Patient and Public Engagement
Patient and public involvement and engagement
PRANA has actively involved patients, patients family and members of the public in establishing the PRANA database and its policies. This has been achieved as an integrated part of the extensive NHS England Secure Data Environment Patient and Public Engagement programme.
The perspectives and involvement of patients, service users and members of the public is central to the development of the Wessex Secure Data Environment (Wessex SDE) and PRANA. Their active involvement in the co-creation of the project is ongoing. This is supported by a vibrant translational research and engagement professional community across Wessex.
We recognise that the project is happening in a broader context, with 11 secure data environments across England as part of the NHS England Data for Research & Development programme. There are a wealth of research insights and patient, service user, and public involvement activities associated with these and similar projects that we draw on to inform our approach. There are also research and engagement programmes planned nationally and by other regional SDEs. At the same time, we recognise that the Wessex SDE and PRANA requires its own mandate and are actively working with our communities to co-create the database and its policies with them.
Engagement activity
PRANA is an exemplar project within the Wessex SDE. The PPIE work that the Wessex SDE has undertaken has explicitly included discussion of the use of patient identifiable information without consent and explicitly used PRANA as an example case study. Our work has contacted over 5,000 members of the general public.
The PPIE work has also approached seldom heard groups, targeting the NHS England’s Core20PLUS5 and Joint Strategic Needs Assessment (JSNA) target categories. Between October 2023 and December 2024, 15 community groups and VCSE forums were visited, with 260 people receiving a talk and approximately 90 engaging in post-talk discussions.
From February to May 2026 the Wessex SDE completed follow up engagement with a total of 108 people from 12 diverse, seldom-heard community groups took part.
Our seldom heard groups engagement programme has directly tested whether the groups found it acceptable that their identifiable patient information (with the safeguards we have in place) will be used to link the data for use within the SDE. The PRANA programme was utilised as a case study for this engagement.
Findings also confirmed that while the people and communities broadly support the aims of sharing data for research, this support is conditional on transparency, meaningful consent, strong governance, inclusive practices, and clear evidence of public benefit. Continued engagement and demonstrable responsiveness to community input are essential to building and sustaining long-term public trust.
Our seldom-heard groups engagement was tailored to ensure that the complex issues were explained simply and straightforwardly to public participants, who may have lower levels of data literacy and confidence.
The discussion included clear reference to the fact that patient information will be transferred to the SDE from a number of sources where it will be linked, but that confidential patient information will be kept private from research users of the SDE platform. We have explained that privacy will be ensured through de-identification of data, and discussed the processes by which this will be achieved. We have also discussed the other ‘Five Safes’ that will be applied to data processing by the SDE.
On going engagement
PRANA continues to work with patients, people with lived experience of serious illness or injury, and members of the public to shape how the registry develops.
This includes working with the Wessex SDE’s Digital Critical Friends, who provide independent public perspectives on data use, governance and research.
PRANA is also developing its own public Advisors Council to bring together people with lived experience of serious injury and emergency care. The Council will help shape the programme’s priorities, communications and future development.