Patient, Public, and Professional Involvement and Engagement
It’s essential that OpenSAFELY is trusted by everyone. That includes patients and the public, funders and policymakers. It also includes professional bodies, privacy campaigners and other interest-holders. Our goal is to be provably trustworthy, earning our trust through actions, not meetings. As part of this, we actively involve and engage patients and the public in OpenSAFELY in a number of ways.
Patient and Public Involvement and Engagement (PPIE) refers to the active involvement of patients and the public in the design, development, and conduct of research and research infrastructure, as well as the communication and dissemination of research findings and the work we do.
Meaningful and recurring PPIE really matters. We have active public involvement in the governance and design of OpenSAFELY via our OpenSAFELY Digital Critical Friends group.
- Find out more about our OpenSAFELY Digital Critical Friends group.
Involvement and engagement with patients and the public has provided considerable insights into the day-to-day running and development of OpenSAFELY.
It’s also helped us with the process of PPIE itself, enabling us to better spot the enablers and barriers to conducting high-quality involvement and engagement activities around data-intensive research when the focus is not on any specific research, or research question, but a technology platform.
Online workshops
At the end of 2024 and the start of 2025, we ran a series of online workshops with over 90 members of the public to hear their views about what OpenSAFELY should look like beyond the COVID-19 pandemic. The workshops were co-designed with the OpenSAFELY Digital Critical Friends group. These workshops also helped towards ensuring OpenSAFELY’s transparency; vital for building trust.
Citizens Juries considered OpenSAFELY a good idea
In 2021, the NHS, the National Institute for Health and Care Research (NIHR), and the National Data Guardian commissioned a series of Citizens’ Juries to review a number of data-sharing initiatives that were introduced during the COVID-19 pandemic.
A Citizens Jury is a small group of people who are brought together to hear evidence from expert witnesses, discuss and pass comment on what could be controversial aspects of public policy. Find out more about Citizens Juries.
OpenSAFELY was one of the initiatives selected for the Citizens Juries. And of all the initiatives reviewed, OpenSAFELY received the greatest support, with 77% of jurors very much in support.
For example, most jurors considered OpenSAFELY to be the most transparent, trustworthy and secure of the sharing initiatives.
When asked at the end of the jury process whether OpenSAFELY should continue after COVID-19, 87% of jurors said yes.
We think these results speak for themselves: after being presented with detailed evidence from various sources, OpenSAFELY earned approval across the board.
→ Read more about the Citizens Juries in this report.
Support from the professional community
As well as involving the public, from the outset we have sought advice and input from technical experts, privacy specialists, as well as those well-versed in public opinion on the use of health data.
OpenSAFELY has received ongoing support from the professional community, including from the British Medical Association, the Royal College of General Practitioners, and NHS England’s Advisory Group for Data (AGD).
This is not because of lobbying: it’s because we have involved them from the beginning , sharing our plans, listening to their concerns, and then – critically – building practical and technical solutions to manage any concerns they raised.
Similarly, privacy campaigners medConfidential – who are often loudly critical of projects accessing citizens’ data – have been strongly, publicly and actively supportive of OpenSAFELY. Again, this is not because of lobbying: they give detailed technical feedback, and we have modified the way our platform works in response.
Lastly, we maintain active partnerships with all of our wider interest-holders including organisations’ data controllers, funders, partner organisations, users, patient representatives, privacy campaigners, the BMA and RCGP, not least in our formal governance.
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