In partnership with five Healthwatch organisations across the East of England, the University of Cambridge ran a project to explore what people think of the drive to bring different types of heath data together to inform care, public health and research.
Summary
At present, much of the data relating to people’s health is held separately in different organisations. Joining up data has the potential to directly benefit patient care, meaning that patients do not constantly have to retell the same information to different care providers. Such linked data can also provide a complete picture of the health of a community, which could help improve provision of health and social care services. In addition, this can provide a rich source of information for public health research.
But before joined-up datasets can be developed, people need to be confident that any information that they share is held securely and used appropriately. This project is about engaging the public in a few East of England communities to discuss the following:
- What kind of “data” we are talking about
- How joined-up data can be used to improve health
- Who can share and who can use your data
- What are your expectations and concerns about joined-up data
The project team organised a series of conversations for the public to have their say. Insights from multiple perspectives will make an important contribution to the wider public understanding of how individual data could be used to improve health in the East of England. The results of the project will inform how we talk about data sharing and data linkage. It will also inform how health data should be used in our ongoing and future population health research projects.
Project activity
The project involved focus group discussions across all Populations in Focus areas.
What we found and what this means
Insights from the multiple perspectives represented in the project make an important contribution to the wider public understanding of how individual data could be used to improve health in the East of England. For more insight from our findings, please read our report summary below.
Who was involved?
Principle Investigator
Dr Louise Lafortune, University of Cambridge
Researchers and institutions
- Dr Louise Lafortune, University of Cambridge
- Dr Anna Moore, University of Cambridge
- Dr John Day, HealthWatch Essex
- Mr Andy Yacoub, HealthWatch Suffolk
- Mr Alex Stewart, HealthWatch Norfolk
- Ms Sandie Smith, HealthWatch Cambridgeshire, HealthWatch Peterborough
- Dr Sian Evans, Public Health England
- Professor Carol Brayne (Advisor) University of Cambridge
- Professor Peter Jones (Advisor) University of Cambridge
Funder
UK Innovation and Research (UKRI)
Contact
Dr Louise Lafortune, University of Cambridge,
Email: ll394@medschl.cam.ac.uk
