Public befriend South West Secure Data Environment
An ex-bank worker and other members of the public are helping to run an innovative regional data project promising to enable healthcare research that’s faster, fairer and safer.
The South West Secure Data Environment (SDE) is a secure data and research analysis platform with the potential to enable ground-breaking projects that will improve the lives of people across the region and beyond.
Fourteen members of the public are part of the South West SDE. These ‘Digital Critical Friends’, as they’re known, are trained in digital and data approaches in healthcare and help ensure the SDE is working in the public interest. The friends straddle the SDE’s workstreams, and some sit on its management and leadership board.
Mina Tanna has been a friend of the South West SDE since its conception. Mina began her career in biomedical research at the University of Bristol in the 1970s before moving into banking. After retiring aged 60 and looking for part-time activity, Mina was introduced to public participation in medical research by a friend.
Mina explains:
“When I heard about this programme I had to be part of it. It gave me an opportunity to get back into research and to make a difference in the wider community. Coming from an ethnic background, I could bring a cultural perspective to the Patient and Public Involvement and Engagement work.”
Mina’s experience in data quality, programming, data warehousing, and process design that was essential in banking is now proving invaluable as a friend of the SDE.
“I understand where things can go wrong and always point them out. For example, trying to merge and curate data from various systems is a huge challenge. I suggested end-to-end workflow diagrams and work has since started on this.”
On her journey to becoming a Digital Critical Friend, Mina and her fellow peers underwent training sessions and have been integrated into SDE planning and processes.
Mina explains:
“I have been involved in so many activities; in the strategic documentation, workshops with wider public, being part of the recruitment and mentoring of new digital critical friends, audit, and an NHS England visit, to name just a few. Recently I was invited to be on the panel for recruitment of a technical lead and consultants.”
For Mina, the experience has been positive. She says:
“This is the most transparent and open programme I’ve been involved in as a public contributor. We are invited to leadership and management meetings, and no question is considered stupid. At every meeting, they specifically ask for our opinion. We are listened to, and our suggestions are respected and taken seriously. I feel privileged to be involved and feel that I’m making a difference.”
Not only has Mina enjoyed the introduction to new technology in her role, but she has enjoyed the mental challenge, too:
“Doing this work keeps my mind active and talking about my involvement with this programme is one of my favourite topics. My friends and family have all noticed the difference in me. Being part of this team is one of the best parts of my retirement.”
Health and care records, when brought together at a regional level, can provide vital information for new research. SDEs give trusted researchers secure access to depersonalised NHS and local authority data.
NHS England has developed its own national Secure Data Environment and is supporting regions to set up their own local platforms, such as the South West’s. The South West SDE is hosted by Bristol, North Somerset and South Gloucestershire (BNSSG) Integrated Care Board, and brings together partners from across the region, including Health Innovation South West and Health Innovation West of England, NHS England – South West, hospital trusts and primary care, local authorities, universities, and National Institute for Health and Care Research (NIHR) groups.
In addition to members of the public being embedded in all decision-making boards, the SDE is engaging with local communities in the South West through workshops and events, to understand how we can ensure the SDE processes are designed to prioritise public benefit.