OpenSAFELY and the Co-produced Development of the Digital Critical Friend (DCF) Public Advisory Group model

COVID-19 undoubtedly brought about a rapid evolution in health research, prompting new strategies and the development of unprecedented technologies. One of the prominent initiatives that rose to the fore was OpenSAFELY, a secure, transparent, open-source (meaning original source code is made freely available) software platform designed to analyse patient electronic health records without giving researchers access to patient data, but rather to send analytical code to the patient data sources and receive back non-personally disclosive results.. OpenSAEFLY has been used for COVID-19 related research on primary care data held by your GP. Working with NHS England and supported by globally recognised organisations like Wellcome Trust, UK Research and Innovation (UKRI), Medical Research Council (MRC), the National Institute for Health Research (NIHR), OpenSAFELY has earned public trust, and was endorsed by a set of three online National Citizens Juries in 2021. We wrote a blog about this at the time.

One principle underpinning our approach to public involvement is that it is recurring. That it is responsive to the fact that opinions, beliefs, and values are not static in either time nor space, and vary significantly depending on context and changes in experience. So, what is acceptable today (or back in 2021) might not be in six months or four years’ time. From the National Citizens Juries, we learned that OpenSAFELY is strongly supported by patient advocates and privacy groups - however this support is not fixed or guaranteed and is conditional on recurring and continued public involvement and engagement.

The Bennett Institute recognised the importance of meaningful public engagement and active public involvement in large-scale data-sharing projects. This realisation was the seed that sprouted into the Digital Critical Friends (DCF) group, an innovative approach to public involvement, developed by Andy Gibson and John Kellas (initiated in 2018 with the Bristol Health Partners’ progressive work in community engagement). Jess Morley Head of Policy at the Bennett Institute, at the time, helped refine an applied model for the DCF programme and provided the interface with the Bennett Institute and OpenSAFELY operations.

A comprehensive training programme, designed to empower DCF group members with the knowledge required to participate effectively in project discussions, was created. The recruitment process was designed to provide diverse representation and a multitude of perspectives. This rigorous preparation led to the DCF members being both informed and active contributors in their first workshop held in April 2022.

Following this, the DCF group was integrated into OpenSAFELY governance, offering invaluable inputs in project discussions, raising pertinent questions, and providing informed critique. The areas of contribution were significant, including operational and strategic topics such as the life of OpenSAEFLY beyond COVID-19 focused research (more on this in a future blog post!), communications materials co-design, NHS consultation processes, wider public workshop co-design and delivery and more. Morley, Gibson and Kellas expertly facilitated the work of the DCF group, ensuring their progress was continuously reported to the OpenSAFELY Oversight Group.

The journey of the DCF group, from conception to becoming foundational for OpenSAFELY, is a testament to the power of effective public involvement in digital health. As we move forward, the experience of embedding the DCF group offers vital lessons about fostering public involvement and engagement in digital health and health data intensive research. This initiative signifies a significant step in ensuring that public perspectives not only inform, but also shape the trajectory of health research.

We will soon have a space on our website dedicated to Public Involvement where you will be able to find out more about our Digital Critical Friends and Critical Friend Network, impact, resources, and opportunities to share your thoughts. Watch this space!