The development of a digital-first approach is central to the NHS Long Term Plan. In this piece we set out how Local Health and Care Records (LHCRs) can lead the NHS into a new era of digital interoperability. Our conclusions are based on our experience working with a LHCR Exemplar as well as clients across the NHS, from boardrooms to the frontlines.
We believe that by addressing five crucial questions, LHCRs can deliver the digital transformation required by 21st century patient populations and the Integrated Care Systems of the future.
1. Are you clear on your use cases and are you using these to drive resource allocation?
“IT systems must be designed with the input of end users, employing basic principles of user-centered design. Poorly designed and implemented systems result in frustrated healthcare professionals and patients.” – Wachter Review
The NHS Long Term plan makes it clear that the whole of England will be covered by Integrated Care Systems by 2021. This will fundamentally change the needs of users of healthcare data through ” ‘triple integration’ of primary and specialist care, physical and mental health services, and health with social care.” To make this possible, these services must have structures in place to support effective communication about patient care, including interoperable approaches to data and digital, so they can collaborate effectively to offer the best care for patients.
While these systems are being designed there is a need for the process to be completed with users, both in mind and in person. Without this user-centred approach, real digital transformation is not possible.
A strong understanding of user needs, empowered by a robust approach to digitisation, can support reimagined and higher value care as shown in figure 1 below. It’s also important that use cases influence the prioritisation of interoperability improvements – with a focus on those that generate the greatest benefits for patients.
Figure 1: The Matrix Model of digitally empowered clinical transformation
The need for a user-centred approach was emphasised by the Wachter Review, following the failure of the NHS’s previous NPfIT programme. You can read more about how to carry out user research efficiently and effectively in our recent post “User Research: three ways to do more with less”.
2. If you are running a LHCR Exemplar do you have a funding mechanism secured for after the exemplar funding ends?
“I’ve been really surprised about… how many things get piloted and how infrequently even successful pilots get taken up – because maybe the budget isn’t there anymore…” – Matt Hancock, Secretary of State for Health
In our experience, the aims of LHCR Exemplar programmes are ambitious. It’s essential for the programme team to have a clear plan to generate and maintain the scale of funding required to deliver this kind of once-in-a-generation change. This is supported by one of the 9 Principles for Digital Development, endorsed by organisations ranging from WHO to UNICEF: Build for Sustainability. This includes a focus on ‘Quantifying the long-term cost of the initiative and identifying options to sustain it financially.’
In the context of the NHS, there are several routes to funding. But in our experience, the funding allocated to digital programmes often needs to be supplemented by funding from alternative sources. One option is to bring in private partners – pharma, med-tech or venture capital funding support. However, this kind of arrangement must be aligned with patient expectations and requires significant clarity over the benefits sharing arrangements, including who owns any data and algorithms generated as part of the work.
Another option is to work towards a revenue funding model based on information generated by the programme itself. Certain programmes, including LHCR Exemplars, may support the creation of clinically and research usable data sets and have the potential to be revenue generating. This may only apply in practice to certain LHCR Exemplars, but where feasible it can be a major boon for their sustainability and scalability, if managed correctly and in line with patient expectations.
Without a business as usual (BAU) funding mechanism, digital programmes can easily fall into obscurity. This can result in “a fetish for piloting everything” (as described by Health Secretary Matt Hancock.) with a disproportionately small number of subsequent roll-outs. With this in mind, it is essential that BAU funding routes are identified as early as possible within all LHCR Exemplar programmes.
3. What governance mechanisms are in place for each project within the LHCR, and how are these being used to ensure that information governance and public engagement are handled effectively?
“The demise of care.data was due to a failure to win public trust.” – BMJ (https://www.bmj.com/content/354/bmj.i3907 )
In an era of GDPR and sensitivity about personal data, information governance has never been more important. It is particularly significant given the public controversy around some of the parties involved in several of the LHCR Exemplars’ preparations. However, with the right mechanisms in place, information governance can become an enabler rather than blocker of change.
That’s why it’s essential that information governance leads are consulted early in any LHCR programme, exemplar or otherwise, to minimise the risk of breaching regulations. Further consultation should then be included as part of ongoing governance processes.
Given the lessons of the past from Care.Data and similar programmes, it is also essential to engage the public effectively and to understand their needs and any ‘red lines’ on data sharing. This should drive information governance decisions and influence how the programme is branded and communicated with the public. This is particularly important for any uses of data that go beyond direct care, such as those outlined above as potential revenue funding mechanisms. This is highlighted by a recent report developed with Understanding Patient Data, on behalf of the One London LHCRE, which highlights particular concerns around data sharing outside of the NHS.
