On 25 April 2018, a small number of regional health and care collaborative communities across England are expected to submit bids for national investment in shared health and care records. The Local Health and Care Record Exemplars (LHCRE) selected will receive up to £7.5m in national investment, which they must individually match.
Shared care records are not a new concept in the NHS, although it has a chequered track record. However, there is a sense that the current process has finally seen the NHS get the balance right between patient care, privacy and feasibility.
Former director of both digital transformation at NHS Digital and digital technology at NHS England, Beverley Bryant, said she tried to drive the uptake of sharing care records when she was at the NHS between 2013 and 2017, by getting A&E consultants access to the GP Summary Care Record (SCR).
These have a small amount of information such as allergies, medicines and adverse reactions – but the benefits of making them available outside of GP surgeries is huge.
But this is just the tip of the iceberg. The idea of a shared care record is that all health practitioners; consultants, GPs, emergency services, social care, nurses and mental health professionals can all access patient information, in real-time.
So why has it taken so long to start working on this? According to Bryant, who is currently chief operating officer (COO) at System C and Graphnet Care Alliance, which works on shared care records, many of the issues stemmed from the early 2000s, when a decision was made to lessen the influence of strategic health authorities and then remove them altogether.
"This led to a sense of competition between health care providers, so it was difficult to get anyone to agree to anything," Bryant told Computer Weekly. And this was crucial, because unlike many other projects the NHS has initiated, the current idea around shared care records doesn't involve taking directions from the top-down. Instead, it has been cultivated at a local and then regional level. This means hospitals, GP surgeries and other health and care organisations have to work together.
Those recognised as being leaders in the field have then been invited to bid to become a LHCRE.
Mark Wright is head of IT at Manchester Clinical Commissioning Groups (CCGs), which is formed by the region's CCGs joining up together and is one of the organisations invited to bid. His team has been working on shared care records for the best part of the last four years.
The organisation began by identifying people with complex needs, and then worked on how it could support these people and incorporate them into its care platform.
The information held on the platform could include who the patient's career is, their social workers, their background, their profession and what their interests are.
"This helps to paint the picture of the patient – and this is what we're trying to do so that everyone that interacts with the patient has an understanding of them, can make them comfortable and ensure they get the best quality of life and outcome," he said.
if a patient who frequently falls but does not find it comfortable to recover in hospital and instead prefers if someone from the family can help them at home, a health professional can be notified of this. The information could also alert a doctor that while a patient's blood pressure may seem abnormal – it is normal for them for whatever reason.
This narrative extends all the way to the patient's life plan as well; so information could include preferred place of death and whether the patient wants to be resuscitated.
Adrian Byrne, CIO of the University Hospitals Southampton NHS Foundation Trust, said the records will go beyond merely storing information as they have been for several years.
"The first generation was all about repository, where as the second generation will be much cleverer in terms of interfacing, and incorporating things like microservices and APIs that don't exist at the moment," he said.
So instead of a clinician having to view data via someone else's health system, they will be alerted without the need to launch and search through an external system, that their patient has Type 2 diabetes, for example.
The aim for now though is to create exemplars that demonstrate that things can be done in scale.
"The bid requires a certain population size, so none of [the Yorkshire and Humber collective] would independently hit that population size, which is a good thing because people are coming together as a larger group," said Cindy Fedell, CIO of Bradford Teaching Hospitals NHS Foundation Trust.
"It's almost like a proof of concept that can then be grown across counties; they're looking for places where they're using open standards and can link up systems, and this is why they're asking for a bigger population," she said.
Regions that haven't been invited to bid, or are not selected, will then be expected to be able to replicate the way a LHCRE works.
Paul Bevan, research director at Bloor explains that most progress has been made where the move towards Accountable Care Systems (ACS) or Accountable Care Organisations (ACO) has developed fastest.
"Many areas now have patient GP summary care records that hospitals can view online. The medical interoperability gateway (MIG) and developments in the main GP programmes from EMIS and TPP have enabled some areas to move to a more integrated view," he said.
Sceptics may be concerned that the NHS is merely working on another version of the controversial Care.data programme, but there is a key difference, said Bryant.
"What Care.data was trying to do was really share data for secondary use, where as this is about direct care; it's to allow health professionals to give diagnoses and deliver direct care," she said.
But is there anything stopping the NHS from sharing the data with insurance, pharmaceutical or research companies, or indeed any other commercial enterprises?
