Introduction
Clinical Practice Research Datalink’s (CPRD) annual Patient and Public Involvement and Engagement (PPIE) event was held on 17th October 2024. Patients were invited via the Patient Participation Groups at all CPRD practices. A record attendance of 46 patients attended: over twice the number who attended in 2023.
CPRD, as part of the Medicines and Healthcare products Regulatory Agency (MHRA), is committed to putting patients at the heart of what we do. Many interesting discussion points were covered on the day. Over 80% of patients who provided feedback felt they had the opportunity to contribute views, answering either “agree” or “strongly agree” in our anonymous survey.
Aims
The attendees were drawn from Patient Participation Groups (PPGs) associated with the 2,400 GP practices contributing to CPRD. They may not have been aware their practice has been participating, and it is important that patients are informed about how their data benefits public health.
This year, CPRD discussed the legal basis for our work, the use confidential patient information outside of the direct care team without patient consent, and the safeguards CPRD has in place to protect patient data. You can read more on this on the Data Protection Notice on the CPRD website. Patient views were sought via the meeting chat, polls, and written questions after the event too.
One aim of the meeting was to test our language on why we were adopting the term ‘pseudonymised’ instead of ‘de-identified’ to describe the data received by CPRD, going forwards. While this is a complex topic, even for professionals, it is CPRD’s duty to explain to patients what we do with patient data.
We were grateful for the opportunity to test our messaging with the public. We took on board the feedback and revised our public messaging for greater clarity.
Feedback from patients showed that we needed to draft our public communications in a non-technical way that did not assume familiarity with the topic.
CPRD also outlined why and how we undertake data linkage of CPRD data to other external, healthcare datasets, to further improve patient outcomes through more comprehensive public health research while still maintaining patient confidentiality.
The meeting was conducted online via Microsoft Teams and allowed users to ask questions in the chat. Many questions came through the chat, as well as via email afterwards.
User Feedback
Public feedback was collected via a SurveyOptics online poll from those who attended. User feedback collected included:
“The speakers were very clear and explained very well”
“Informative but kept at a lay person’s level”
“Explanations were clear and jargon free”
“Clear descriptions of how data is collected and used to improve public health”
“Specifically encouraged to ask questions”
“Time was given to share problems and give comments”
Users also provided feedback on what we can improve upon for subsequent events.
- At the next event, CPRD will provide user guides on better using Teams for meetings
- How the meeting could be made more accessible for those with additional needs. None had been reported prior to the event. CPRD asked patients prior to the event if there were issues to ensure we could make the event accessible.
- Some users reported they found language too technical, boring, and challenging for the lay person. This was in the section discussing the use of confidential patient information without consent. However, they recognised that this was unavoidable for some of the discussion material.
CPRD greatly appreciates the time and effort provided by those patients who attended, contributing to a discussion that covered several technical subjects. Time constraints meant that we couldn’t answer all questions on the day. Those questions covered a variety of areas and will help inform future considerations on the guidance we provide on our website.
Follow up
In addition to this material being published on the CPRD website, slides were also emailed to attendees. CPRD’s approach to patient and public communications will continue to be informed by the patient feedback provided.
We remain keen to meet with practice Patient Participation Groups. If you’d like us to come to your practice, please email us at gpnetwork@mhra.gov.uk