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.

About

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.

Project stages

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’.

Project outcomes

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.
News

October 2019: We will shortly be recruiting a Research Assistant to work on the Tools for Life project. More details to follow soon.

Project Team

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)

Funders
Events

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

Publications related to the project will be listed here when available.

Contacts
Dr Jonathan Foster
(Principal Investigator)
Dr Laura Sbaffi
(Co-Investigator)
Prof Suzanne Mason (Co-Investigator)
University of Sheffield
Information School
Regent Court,
211 Portobello Street,
Sheffield,
S1 4GD
University of Sheffield
Information School
Regent Court,
211 Portobello Street,
Sheffield,
S1 4GD
Universityof Sheffield
ScHARR
Regent Court,
211 Portobello Street,
Sheffield,
S1 4GD
E-mail: j.j.foster@sheffield.ac.uk
Tel: 0114-222 2665
E-mail: l.sbaffi@sheffield.ac.uk
Tel: 0114-222 2686
E-mail: s.mason@sheffield.ac.uk
Tel:0114-222 0694