4. How are you ensuring that the right stakeholder engagement is happening, in the right way, for each project, so there is a shared understanding across clinical users of the system, technical developers, and senior managers?
“Care.data lost the battle for doctors’ support” – BMJ (https://www.bmj.com/content/354/bmj.i3907 )
In any transformation programme, it is vital to have a shared understanding at the outset of the programme’s aims and the tools at its disposal. If key stakeholders aren’t engaged early, it can significantly delay the programme later on.
Developing this kind of shared understanding is particularly important in digitally driven programmes such as the LHCRs. They are technical in nature – sometimes individuals may use the same terms to describe entirely different concepts. From the start, we recommend that all LHCRs agree definitions of key terms and their usage in the programme. This can help ensure both that the non-technical leads have a sufficient technical understanding to engage in debates about technical decisions, and that technical leads (such as CIOs) are able to communicate clearly and confidently to non-technical stakeholders.
In complex digital transformation programmes such as LHCRs, changes are inevitable. To maintain a shared understanding of aims and progress across key stakeholders, governance must therefore be set up to provide opportunities for cross-disciplinary engagement.
5. Have you agreed key principles with CIOs (e.g. on open architecture where possible) and with transformation leads (e.g. on benefits capture)?
“Ensuring compliance with open standards at the point of procurement will therefore be a top priority throughout the health system, because any breaches of these principles can significantly hold back the provision of safe outstanding care, regionally and nationally, while substantially driving up costs.” – The Future of Healthcare policy paper, 2018.
In any programme the size of a LHCR, agreeing key principles up front is essential to programme success. For digital transformation programmes, this includes both technical and transformation principles.
On the technical side, it is essential that principles are agreed up front with CIOs, CCIOs and other key technical leads. This helps standardise the technical approach across providers. Two key technical principles it is essential to agree an approach to are outlined below:
- Data standards
NHS Digital highlights the importance of effective data standards, to ensure every subsequent step in the lifecycle (assembly, analysis and interpretation, distribution and change) is made easier for each system and organisation involved. To achieve this, data standards must be agreed upfront, whether these are FHIR standards or others.
With the emergence of NHS X as a medium for developing, agreeing and mandating clear standards, the national picture on standards may evolve but it is essential that there is a consistent view within a LHCR system.
- Open architecture where possible
An open architecture approach that makes transfer between different solutions as simple as possible will support the ambition laid out in the Department of Health’s statement that “We should be using the best off-the-shelf technology where our needs are like everyone else’s, and not building bespoke solutions where they are not needed.”
Whatever the approach that’s taken, it’s vital that there’s a shared understanding of the decision and what it means for the programme.
A core focus of the LHCRs is improving patient care and outcomes. So from a transformation perspective, it’s essential to have a clear method in place to allow benefits capture.
One approach to this is value-based healthcare (VBHC). In 2006, Porter and Teisberg published Redefining health care: creating value-based competition on results. This set out a methodology to help healthcare leaders to define the issues that matter to them, then develop processes to measure data about outcomes for patients and costs across the system.
For example: finding a way to capture data routinely, both about direct, health-related outcomes (such as success rates of a procedure) and indirect outcomes (such as the amount of time a patient has had to take off work.) In the case of LHCRs, an indirect outcome could be the amount of time patients have had to spend gathering or maintaining a paper personal care record.
A number of health economies are looking to embed this approach into everyday practice in the NHS, most notably, King’s Health Partners, the Academic Health Sciences Centre covering a population of eight million people in south London and south east England.
As for the technical principle of open architecture, the key issue here isn’t a particular approach to capturing benefits (VBHC is just one option) but rather a shared understanding of what’s being measured and what it means.
Summary: bringing it all together
It’s important that LHCR programmes have the following elements in place:
- Use case driven
- Supported by sustainable funding streams
- Clear information governance requirements and mechanisms to support them
- A shared understanding of programme aims and mechanisms
- Agreement on key technical and benefits capture principles
If you’re a leader in the LHCR or interoperability space tackling any of these issues, please get in touch to discuss where you are on this journey and how 2020 Delivery’s experience could help you.
- Antonio Weiss is a Director at 2020 Delivery. He advises senior clients on user-centred design, innovation thinking, and using technology to redesign public services to meet citizens’ needs.
- Jonathan Chappell is a Director at 2020 Delivery. He advises NHS trust boards, clinical leaders, commissioners and central government departments on issues ranging from delivery of new population health models for chronic conditions, to investment strategies that deliver growth and transformation in a cash-constrained environment.