"We have a duty to never share data with commercial companies and I think it's important where if it was to be used for research purposes, patients were asked if they would consent to it," said Bryant.
"We must not hide our intent behind 15 layers of conditions that the public never reads; lets be straightforward and honest, and that's how you build trust because the people are really confident that you're not going to do something daft with the data and give it to a commercial company that the patient doesn't want it to go to," she said.
However, that is not to say that the data couldn't or shouldn't be used to help the NHS in other ways aside from direct care. "The next stage is an opportunity to move onto population health management and make use of the big rich database of patient records that shared care records gives us," said Bryant.
There are stumbling blocks to this – but Bryant is confident that if dynamic consent models could be in place to ask patients whether they'd be happy to share their data for population health management, then there would be no reason why companies like Graphnet wouldn't attempt to do this.
But this does not mean that the NHS would create a national care record. In fact, Bryant said that this isn't the plan at all.
"LHCRE is helping because we'll have regional shared care record platforms and then have a national locator service that allows you to see whether or not there is a record held of that person in another local database across the country," she said, adding that about a decade ago, the NHS did some research which found that 90 percent of care is delivered in about 15 regions – and this means individuals can be cared for on a regional level.
"People get nervous when all their data goes into some central place, and this is more of a regional hold so it feels better and I don't think people will get in as much trouble – they've learnt from Care.data," said Fedell.
Although no one can be completely sure that a national programme isn't going to be the ultimate aim of the programme, or that new leadership within the NHS may decide to go this way in the years to come. "You never know, they might decide they want to do this," said Bryant.
Either way, the NHS is ensuring that information governance forms a crucial part of the bids for LHCRE.
While the NHS's mission is clear – there are still some obstacles to overcome. For example, suppliers such as Graphnet need to work with one another to ensure that they are aligned in regards to interoperability.
"If we're going to do shared care records over a three to five million population, then there will need to be integration with different software and systems, so we're busy working with competitors to make sure we've build in integration around boundaries," said Bryant.
Mark Wright said there are a number of open standards available, but there is a difficulty with some of the GP providers or secondary care providers whose systems have traditionally not been designed to share information in that way.
"It's an ongoing dialogue and challenge but there are a number of standards you can pin your heart on and rely on, it's just about making sure everyone understand their part in that," he said.
The NHS also wants health organisations to be supplier agnostic and for them to work with suppliers to develop open standards.
NHS and social care organisations are still unsure of when to share information because of a "confusing" regulatory framework, and the National Audit Office is unimpressed with the progress on health and social care integration.
House of Lords artificial intelligence committee hears evidence from experts about the challenges of sharing NHS patient data.
Many people will use health services in more than one region, across borders, and therefore their data needs to be shared across both areas.
This is something that Manchester CCG is already working on, by collaborating with the ambulance service and extending the data towards Cheshire, so that Manchester and Cheshire records can be looked up for any of the patients in any of the care settings. Others regions will have to work on similar solutions.
Another area that health organisations need to consider is the EU General Data Protection Regulation (GDPR), coming into force in May 2018.
"The NHS already adheres to a range of additional information governance regulations and policies that have existed long before the GDPR was considered," said Andrew Earnshaw, healthcare expert at PA Consulting Group.
"However, one of the more complex elements reinforced by the GDPR is the mechanism of consent – especially the need for clear affirmative action (opt-in rather than opt-out), clear explanations of the terms of consent, and the new requirement surrounding parental consent for children," he said.
Shared care records mix direct care uses with implied consent exceptions with secondary care uses, which will now require explicit affirmative action.
"In many cases, the GDPR presents an excellent opportunity to raise awareness of information governance across the NHS to improve patient care," said Earnshaw.
The likes of Berkshire, Dorset, Hampshire, Isle of Wight and Greater Manchester have all made substantial progress in shared care records, but Earnshaw suggested NHS England has to invest to ensure there are inexpensive, practical and repeatable steps that can be taken by those other regions that may not have the scale of financial resources available to the front-runners.
NHS England's approach is a positive and improved position that focuses on direct care and privacy – and on regional initiatives that will not be beset by the same issues as a national programme.
The key message, as NHS England CCIO Simon Eccles has stated in the past, is that no patient has ever died through health services sharing information with each other. In fact, the benefits of integrated care mean better patient outcomes.
The NHS must now ensure it does not forget this programme is about direct care – and not about sharing data with the private sector.