We hosted a Patient and Public Involvement and Engagement (PPIE) online event on 30 October 2023, with over 20 participants joining from across the UK. As part of our commitment to patients and the Health Research Authority, we continuously seek feedback from patients and the public to help us improve our services.
The event provided us with the opportunity to explore patient views and concerns about research outputs, and to help inform our patient and public health research.
Our session covered an introduction to CPRD and our new Trusted Research Environment (TRE), also known as Secure Data Environments (SDE) or Data Safe Havens, which are highly secure computing environments that provide remote access to data for bona fide researchers to use for approved public health research.
An 'airlock' feature will be implemented to allow for checking of any outputs from the TRE before they are made available to researchers. The patient consultation was on how Safe Output checks could be undertaken to ensure that any research results taken out of the TRE are non-identifiable and protect patient privacy.
What we heard at the workshop
- There are currently 8100 GP practices in the UK, with close to a third of these contributing data to CPRD. Participants mentioned the importance of the GPs contributing patient data to CPRD being representative of the UK population, to drive clinical research that can benefit patients in the UK and to improve population health.
- Following small group discussions on different approaches to output checking, patients agreed that our ‘airlock’ should use a combination of automated and audit-based manual checking by human experts.
- The advantages of applying technology to automate checks were discussed, and included cost savings, greater efficiencies, and delivering more consistent and timely output. This potentially enables researchers to complete public health research studies more quickly and cost-effectively. Participants were reassured that human experts in CPRD would set the parameters of the automated checks.
- Given the variety of research CPRD supports, participants understood that there will be situations where manual checks of research outputs will be more appropriate, and that there will be a time and resource implication, for researchers and CPRD, in reviewing these.
- With this combined automated and manual output checking approach, participants emphasized the importance of continual review and internal audit to refine the automated checks in light of researcher needs, and to support the assessment of performance against set quality standards.
- The national move to TRE-based working is new for CPRD and for our researchers, and participants highlighted the need for training for researchers on TRE based-working, including on safe outputs. There was discussion on how training is likely to form part of future TRE accreditation, and CPRD provided reassurance that we will work to industry standards once these are finalised.
- Participants raised several questions on data security and protecting privacy, highlighting the importance of CPRD maintaining patient trust. We fed back to participants that CPRD is reliant on Health Research Authority and Research Ethics support and meets NHS data security standards. This will not change when CPRD moves to the TRE, and by adhering to the Five Safes framework, the CPRD TRE will keep patient data safe and secure.
Further information on patient involvement
We continue to put patients first at the heart of our decision making. If patients wish to participate in future events, please email enquiries@cprd.com
Patients who would like more information on approved studies can go to www.cprd.com/public or email enquiries@cprd.com if there are questions about specific studies.
Also patients can use the Yellow Card scheme to report suspected side effects of medicines, vaccines, e-cigarettes and medical devices by clicking www.mhra.gov.uk/yellowcard