The BRC has worked with UCLH patients to develop a set of principles on how patient data is used in research.
The principles – now adopted by UCLH – cover the safe use of patient data and transparency about data use in research.
NHS hospital trusts like UCLH generate vast quantities of data in the course of patient care. This includes information like results of blood tests and scans, prescription and treatment information.
This information, together with UCLH’s electronic healthcare record, is an incredible resource for researchers looking at diseases and how to treat them.
UCLH patients and researchers worked as equal partners to co-produce 14 principles that allow vital and rigorous health research to take place, at the same time as protecting and using patient data as the public would expect and wish for.
The principles incorporate UCLH’s existing legal obligations around use of data – but go beyond them.
Elizabeth Lloyd-Dehler, one of the patients who coproduced the principles, said: “We were able to establish our cherished goal of securing the future safety of the hospital’s patients and benefits of research whilst ensuring the continuation of a lifeline, valuable medical progress. Working together as a group allowed opinions, firmly held views, doubts and anxieties to be heard, discussed with intention and transparency and without time constraints.”
Dr Steve Harris, UCLH’s Chief Research Information Officer and UCL Principal Research Fellow, was also part of the coproduction team. He said: “I can’t thank the team enough for this work. The world of data, machine learning and artificial intelligence is moving very quickly. We completely rely on our patients and staff to provide guidance to keep us on the front foot. This gives us the best chance of using these tools to deliver better care, and important science.”
UCLH intentionally took a co-production approach to the development of the principles, so that the principles reflect the wishes and views of patients and the public.
Work by the NIHR UCLH Biomedical Research Centre revealed that patients and the public are often unaware of the care already taken of their data as part of UCLH’s statutory and regulatory obligations. By including these legal obligations in the principles, the principles represent an opportunity for UCLH to articulate and bring together in one place its approach to using data in research.
The principles include UCLH’s commitment to:
- the highest level of transparency about how and why UCLH patient data is being used in research, who has access to the data and results of the research
- prioritising access to patient data for research to improve the health of the public or to reduce health inequalities
- ensuring data used in research does not worsen existing inequalities or exclude relevant communities
- only entering partnerships with external organisations where benefitting the health of the public or reducing health inequalities is the primary purpose of the use of data in research
- ensuring patient involvement in research using data, including taking account of patient wishes when drawing up contracts with external organisations.
Work at UCLH to develop these principles is in line with other initiatives considering how data should be handled in research – for example Cancer Research UK’s data science community.
Read more about how data is kept secure, and consent around use of data in research, on our Data FAQs page.
Image: Adobe Stock / Justlight
