Comment: Shared care records: just a pipe dream?

Published: 2-Aug-2018

There’s a sense that the NHS is finally on course to overcome long-time challenges to sharing health records, but Felim McCarthy, senior clinical consultant at ReStart Consulting, questions whether the current blueprint approach will work for some regional partnerships trying to achieve a fully-integrated health record

To date, progress of shared care records across health and social care has been mixed and it’s fair to say we are still learning what works and what doesn’t.

Clinicians do not really care where the data comes from so long as they can trust what is being provided

The initiatives around delivering shared records have evolved – namely Local Digital Care Records, Sustainability and Transformation Plans, Accountable Care Systems, and now Local Health and Care Record Exemplars (LHCREs) – but the ambition has not changed.

In short, sharing records is about making crucial patient information more accessible to clinicians that can ultimately help them to save more lives, and we must not lose sight of this.

The shared care record’s value lies in the ability to have the right data presented at the right time along a patient care journey.

Clinicians do not really care where the data comes from so long as they can trust what is being provided.

Having worked with the NHS for over 30 years, I’ve seen first-hand the immense impact that speeding up access to patient information can have to clinical teams.

Back in the late 1980s I recall seeing busy hospital staff having to produce a discharge notice and summary of care for each of the PAS, laboratory, radiology and cardiology information systems that the patient’s information was stored on.

I remember thinking what an incredible waste of clinical time and unnecessary duplication of effort.

The shared care record’s value lies in the ability to have the right data presented at the right time along a patient care journey

The efficiency benefits associated with interoperability were as clear then as they are now. And, while some clinicians are benefiting from better access to patient information today; many more are still wanting a more-complete picture of patient care.

Blueprints: over-complicating matters?

LHCREs are the latest NHS shared records initiative that continues to focus on improving direct patient care, with Dr Simon Eccles, chief clinical information officer for health and care, acknowledging that ‘sharing information for people’s individual care can be lifesaving’.

Funding for the five selected exemplars is certainly welcomed – Greater Manchester, Wessex, One London, Thames Valley, and Yorkshire and Humber – will benefit by investing £7.5m to further develop their existing shared records programme. They will also mature digitally to support the use of de-identified data for the creation of future health and social care plans which meet the requirements of the local population.

A positive from this initiative is that it is all about leading from the front and sharing experiences and best practice with those not invited to bid for funding – let’s call them the ‘have nots’ – who make up a significant 60% of England’s population.

Exemplars will create blueprints – a good concept in theory – but they have the potential to over-complicate and delay the ability for clinicians to access all of information they need.

Not only will blueprints take time to gain agreement across a range of organisations, the specific requirements go beyond simply supporting the delivery of direct health and social care.

This immediately increases information governance requirements in addition to the need for agreed coding for data exchange and the support for system-to-system exchange of data.

There are questions marks over how replicable the blueprints could be. If a blueprint is truly designed to meet the requirements of the local population, it will have to be adapted to other localities where the population and their needs will undoubtedly be different. Therefore, is it really a blueprint?

Do portal technologies work for everyone?

Many of the exemplars will already have existing shared record technology in place, such as portals. But will they serve the needs of the ‘have nots’? The two types of portal – clinical and patient – are used for very-different purposes.

Clinical portals, which traditionally plugged gaps not covered by an electronic patient record and connected minor systems such as speciality systems, offer a fuller picture of the individual. They are accessible by any professional giving direct health or social care to the individual.

A patient portal is designed to involve a specific sub-set of patients in their care and help them cooperate with a specific group of clinicians. This technology is consent-based and will always be only a component of a health and social care record. Vital information which could affect clinical decisions and potential outcomes will often be missing.

In their current iterations I believe that clinical portals cannot be effectively used as patient portals and vice-versa.

Prioritising direct care

While I accept there is a need for care planning, much of the drive for interoperability is based on secondary use for planning and in determining contract pricing, but I believe we should be prioritising the immediate needs of improving direct care.

In their current iterations I believe that clinical portals cannot be effectively used as patient portals and vice-versa

A truly-integrated record is one which provides a care professional with the data necessary to treat an individual and make informed decisions. It is reliant on the actions and thought processes of the individual using the system, rather than on having all the systems ‘talk to each other’.

In my view, the ‘have nots’ will need to spend their efforts on releasing benefits quicker through incremental integration rather than wasting time and money on striving for full interoperability.

We’ve heard feedback from organisations within the ‘have-not’ community and they tell us they do not have the time or the money to try and achieve the ‘ideal’ of a fully integrated record. Their focus remains on delivering clinical and efficiency benefits by sharing records.

Scaling digital maturity, step-by-step

A different approach for the ‘have nots’ is the application of a presentation layer which is designed to extract data from source systems and then present that data to the user.

It does not attempt to exchange data across the source systems, but rather it displays the data and provides an indicator for the provenance of the data.

In turn, this allows the end user to make decisions based on both the data and their knowledge of the source of the data. Staff are not reliant on stored data which may be out of date.

This approach can be used incrementally to focus on areas of urgent need, such as avoiding inappropriate A&E attendances, or reducing delayed transfers of care.

Indeed, the potential is so great, that allowing the ‘have nots’ to achieve the levels of data sharing comparable to or better than that of the exemplars will propel service and organisation transformation at a speed greater than simply replicating the partial successes of integration and implementation.

Don’t delay digital transformation

The challenge of trying to deliver full shared care records is distracting from the wider aim of achieving transformation continues.

Clinical and digital transformation is often lost in the rush to implement a clinical portal or patient portal, and if these technologies fail to deliver expected benefits, digital transformation will take longer.

Transformation is about people, process and technology. If clinical staff run out of patience when it comes to failed promises, and finance staff are no longer willing to endure the impact of costly over-runs and failed ROI, then momentum suffers.

If we are to see shared care records as anything other than a pipe dream for the ‘have nots’ then we must start to look at other ways of working.

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