July 2023 Update:
A new data access policy is currently being drafted. Therefore, some of the information here may become outdated. We will provide an update on this as soon as possible.
Written by Kim Rezel, Patient and Public Involvement Lead at Healthcare Quality Improvement Partnership (HQIP). Kim explains HQIP’s ‘Understanding Health Data Access’ project, and what they learned from involving patients and public in the work.
HQIP is responsible for commissioning the largest programme of national clinical audit in the UK—and holds a lot of health data as a result. People can request access to use this data to improve healthcare, whether that’s through research, service improvement, policy making or innovation. Managing these requests is an important part of our work, because we believe health data has the power to help improve health and care for everyone.
But the rules and laws around accessing health data can be hard for data applicants to understand and navigate. And we’re also aware that we often refer to the legal bases for access to data when we’re communicating with patients and the public, but we don’t usually explain what they mean in practice. This means that while people get lots of reassurances that their health data is safe, they don’t get much explanation about the legal safeguards and how they are applied.
What did we do?
We’ve created resources to introduce the rules and laws around access to health data for research and planning. The idea for the project, Understanding Health Data Access (UHDA), came from the shared belief across numerous organisations who are the custodians of health data that better introductory information would help new data applicants to:
- design projects which both protect patient privacy and meet legal requirements
- construct their data applications more clearly, thereby improving their chances of success.
We invited other data custodians such as NHS Digital and Public Health England to work with us on the project so our resources would apply equally to all health data applications.
To give you an idea of what we did, you can watch one of our videos below. It introduces the data application process and explains what a good application would include. And you can access all the resources here.
Who did we involve in this work?
Although our primary audience for the resources is data applicants, we were keen to try and make sure that what we created could be useful to other groups too. When I was invited to be part of the UHDA project team, I recognised the invitation as a strong statement of intent: we wanted to give patient and public representatives the opportunity to influence and benefit from the project.
We set up an expert advisory group which we split into three cohorts:
- those who approve data applications, including experts in data protection and information governance
- those who apply for data, including researchers and health care professionals
- patient and public representatives, including charities and individuals recruited from HDRUK’s Public Involvement Forum and our own Service User Network.
What did we learn from involving patients and the public?
1. Patients have different information needs at different stages of their journey
While our patient and public focus group was already very engaged in the issues around patient data, it was not always easy for them to identify what they might need to know about the mechanisms of accessing health data legally and safely. So there was an obvious difference between what they wanted to know about health data use in general, and what our project was designed to deliver.
There are some areas of concern raised by our focus group that I believe we do address. For example, our resources describe the four lawful bases by which the Duty of Confidentiality can be met; and they set out that applications need to:
- show public benefit
- address the need for transparency about how and what data is used
- be clear about how it impacts patients’ privacy.
Members of our group expressed various other areas of interest, reflecting the fact that people have different information needs depending on their experience. We also heard about specific concerns people had about the security of their data, for example when they are enrolled into a research study.
Overall, the insight we gathered points to huge and exciting potential for the health system to work with patients to map the patient journey and the corresponding information gaps. I hope our resources will provide reassurance at the very least that applying for data is a highly-regulated and meticulous process. Health data is not given away freely and easily.
2. One size doesn’t fit all when it comes to patient representation
A big challenge for those of us in the Patient and Public Involvement (PPI) community is to hear the views of as many different people and communities as possible. Talking to our focus group reinforced for me that a small number of individuals cannot possibly represent the experiences and views of all patients. While some of our group had an in-depth understanding of this topic and I have no doubt will find our resources really informative, others, shaped by their own experiences, want to focus on how the use of data impacts them personally.
Although our campaign doesn’t address the needs of all of our group because they themselves had a broad spectrum of interest, I think that the resources are absolutely going to respond to some patients who might want to understand how the data application process works.
In some cases, we have been able to signpost to existing resources, and we’ve included that signposting feature in the campaign materials for people who visit our website. The focus group helped us to identify that even with all the work UPD and Data Saves Lives have been doing in this area, there are still unmet needs. As part of our project evaluation, we are relaying that intelligence back to our partner organisations in government and in the health research community.
3. Feedback has value even when it’s not directly applicable to the task in hand
In my wider experience, patients can perceive consultation to be lip service or tick-box, especially when they have no idea what their comments or input have led to. We worked very hard on this project to make sure all the feedback we received is used, whether directly influencing the resources or in sharing concerns with other organisations who may be better positioned to respond.
In this way, I hope we have contributed in a meaningful way to demystifying the rules around data access, for the benefit of patients and data applicants alike.
If you’d like to find out more, please get in touch with HQIP by emailing firstname.lastname@example.org.