The benefits to patients and the public of using patient data can be significant, provided it is done securely, transparently and, wherever possible, with patient choice.
Elizabeth Bohm Head of Data and AI Policy, Health Research Authority
Why share GP data?
NHS Digital (NHSD) has paused the roll-out of the General Practice Data for Planning and Research (GPDPR) to listen to patients, health care professionals and the public. It has done this following concerns raised about how the data will be used and whether the public has sufficient information. We think this pause is the right thing to do and shows the organisation's commitment to maintaining public trust.
At the HRA, our core purpose is to protect and promote the interests of patients and the public in health and social care research. Because of our role, we think that there are some core principles about using patient data:
- Patients and the public should be involved in decisions about the design and development of research using patient data.
- Wherever possible, patients should have a choice about how their data is used for research. Where that choice is not possible, the research needs to be in the public interest.
- The public should be able to easily find out about how patient data is used for research, and what the results of that research are.
- Patient data must be handled securely.
What data is being used and how will it be handled?
The data that will be used is from the records that GPs have of the medical care they give to patients. Names and addresses are not collected and any other information that could identify an individual is replaced with codes by de-identification software before it is transferred to NHSD – this process is also known as pseudo-anonymisation.
A large data set like this provides a view across the health and care service. Planning and research can then include all groups that are using services, which makes the data more representative of the population. The GPDPR is also a more secure way to transfer the data and eases the burden on GPs to respond to requests for data.
Why is this data important for research?
Research helps us improve services and treatments in health and care, and access to health data is an important part of this. For example, improving treatment and diagnosis of blood cancer and allowing doctors to tailor their approach by linking data held by NHS Digital sets with other datasets and augmenting it with patient surveys to create a comprehensive dataset on blood cancer.
How is patient data protected?
Once the data is included in the dataset it cannot be accessed by just anyone. Researchers or organisations that want to use the data must apply for access. These applications are scrutinised to make sure that access to the data is legal and appropriate, that the minimum amount of data required is used and the organisation looking at the data has the infrastructure and processes to keep the data safe. NHSD also has an independent committee, the Independent Group Advising (NHS Digital) on the Release of Data (IGARD). This committee has both expert and lay members and provides independent review of applications in line with their terms of reference. .
The HRA also supports safeguards that protect patients and the public. Research requires ethical review from one of our Research Ethics Committees, who are independent groups of experts and members of the public. Our Confidentiality Advisory Group makes recommendations on projects activities that require identifiable patient information where it is not always practical to obtain consent. It reviews the benefit to the health and care service and will only support applications when there is no other option but to use identifiable data.
Over the next few months NHSD will be talking more about the GPDPR and the role data plays in planning and research. We know that when asked, people want their data to be used for planning and research in health and social care provided it is done transparently, safely and in the public interest. As people decide whether to include their health data we hope that they will review the safeguards in place, assess for themselves whether they are sufficient and let us know if things are not transparent enough. We want to make sure high-quality research brings us all better health and welcome your helping us get there.