Our latest report shows that the relationship between patients and their data is deeply personal. Patients recognise that the potential for data use to improve care is huge. Our research showed widespread support for realising this potential - if patients’ concerns are acknowledged and addressed.

A data pact

The idea for a data pact emerged from the Government’s Data Saves Lives strategy, which sets out plans to harness the potential of data use in the health and care system. The pact is intended to improve public confidence in how data are used in the health and care system.

The Department of Health and Social Care (DHSC) and NHS England supported the Patients Association to give patients the chance to share their views on the development of a data pact.

During the research we examined attitudes towards data sharing generally, as well as specific uses of data, before focusing on the implications and expectations of a data pact.

What we heard

Transparency, honesty, a flow of information to and from the patient, and ensuring that the system works as described will be at the heart of the relationship between patients, their data, and the health and care system.

There was scepticism among patients about these issues as things stand, but this did not mean patients were against the use of their data. Our research found that while a data pact would not be solution to these issues, it could be first step in addressing this scepticism. This is particularly true among patients with little to no knowledge of how the system works.

Imperfect system

To achieve this, a data pact will need to acknowledge data use is an imperfect system, an ongoing journey, and that mistakes will be made. The patients we spoke to had experienced some issues with how data is used in the health and care system.  A data pact will need to make meaningful commitments to patients, including how the system is underpinned by existing legislation.

It should also be clear where patients can go if they have concerns related to their data and how the data pact is monitored and overseen. Our research also highlighted longer term issues, such as improving the quality of recorded data and how well data are  shared within the health and care system. You can read NHS England's response to our findings and how they are being taken forward on its website.

To learn more about our research and download the report, Developing a data pact: the relationship between the public, their data, and the health and care system. 

How you can support the findings of this report:

Use the social media buttons below to share the report and patients’ experiences.
If how your data are used is an important issue to you, ask the services involved in your care how they use your data, or check the NHS App to see the information it contains on data use. 
Keep up to date with our work on data and other opportunities to participate in research projects by joining the Patients Association – it’s free and easy to join. Follow this link to learn about the benefits of membership.