Public views on the use of personal identifiers for linking diabetes and education data for research

A report showcasing the findings of a public and patient workshop with people living with type 1 diabetes to inform the work of ‘The personal cost of health conditions in childhood’ project has been published today. Charlotte Austin of Diabetes UK discusses the importance of engaging the public in this work, and the workshop findings.

Diabetes UK have been supporting a research project which seeks to link education data to diabetes audit data to help better understand the links between the support received in schools and diabetes clinics and subsequent health and educational outcomes. Diabetes UK are supporting this work because we know that diabetes is a condition that goes beyond health measures and affects many aspects of an individual’s day-to-day life.

While ADR UK have provided the financial investment and are supporting the social science data side of this project, Diabetes UK were keen to support engagement with individuals with diabetes. The first opportunity to do this has come fairly early on in the project to help gather the views of young people with type 1 diabetes on the decisions made about using their data.

Linking diabetes and education data: the process

The linkage of diabetes and education data is challenging in many respects. The multidisciplinary nature of the linkage is a technical challenge (because there is no NHS number in the education data), and it is an information governance challenge because it requires the use of patient identifiers – like name and date of birth – to link a person’s health records to their education records.

Approval of the usage of those person identifiers from the Health Research Authority Confidentiality Advisory Group requires (amongst many other stipulations) evidence that patients have been consulted on the plans, and that they are satisfied that the processing is in line with individuals’ expectations (i.e. that there are no ‘surprises’), and that the information provided on the use of their data is clear and accessible. Furthermore, engaging with the public around the use of their data is an important part of maintaining public trust and maximising the benefit of this work.

What did we learn from running the workshop?

When considering what went well and what we will try to do better next time, a few things stick in my mind about the event.

Firstly, the extent to which young people are interested in research, and particularly data research, is inspiring: they are open-minded and understand the difference this research can make (see the video below to hear their views). Second, the way that data is used within health and research isn’t particularly well-communicated to the people from whom the data is collected. This in itself has created further opportunities for involving people with diabetes in developing these communications. And finally, while efforts were made to increase the diversity of those involved, there is still much work to be done to reach people whose voices are not commonly heard within research.

I hope that you enjoy reading the report as much as I enjoyed running the event. If you have any comments or would like to find out more, please get in touch.

To read about the findings of the patient workshop, see the full report.

Find out more about ‘The personal cost of health conditions in childhood’ project.

Hear from participants of the patient and public workshop in the video below.