Connecting health and care information: it’s personal
The Digitising Social Care (DiSC) programme has started work on a new Social Care Interoperability Platform to connect health and social care. Chris Elkington, DiSC Assistant Director, presented at the Care Show London on Thursday 1 May 2025.
My eldest son, Stanley, has a rare genetic condition called Kabuki Syndrome, which means he's got quite complex needs. When he was diagnosed at the age of 2, we landed in the world of health and care with a bump.
My experience of caring for a disabled child and navigating the complexities of the system drives my passion both professionally and personally - about creating truly connected digital infrastructure in social care.
I started learning about the world of additional needs from my family life and found the disconnect between councils difficult and disheartening. In my working life, I headed the team at NHS Digital which launched a safeguarding service called Child Protection Information Sharing (CP-IS).
Lessons learned from the Baby P case and other national tragedies drove the requirement to connect 152 local authority services to the NHS. We deployed the CP-IS service to over 1,000 healthcare sites so that when a child showed up at an A&E they'd be able to tell that child was protected, all the time establishing robust data protection measures and a firm legal basis.
During my career I’ve also worked on digitising vaccinations programmes as well as the GP Connect service, so it is probably fair to say I have experience when it comes to building complex digital infrastructure.
Now aged 13, the prospect of Stanley leaving school and losing all the support he has as a child when he turns 18 is scary. So, I jumped at the chance to join the Digitising Social Care programme and make a difference in adult social care. What I’ve realised in my time here is that, whilst health is completely nationalised with a large amount of control over what data is collected and who can access it, the world of social care doesn’t work in the same way. Everything is held locally or in supplier systems and there is no way to look across the entire care activity to see how it all links together. Despite this, when it comes to direct care, I’ve seen health and care teams and professionals work incredibly well together, sharing information for the benefit of individuals. And that is what we are hoping to build on with the Social Care Interoperability Platform (SCIP).
There is no doubt we've got a long way to go before we crack interoperability and can support seamless, joined up working across health and care. But here in the Digitising Social Care programme we are busy laying the foundations.
We have been rolling out GP Connect access through assured digital social care record (DSCR) solution suppliers and releasing a set of minimum operational data standards (MODS) for adult social care. Our next phase will include creating a national, central infrastructure to support interoperability and safely share data to support better care. Through SCIP we aim to join up health and care data to help us deliver truly integrated, efficient, person-centred health and care. It will help us close the gap between health and care systems, enabling collaborative working and improving outcomes for individuals and communities.
Having an interoperability platform in place will mean that teams and professionals won’t have to connect with hundreds of different health and care systems – people delivering care will be able to access all the information in one place. It’s not a new app or website; it’s a much more fundamental piece of digital infrastructure. Think of the telecoms companies laying out fibre optic cables in our streets. We don’t necessarily interact with those companies directly, but they run the infrastructure that all our home broadband runs off.
Major IT infrastructure projects require an agile approach. This means starting with a journey of discovery – carrying out user research, hearing from health and social care professionals at every level about what they need.. then building small, testing, iterating, and slowly scaling up, improving and testing it again and again as we go. It’s the opposite of spending vast sums of money and many years building a great big machine behind closed doors, making it fit the letter of the brief we started with, only to throw open the doors on completion to find that the world has changed and it’s no longer fit for purpose.
This means whatever we build can continue to evolve as user needs evolve. SCIP will help us join up previously fragmented services, enable seamless communication and data exchanges, and help improve both continuity and quality of care.
It means that in the future, I can be confident when my son reaches adulthood that he can go between education, work, a supported living setting or healthcare settings and everyone will have the information they need to be able to support him.
None of this will happen fast, but we have committed to creating a base system by March 2026. And that’s when, little by little, things will start to change.