Tools for Life: Data Sharing and Public Health
A key project in the Information Knowledge and Innovation Management research group.
The Tools for Life project is engaging patients and the public in a dialogue about the benefits and risks of sharing their personal data for purposes beyond their direct care.
By engaging in this dialogue our aim is to enable patients and the public to respond in a more informed way to the benefits and risks that the sharing and linking of personal data can bring to improving the public’s health.
Background and aims
The informed process of deciding to give consent to the sharing of our personal data for purposes beyond our direct care remains a key problem for patients and health professionals alike.
The Tools for Life (TfL): Data Sharing and Public Health project is a Wellcome Trust Public Engagement Project that aims to engage patients, the public, health professionals, researchers and medical charities in a collaboration that seeks to effect change in patient’s perceptions and attitudes towards the sharing of their personal data.
To accomplish this aim, the project will be conducted in a number of phases. Each phase has a different objective.
Phase 1. To improve understanding of the factors that influence patients and the public to decide to consent/not consent to the sharing of their personal data for purposes beyond their direct care.
Phase 2. To involve patients and the public in the development of a set of information tools that can be used to communicate the benefits and risks of sharing personal data for the purposes of public health.
Phase 3. To evaluate and test the effectiveness of the instruments at a series of public events or ‘Deliberation Days’.
The project will accomplish these objectives by:
- Mapping the issues that influence patients and the public when deciding to give consent to the sharing of their personal data for purposes beyond their direct care.
- Involving patients and the public in workshops which develop information tools that can articulate and communicate the value and risks of data sharing to a broader audience.
- Evaluating and testing the effectiveness of these tools for facilitating change in patient and public attitudes towards data sharing at a series of public events or Deliberation Days.
- June 2020
Initial thematic analysis of the qualitative interviews completed. National survey designed and piloted.
- March 2020
c.50 qualitative interviews conducted with members of the public about their views on the benefits and risks of patient data sharing for the purposes of public health.
- November 2019
Welcome Dr Sarah Hargreaves who will be the Research Assistant on the project.
Dr Jonathan Foster, Information School
Tel: 0114-222 2665
Dr Laura Sbaffi, Information School
Tel: 0114-222 2686
Professor Suzanne Mason, School of Health and Related Research
We will be inviting patients, the public, and further groups to participate in our public events and a Deliberation Days. Further information on these and a call for action will follow in due course.
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