A feature by InterSystems
David Hancock, Healthcare Executive Advisor at InterSystems shares another industry thought-piece with the team at HTN. Having previously covered the redesign of pathways for Integrated Care Systems (ICSs) and tackled Electronic Patient Record (EPR) transformation, this time, David turns his attention to Shared Care Records.
One of the most topical issues in health tech at the moment, after NHSX published an Information Governance Framework for Integrated Health and Care on Shared Care Records towards the end of last year, there’s still plenty to consider when it comes to implementation and future-proofing.
Below, David discusses what he thinks healthcare providers should be considering in regards to Shared Care Records in 2022…
Last year, the NHS Shared Care Record programme focussed on STPs and ICSs having a basic shared record in place, striving to achieve what was termed the ‘Minimum Viable Solution 1.0’ (MVS 1.0). This meant assessment against a number of metrics and criteria, including connectivity between GP and NHS Trusts (including mental health and community trusts), and having plans in place to increase the information being shared.
In normal circumstances, MVS 1.0 would be demanding but the past year has been anything but normal. In addition to the second COVID wave, NHS organisations have also had to balance many competing priorities, not least working to recover services and deal with the elective backlog with an understaffed and worn-out workforce. After all, the biggest issues in successfully starting Shared Care Records programmes are not technical, they are more social; organisations trusting each other and agreeing on what data they will share with each other and then starting to implement this and working through their Collective Action Dilemmas, where they have to work through conflict, build confidence with each other and be able to rely on each other. Examples of these Collective Action Dilemmas are where one organisation in order to share their information has to incur cost change and disruption and gets no benefit as it is the receiving organisation that obtains the benefit receiving that information.
However, as we move into the next phase of the programme, the maturity and capability of solutions does become vitally important and ICSs need to develop clear roadmaps on how their Shared Care Record solutions are going to meet the next set of challenges. After all, Shared care Records can no longer be about just extracting healthcare data from source systems, storing them in a centralised database and viewing them through a user interface like a Clinical Portal and the Phase 2 Programme Vision and Measures of Success is driving far greater maturity and capability of solutions. In particular, I would point out 4 key things;
- Being able to manage a greater variety (and changing) data set and to store it intelligently so it can be re-used for different purposes
- Supporting more flexible data architectures to meet the challenges of regional and national interoperability
- Supporting open APIs to expose data so it can be access by other applications
- Integrating insights from the Shared care Record directly into Clinical Workflow
Shared Care Records need to easily handle a greater variety of new information and be able to store it in a structured way so it can re-used for different purposes
General healthcare information such as Encounter information and Laboratory and Radiology data is well understood, but as more specialised parts of Healthcare and Social Care are digitised, Shared Care Record programmes in ICSs must support new data natively or be extensible to handle new data requirements that demand the management of structured data. ICSs cannot afford to be forced to wait by their Shared Care Record supplier until they put the required data items into their schema as their solutions will just not move fast enough to support the requirements today and the evolving requirement over time. For example;
In the past, assessments and Support Plans are documents that have been shared from Social Care to Healthcare as unstructured documents (e.g. PDF documents), but today’s requirements for sharing data from social care are more demanding. For example critical data such as Deprivation of Liberties Safeguards, whether a patient has an Active Mental Health S117, whether they have an active safeguarding episode, or if they have an assisted bin collection is the kind of information that the NHS will want to see and that cannot be buried in documents that users have to open and read through. This type of data needs to be stored in dedicated fields in the data model and really easy for users to see and be alerted to. If it isn’t this data, then there will be more other data that needs to be shared as structured data. This inevitably means a solution having an extensible data model, extensible by the Shared Care Records programmes. This is equally true with more general Social Determinants of Healthcare data, where much of the data does come from local authorities.
Similarly more specialised parts of Healthcare are being digitised, so the data from these systems needs to be shared where appropriate in the Shared Care Record. The best example of this is the implementation of regional Maternity Solutions that span multiple providers and even multiple ICSs. Here a Shared Care Record needs to support some specialist Pregnancy data and again if the data required is not supported in the Shared Care Record solution, it must be extensible on the project, rather than having to wait for the supplier to put it into their product.
