Request for patients with T1 diabetes to assist research project
- 10 June 2019
- Diabetes News
Patient and Public Involvement in Research
Diabetes UK is willing to help researchers with patient and public involvement in the development of their research by circulating requests to people with diabetes. Please refer to the guidance prepared for researchers to aid better patient and public involvement in research: https://www.diabetes.org.uk/resources-s3/2017-10/0983_PPI%20resource_guidance-document_DL_v5.pdf
Please note that Diabetes UK will not endorse the research highlighted in the request and any interested individuals should contact researchers directly.
Please return your completed form to firstname.lastname@example.org
What is the opportunity about?
To seek the views of people with type 1 diabetes (T1D) around issues surrounding the release and use of data from NHS data systems for research purposes.
We plan to request data on diabetes complications through NHS data systems (National diabetes audit, NHS digital) for young adults with T1D, who were previously part of longitudinal studies during their childhood and adolescence. It is a large cohort of around 12,000 people, who gave their consent to provide blood, urine samples and collection of their clinical data for the study of diabetes and its complications. We also obtained their consent to keep their contact details, GP information, NHS numbers and track their progress through NHS systems. However, due to changes over time in the structure and complexity of NHS data systems, the original consent does not cover the data linkage we are planning to do. Re-consenting those 12,000 people would be very difficult, given that they completed the studies many years ago and many of them have likely changed their addresses. When we re-contacted those study participants few years ago by sending a questionnaire about complications, we received a response by only 30% of them.
Therefore, to access data from the NHS systems we will make use of the so-called ‘section 251 of the NHS Act 2006’, which is a way of obtaining data without obtaining further consent.
We would like to discuss our plan with PPI representative to understand their views on how acceptable/feasible that could be.
What type of people would you need?
People with type 1 diabetes
In what region would you like to approach the people with diabetes?
We would like to approach people with diabetes nationally.
How long is the opportunity for?
1-2 hours to review the document outlining the project and provide written comments
What would their role be and what will they need to do? e.g. be part of an advisory panel, comment on documents, take part in a focus group
1. Comment on project
2. Focus groups, if thought appropriate
Deadline for responding and contact details of the researcher
University of Cambridge
Tel: 01223 762944