In partnership with five Healthwatch organisations across the East of England, the University of Cambridge is running 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.
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.
The project is due to report in June 2021. A high-level summary and a detailed report of the findings will be made available to all our collaborators and participants.
The project involved focus group discussions across all PiF areas as well as one on one phone interviews.
Who is involved?
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
UK Innovation and Research (UKRI)