks to personal autonomy, and organisational trust. In the light of this situation, the aims of the study, funded by the Wellcome Trust from October 2019 to November 2020, are 1) To improve understanding of the factors influencing people when deciding to give/not give their consent to sharing their patient data for purposes beyond their direct care 2) To engage patients in the production of a set of tools communicating the benefits and risks of data sharing 3) To evaluate the effectiveness of these tools at a number of public events or 'Deliberation Days'. The first of these aims will involve inviting patients and public health professionals to participate in an interview about the benefits and risks of data sharing for public health. The second of these aims will involve inviting patients and health professionals to participate in workshops designed to co-produce information tools on the benefits and risks of patient data sharing. The third of these aims will involve inviting patients, members of the public, and public health professionals to a public event or 'Deliberation Day' where the issues identified will be discussed, and tools evaluated, in a public setting. In sum, the study aims to empower patients to take more informed and effective decisions about how the sharing and linking of patient data can lead to improving public health.
REC name
London - Brighton & Sussex Research Ethics Committee
REC reference
20/LO/0649
Date of REC Opinion
8 Apr 2020
REC opinion
Favourable Opinion