Local people share views on NHS data for research
Volunteers across Hampshire are supporting the use of NHS data for research.
The Wessex Secure Data Environment (SDE) will use NHS data to improve health outcomes and save lives.
There are 19 members of the public working with University Hospital Southampton in its development.
They include John Stainton, a 63-year-old from Eastleigh, Sandra Hall, a 63-year-old mum of two from Fareham and Nyaradzai Martin Shoko, a 48-year-old from Bassett, Southampton.
Those selected will act as ‘Digital Critical Friends’. The voluntary role will ensure the views of people in Wessex are embedded in the online platform’s governance and decision-making.
John, Sandra and Nyaradzai are now urging everyone in the county to get involved.
Digital Critical Friends
The idea of the Wessex SDE is to enable large amounts of de-identified NHS patient data to be safely stored, linked together and made accessible to researchers.
They won’t ever see confidential patient information. However, they will get access to better quality data. This will speed up vital projects like the roll-out of cancer vaccines and earlier diagnosis of lung cancer.
As Digital Critical Friends, John, Sandra and Nyaradzai will help the Wessex SDE to design a governance process that can be trusted by people in the region. Their role is to ensure research delivers benefits for the public and NHS.
One of their first tasks has been to help design and deliver public engagement events. This followed training on skills like critical thinking.
Reasons for taking part
John, who received an OBE for his services in Afghanistan, had to retire from the Ministry of Defence when he was diagnosed with MS in 2022. A local campaigner on MS, he also volunteers with the MS Society and is a school governor.
John is passionate about investing in research that could drive change for people living with MS in the future. He moved to Chandlers Ford shortly before his diagnosis.
“It put me on the doorstep of one of the leading hospitals in the country for MS”, John explained.
“I’m one of the lucky ones. The postcode lottery of current treatments means not everyone is. I see the Wessex SDE as a chance to change that – to supercharge research that could result in access to better treatments and medicine for everyone, and maybe even a cure.
Sandra works as an Ethnic Minority Researcher for Hampshire County Council and Patient Safety Partner for Adult services in the South East. She is committed to tackling health inequalities and engaging underrepresented groups in research. She has done lots to help build community understanding on topics like vaccines.
Nyaradzai, who works as an IT consultant in AI and data, also volunteers as a coach and mentor to IT students. He is passionate about the role data can play in improving health outcomes. He was inspired by the speed at which the COVID-19 vaccine was developed in the pandemic when the right data was made available.
Get involved
Commenting on his involvement as a Digital Critical Friend, John said:
“People are often nervous about data. But so many also sign up without too much thought to schemes like supermarket loyalty cards. Agreeing to use your health data for research stands to bring far greater benefits than a money off coupon.”
All three Digital Critical Friends are encouraging members of the public across Hampshire to follow in their footsteps.
“I want to encourage everyone to talk more about why this might matter and how it might work”, John added. “The best thing to do if you’re unsure is to get involved. Come and talk to us. Find out about the project and tell us what you think so we can design it in a way that works for everyone”.
Over the next two months, the Improving Tomorrow’s Health campaign is asking people in Wessex to have their say on how the SDE should be run.
To share your views and be part of the conversation, go to https://wessexsde.nhs.uk/.
Lead image (left to right): John Stainton, Sandra Hall and Nyaradzai Martin Shoko.