The data held in a person’s general practitioner’s (GP) patient record, in comparison with a person’s hospital or other health records, is often considered the most extensive source of information about a person's health and is very useful for both individual patient care and secondary purposes. It is used to ensure that a patient’s care team has access to as much information as possible about them to help provide the best care, to pay GPs for the services they provide, and can be used for research and analysis within and outside the NHS.
In recent years, high-profile attempts by NHS England to bring GP data together have been abandoned after being met with pushback from privacy campaigners, parts of the medical profession and some members of the public, such as Care.data and the General Practice Data for Planning and Research (GPDPR) initiative.
There is currently limited in-depth public attitudes research about primary care data specifically. Prior research by healthcare organisations like NHS England have tended to focus on views about specific existing or proposed primary care data initiatives or testing specific models for the use and sharing of GP data. There is also an existing body of research that covers questions relating to views on data sharing, motivations for sharing data, and opting out of data sharing more broadly.
This research will build on existing research by focusing on an in-depth exploration of how people feel about primary care data specifically, how their attitudes about it compare to other health data, and what they think the role of different individuals and organisations should be in accessing, processing and sharing primary care data. Ongoing discussion about the use of GP data presents an opportunity to understand what people think about this topic and how to ensure the system works in a way that engenders public trust.
We are looking for an external supplier to:
- Conduct public attitudes research about how members of the public feel about primary care data
- Undertake workshops on what people already know about primary care data and what information they would like to see in a factual resource about how primary care data is used
- Draft a brief report that sets out the findings of the research
- Draft a 1-2 page factual resource aimed at explaining the use of primary care data to members of the public
More information can be found in the invitation to tender below. The deadline for submitting a proposal is 10:00 on 5th August 2024.
If you have any questions or to register your interest, please contact hello@understandingpatientdata.org.uk.