Kidney Research UK recognises the importance of careful and acceptable use of electronic healthcare records to enable and support research designed to benefit patients living with kidney disease, those likely to be affected in future and the wider NHS. This approach to research fits in with our overall strategic objective of a future free from kidney disease.
Research for the future
We are committed to enabling and supporting carefully selected research projects using electronic healthcare records in instances where it fits with our research strategy, is designed to offer clear patient benefit, is demonstrably acceptable for the patient group whose information is used and meets stringent standards of data security and privacy.
Use of electronic healthcare records for medical research is an important approach to driving medical innovation, and a rapidly evolving area. We actively review our policies and partnerships in this area to ensure the highest standards of safety and acceptability.
Commitment to acceptable, safe research
We review all proposed projects and partnerships involving use of patient medical data using our stringent review process, drawing on specialised, independent advice as needed. Patients are a key part of our research approval process, including proposals using healthcare data. We will not support – financially or otherwise – any research that does not adhere to the highest standards of data privacy and security and/or does not have significant patient input and approval. For our healthcare data initiatives, we apply the 5 safes standard.
As a member of the AMRC, we endorse and work to the Framework for understanding ethical principles for digital health.
Openness and transparency
We believe in open and transparent use of healthcare data and promote the use of the Kidney Research Data Portal. We are committed to sharing all findings from supported studies.
Reviewed: July 2024