Tools for Life: Data Sharing and Public Health
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:
October 2019: We will shortly be recruiting a Research Assistant to work on the Tools for Life project. More details to follow soon.
Dr Jonathan Foster, Information School (Principal Investigator)
Dr Laura Sbaffi, Information School (Co-Investigator)
Prof Suzanne Mason, School of Health and Related Research (Co-Investigator)
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.
Publications related to the project will be listed here when available.