Building public trust in using health data for research is one of the key pillars of PIONEER: the Health Data Research Hub for Acute Care.

The programme exists to make health data more accessible to researchers to enable new treatments, improve diagnoses and develop better services. All of this is done safely and securely, keeping front of mind that health data belongs to patients and members of the public and must be treated with care and respect.

At PIONEER, we believe strongly in the importance of involving members of the public in our decision-making process. It is vital that the public are supportive of decisions about which research projects we share data with and what data is needed to carry out research. By taking a transparent approach and involving public contributors throughout, we can help build public trust in health data research.

How were patients and the public involved?

Patients and the public have been involved right from the outset with PIONEER. We conducted some early work surveying patients, staff and visitors of the Queen Elizabeth hospital in Birmingham at the start of 2020. We followed up with some workshops to dig deeper into the attitudes towards health data research revealed by the survey. From these discussion workshops we developed some principles that have guided the way that PIONEER works ever since.

One of these principles was that decision making around data sharing should have public oversight. As such, we have set up our Data Trust Committee (DTC), who review every single data request that comes through PIONEER.

Learning as we go – recruitment and managing data access requests

We recruited in stages to ensure we have a well-rounded group that reflect the diverse population across Birmingham and gel together in terms of skills and expertise. We weren’t shy in reaching out to specific ethnicities or groups such as the LGBTQ+ community, whose voices we knew we wanted to include. Our eclectic group brings together people who may not otherwise have had the opportunity to work together, either in their professional lives or to cross paths in their communities. It’s exciting to see this group work as a team and we’re proud of how everyone interacts, listening and considering one another’s views with respect.

We soon learned that demand for data can be variable, and when the need was higher, there was considerable pressure on committee members to be available. We have therefore continued to recruit and expand the committee over the year to give members more flexibility. Public contributors have supported us throughout the recruitment process to help us ensure we have the right members for our group.

The Data Trust Committee is now made up of 12 public contributors, who receive support from professional advisers on data access in fortnightly meetings. Only public contributors have voting rights, an 80% majority approval is required to move forwards with a request. To ensure committee members can be confident enough to make recommendations, we have developed a comprehensive training and induction programme, which includes webinars, question and answer sessions, videos and reading for independent learning and shadowing opportunities. We have received great feedback from new members who are very appreciative of the time we spend getting them up to speed.

“I have been a member of the committee for a few months now. I found the recruitment process very fair, and the induction programme was excellent; everything was explained really well, and we were encouraged to ask questions to ensure that we understood the processes used by the committee, and what is our role.

The meetings are well conducted, and we are given plenty of time to prepare for them; the documentation is sent to us in good time. The discussions at the meetings are very good and meaningful, and we are always listened to with respect. I feel that I am valued as a member, and that the views of patients and the public are being heard and acted upon.” – Sandra, Public contributor at PIONEER

What did patients and the public tell us?

The Data Trust Committee worked together to decide how many members of the public should be in the group, how many were needed in attendance for voting to take place and what percentage majority was required to put something through as an approval. The committee’s way of working has been shaped by the members themselves, giving the PIONEER team confidence that the group is robust enough to give a helpful indication of public opinion.

Over time we have seen trends in the topics discussed by the committee;

  • We know that the group feel less comfortable when data has to be transferred and always have more questions about this. As such we are improving our request forms to ensure we always get the information the committee need, in a way in which they can understand it, in order to consider this aspect.
  • The potential for identification is a real concern and a regular topic of conversation. It’s important to be clear about group sizes and plans regarding grouping data together to make identification less likely, for example age groups rather than years and never dates of birth.
  • The committee regularly scrutinise the requestors plans for their own patient and public involvement and engagement work and, after finding this section lacking on many occasions, the committee have worked with us to develop support so that requestors can put better plans in place for involving members of the public prior to and once the data has been shared.

What was the impact of involving patients and the public?

Before a request even reaches our Data Trust Committee, it will be reviewed for due diligence and to check we have the data to share. The purpose of the Data Trust Committee is to provide guidance on whether members of the public feel there is potential for public benefit to the research. This is essential as the PIONEER team cannot fairly speak on behalf of the public, because their interests are too close to the programme. The Data Trust Committee have made recommendations on thirty data access requests from their inception in 2020 to October 2021. Of these 30 requests, 20 requests were approved immediately by the Committee, two were rejected, three were given conditional approval and five were only approved after amends have been implemented. Their input is vital to ensuring we support work that has patient and public interests at heart.

 “The transparency and rigour of the Data Trust Committee’s processes in decision making around data sharing, together with its regard for patient voices and views, cannot be beaten. It is a privilege and incredibly meaningful to be involved in its work.” – Sarah, Public contributor at PIONEER

The impact of public involvement on the studies that we share data with is two-fold. It means we are selecting appropriate studies and the process ensures that researchers need to carefully think through the benefits of their research and consider how they explain this appropriately in a simple, public-friendly way. There is also a ripple effect, ensuring those requestors think about how they approach public involvement in their own work. The expectations from our committee and the support and guidance we provide enables researchers to keep the public at the core of what they are working on and why.

To find out more about PIONEER, please visit their website https://www.pioneerdatahub.co.uk/

If you have any questions, you can get in touch with Alice (Public Involvement and Engagement Officer, HDR UK) at Alice.Dowden@hdruk.ac.uk.