What do people think about using data to improve their health?
Background
We worked with the University of Cambridge and local Healthwatch across the East of England to explore attitudes towards using and bringing together different types of health data to inform public health, care and research.
Most data relating to people's health is held separately in different organisations. Joining up this data has the potential to benefit patient care and provide a better picture of the health of a community, which could improve the provision of health and social care services, and the health of the population.
However, before joined-up data sets can be developed, people need to be confident that any information that they share is held securely and used appropriately.
*What do we mean by Population Health data? Population health data refers to the health of whole populations or groups within a population.
What we did
Using virtual focus groups and one to one interviews, we discussed the following topics with the public:
- What kind of "data" are we talking about
- How joined-up data can be used to improve health
- Who can share and who can use our data
- What are the expectations and concerns about joined-up data
What we found
- Sharing data for direct patient care was seen as essential, as long as security, confidentiality and transparency are upheld
- Participants saw the value in data being shared across health and social care services for continuity of care and to ensure healthcare professionals have the information they need in a timely manner
- Strong concerns were raised around who has access to data, what data is used for, and the implications this has for privacy and consent. Most concerns stemmed from a lack of communication and transparency.
- Participants were apprehensive about the idea of sharing health data to support public health and research. This was due to concerns about the security of their data and lack of knowledge around how the data will be used.
- There is a need for more education and information about the risks and benefits of sharing data for public health and research purposes.
- Participants felt strongly about the need to understand how different groups of vulnerable people are impacted by issues in data sharing, particularly when they can't give consent or understand how their data is being used.
What happens next?
Insights from this research 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, and will inform approaches to using health data for population health management.
What is the National Institute of Health and Care Research (NIHR) Applied Research Collaboration East of England?
The NIHR Applied Research Collaboration East of England supports applied health and care research that responds to, and meets, the needs of local populations and local health and care systems.
Further information on the role and activity across of the NIHR Applied Research Collaboration East of England is available on their website.
