The personal cost of health conditions in childhood: Engaging the public

‘The personal cost of health conditions in childhood’ project team is working with Diabetes UK to generate robust feedback on the work from families of children with diabetes and the wider public.

The findings of the engagement will help to inform meetings with the Confidentiality Advisory Group (CAG) at the Human Research Authority (HRA), who are responsible for approving the research database framework.

Since the project is using sensitive data and complex methods to protect privacy, the team are working with Dr Alex Bailey at the Medical Research Council’s Regulatory Support Centre to deliver training for the patient groups involved, to ensure that the legal and practical implications of the information governance framework are well understood by those being engaged with.

Type 1 diabetes and education: Patient workshop, April 2021

The first of the project’s patient engagement workshops was held in April 2021 in collaboration with Diabetes UK, to seek feedback on the proposed data processes from people living with type 1 diabetes. The workshop gathered views on the principle of sharing real world personal identifiers (NHS numbers, names, dates of birth) without consent for the creation of de-identified linkage fields for data linkage.

Attendees were able to discuss the issues surrounding the proposed data flows, including how their privacy would be safeguarded, what information would be provided to data subjects by data providers and the project, and options for opting-out of different aspects of the data and research.

Read the full workshop report.

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