When the Local Health and Care Record Exemplars LHCREs were created, the official line is that they would support local direct care and enable population health management and analytics at regional level. But, as Digital Health editor Jon Hoeksma reports, tensions are emerging on whether they should also provide a bridge to a federated Care.data-like national data resource.
What is the core purpose of Local Health and Care Record Exemplars (LHCREs)? Are they to be designed to primarily support the direct delivery of care locally, together with regional population health management and analytics? Or are they a stepping stone to creating normalised data that can be linked together to create a valuable NHS national data asset and capability?
Officially, the line is that LHCREs should support both, starting with an emphasis on local direct care. But Digital Health News has learned NHS England is insisting the projects focus on providing normalised data for national use, potentially at the expense of the local care requirements. And tensions are arising as a result.
On 31 January, representatives from the eight LHCRE projects for an NHS England-organised Local Health and Care Record Programme Conference, at which Matt Hancok described LHCREs as the missing link to integrated care.
At a 5pm meeting at Elephant and Castle, immediately following the event, NHS England’s deputy CEO Matthew Swindells challenged the LHCRE leads on how they would standardise, or ‘normalise’, data to enable a common library of analysis tools to be run across LHCREs nationally.
“This is not what we signed up for”
One source told Digital Health News: “The bone of contention is NHS England’s insistence on persisting [storing] data at scale. And many of the LHCREs are simply saying this is not what we signed up for.”
They added: “Matthew Swindells had all eight SROs from LHCREs after the meeting and he made clear that this has to be about persisted data.”
The NHS England deputy CEO brings an in-depth knowledge of the US experience of population health management, having previously led on it for Cerner. He is said to be a leading advocate of the need to persist data at scale and developing a standard suite of tools that can run across each region.
“Matthew, because of his population health knowledge is anxious about persistence at scale,” another source told Digital Health News. “Although it’s not totally explicit in the LHCRE documentation it is strongly implied that you need persistence at scale.”
Without persisting and normalising (standardising) data at scale, it becomes very difficult to develop regional population health management. This is seen as key to the integrated care systems, into which 14 sustainability and transformation partnerships (STPs) have evolved and which it is hoped many more will become.
Developing a single data-layer at a regional level is also critical to the planned regional Digital Innovation Hubs. These are envisaged by NHS England as enabling researchers and academics to mine aggregated regional databases of anonymised NHS patient data. Three are to be developed from the five original LHCRE sites.
Taking a dip in the lake
In a data lake setup, patient data is ‘poured’ from local clinical source systems, and then blended together to create large normalised databases of anonymised patient data and enabling regional analysis.
One source linked to the programme said: “They [NHS England] can appear to have no interest in any part of LHCRE specifications other than data normalisation and sharing back to the centre. There is a tension between what people paid for and what they really want.”
The potential challenges here are two-fold. Firstly, not all of the LHCREs are yet designed to support direct care first and secondary uses second. Most of programmes, such as London, build on a patchwork of existing shared records initiatives. While many ‘persist’ data extracts for direct care coordination or some analytics and research, they have have not all been designed with this as their main purpose.
The need for open IG debates
Furthermore, a linked-up data lake approach runs into major information governance (IG) questions and begins to resemble a reboot of Care.data. This programme, which ran from 2012 to 2016, was axed after singularly failing to win the trust of the public or medical profession on IG.
Sources close to several of the LHCRE programmes say they signed up for creating regional data lakes of blended data to support patient care and analytics. But they emphasise they did not agree to then connecting these together to assemble a normalised national data layer built by linking the regional lakes, and doing so without obtaining local consent potentially risks losing public confidence.
A further source, a veteran of record sharing projects, said: “I think the objective can be firstly to support direct care, and also to provide access to context-rich sources of data for useful aims of service management and innovation, as well as appropriate research.”
However, they added: “We do not need nor support regional or national lakes of data, which would provide a focus for distrust from patients and people, be associated with complex issues of management of IG, and inevitable risk of data conflicts, and lack of clarity, and problems of data curation.”
One non-LHCRE CCIO working on shared records said there were strong arguments for creating blended regional databases. But they acknowledged that IG represented a significant potential stumbling block.
“There are a range of opinions. Personally, having seen some of the work done in the US by the large health exchanges, I can see the advantages from a population point of view of holding the data together. However, I completely agree that we need these IG debates in the open.”
NHS England declined to respond to detailed questions posed by Digital Health News but said in a statement: “NHS England is not creating a national data layer. The focus is on local health and care records.”
A spokesperson added: “The Local Health and Care Record programme will improve decision-support for clinicians by ensuring that clinically relevant information about a patient, from all parts of the healthcare system, is available at the point of care.
“This will help front-line staff improve care for patients, in London this approach has already seen success with patients accessing 111 services being identified as potentially frail, enabling proactive interventions in support of their care needs.”