InterSystems has done exactly this with new data that has to be shared, smoothing the exchange of data between the NHS and Councils and also helping Providers better treat Pregnant women and Mothers as they move between different providers.
Implementation End of Life Care Plans
End of Life Care Plans are one of the most important types of Care Plan to implement and this is why the Shared Care Record programme is looking to have these supported by March 2023. Across England 1% of population die every year – approx. 500,000. You can predict 75% of these patients so these should all have plans. So imagine the improvement in patient satisfaction and the reduction in unnecessary admissions you can achieve if you can implement Urgent and End of Life Care Plans? This gives you savings at scale. Having basic information such a preferred place of treatment, preferred place of death and DNACPR status are invaluable for the Urgent and Emergency care services. InterSystems has seen impressive results where we have implemented these capabilities.
Supporting mandated parts of the Core Information Standard
This is a little difficult to define right now as the mandated parts have not yet been specified, but it is possible to make an educated guess on the data that will be included, such as personal demographics, ‘About Me’, individual requirements (e.g. reasonable adjustment), legal information, safeguarding, professional contacts, personal contacts, Admission and Discharge details, allergies and medications amongst others. Again, as with other data this must be available as structured data with meaning so that that the Shared Care Record can re-use this data for other purposes. We are working with our customers to plan the further adoption of this.
Shared Care Records now need to support both a Centralised and Federated Data Architecture to support the new Interoperability Requirements of the Shared Care Record Programme
Regional Interoperability
The information governance rules for Shared Care Records within ICSs are often straightforward. The ICS has a finite number of known organisations that will be sharing data, so whilst there may be many agreements required, data sharing agreements between all of them can be defined that allows the data to be persisted in a central database. However, this model of a central database does not practically work where information needs to shared between organisations you either cannot predict you need to share data with, or there are so many it is logistically impossible to create the data sharing agreements. This is the exact problem Shared Care Records have when needing to achieve the regional interoperability in early 2023 and national interoperability by early 2024 as per the Shared Care Record programme objectives.
Supporting regional and national interoperability requires flexible data architectures of Shared Care Records so they can support a mixture of federated data and centralised. Not only have we implemented this model in Lincolnshire ICS, we have done this at huge scale in the US with national eHealth Exchange that is a purely federated models that includes 4 federal agencies, 77% of state and regional HIEs, 75% of hospitals, and 85% of dialysis centres across the entire nation.
Supporting Open APIs to provide data to other solutions
Patient Engagement – Patient Portals – can only do so much because the variability of data required for different cohorts of patients means in reality no one patient engagement solution will meet all needs. For example the strategy around Digital Maternity programme is for Mothers to pick the Maternity PHR they want and this reflects the shape of things to come because what is needed are Open APIs for access to other applications. Whilst a Shared Care Record may have a Patient Portal, or “digital front door”, perhaps more importantly is a Shared Care Record having a set of standards-based open APIs that other applications can integrate by. This really moves the Shared Care Record away from being an application and towards being a platform. This use of open APIs is driving the adoption of FHIR in The Netherlands where we are serving up integrated data from multiple systems as FHIR for consumption by other applications.
Integrating insights from the Shared Care Record directly into the Clinical Workflow of the EPR
For me this is the natural progression of the Shared Care Records programme, although not identified in the Phase 2 Objectives. The fact is that as the NHS increases its digital maturity, clinicians will be spending more and more time in their EPR, or suite of systems that make up their EPR. They do not want to leave their EPR to find other valuable information so instead of having to jump out and find information in the Shared Care Records, relevant and useful information will be made available from the Shared Care Record directly into the EPR. For example, a single medications and allergy and intolerance list for clerking patients on admission into hospital or an Encounter History from a range of Providers. In planning now, the journey of their Shared Care Record programmes today, ICSs must have this as their as their “North Star” guiding the overall direction of their programme.
