A momentary glance at NHSX’s website tells you the organisation’s mission within seconds:
Driving forward the digital transformation of health and social care.
Two years after the unit’s formation, chief executive Matthew Gould is emphatic that the latter two words are as important as the one that precedes them; something emerging integrated care systems might note.
Speaking to health commentator Roy Lilley at an Integrated Care Conference hosted by the newly named Institute of Health and Social Care Management, Gould said it had been “heartening” to see new guidance from NHS England and Improvement that had “digital and data in the headlines, woven all the way through it.”
“No-one reading the guidance about what it means to be an ICS can come away with any view other than ICSs need to use digital and data to offer genuinely integrated care,” he said.
September is only chapter one for shared care records
The guidance that Gould was referring to, ‘Integrating care: next steps to building strong and effective integrated care systems across England’, says ICSs will use “digital and data to drive system working, connect health and care providers, improve outcomes and put the citizen at the heart of their own care.”
Specifically, it says they should “develop or join a shared care record” to “join data safely across all health and social care settings, both to improve direct care for individual patients and service users and to underpin population health and effective system management.”
Gould told the Commons’ public accounts committee back in September 2020 that he expects healthcare economies to have a ‘basic’ shared care record in place by September 2021, by which time the ICSs will be expected to have implementation plans in place.
This basic record (or minimum viable solution as it now tends to be called) is being taken to mean a record that can deliver the core information standard developed by the Professional Record Standards Body. This is a lot more ‘basic’ than the records developed by the local health and care record exemplars that were set up as part of the global digital exemplar programme.
But Gould told Lilley that the September target is only a first step. In fact, he suggested, that’s when the hard work will begin. “We are working to a minimum threshold we want to get everyone over, but that will be the end of the first chapter, not the end of the book,” he said.
“We are clearly not going to have everyone going all the way we want them to go by then. Putting in a shared care record is not straightforward. Part of it is about tech, but a lot of it is about trust, people, sorting out the information governance.”
Matthew D’Arcy
Building blocks still missing
NHSX is working hard to make sure the shared care ambition goes to plan. For example, it is looking at procurement; although suppliers working in the space say they are already busy responding to strategies, engagement events, and tenders.
Gould told the virtual conference that his unit is building a new framework with a plan to “get it out soon”. It is also working out the “resource offer” that might be made to integrated systems to support their procurement and development activity.
And, he said: “We are working out the data architecture so that we can make sure when we build it, we build it in a way that helps the movement of data around the system overall rather than creating a legacy we will need to fight in the future.”
With a national lockdown still in place, health and social care services under enormous pressure from Covid-19, and a significant backlog of elective activity to get through, people might question if a September deadline is realistic or appropriate.
But for Gould this is important to patient care. “The pandemic has shown us that the ability to have data flow between care settings, between GPs and hospitals, between health and social care, makes a material impact to outcomes and to what happens to patients,” he said.
“If we put the support in place and make it as easy as possible to do this then we will be able to make progress by September. People are massively busy and over-stretched, but we have shown that even in the thick of a crisis we can make this sort of thing happen.”
Keeping the ‘best bits’ of emergency regulation
The coronavirus crisis has seen significant strides taken in the adoption of digital in health and care, and in the ability to get data where it needs to be. One of the reasons that is often given for this is that the system suspended some of the data sharing restrictions that were in place before the pandemic hit.
Gould recalled a conversation he had with information commissioner Elizabeth Denham on this. “She was really determined to make sure that unnecessary worries about IG didn’t get in the way of clinicians saving lives,” he said.
“She was very clear that if you are a nurse or a doctor, and you are dealing with your patients’ data in good faith and sensibly, and if you are trying to look after them, she could see no circumstance where any enforcement action would be taken. For me that was a fantastic opportunity to send out something super clear.”
NHSX issued guidance to help health and care professionals make judgements on data sharing.
It didn’t say the law doesn’t apply. It said the GDPR accepts that in certain circumstances people need to make difficult decisions and the regulator has a margin of discretion.
Since then, NHSX has worked to capture guidance in an online portal that is “easy to use” for IG experts, for clinicians or for members of the public, and that is endorsed by the Information Commissioner’s Office and the national data guardian Dame Fiona Caldicott.
This is something it wants to keep. Gould said his organisation is “also looking at how we can capture through legislative change the best bits of emergency regulation – the so called COPI [control of patient information] notices – that have applied since the start of the pandemic.” The notices have an expiry date. Currently, it is March 2021; although this has been quietly extended throughout the pandemic. NHS England and Improvement is looking at legislative proposals to enshrine the status and role of ICSs in law sometime next year.
A duty to share – right now
More could be done to improve the flow of information right now – before changes to the law and before shared care records come into place – simply by building on the trust that developed between organisations determined to do their best for staff and patients during the pandemic and the ‘can do’ spirit they developed with suppliers.
“A lot of this is not about changing the rules,” Gould told Lilley. “It’s simply about giving people templates, clear guidance, very straightforward simple advice so you don’t need a PhD in data protection law to navigate it” and making it as easy as possible to work with vendors. “We have to find a way to give people confidence, that not only can they share, but they are under a duty to share,” he concluded.
