Health Service Focus

NIECR: an aspiration achieved

Many areas of the UK are just starting to explore the large-scale digital care record projects that will be critical to delivering their integrated care and population health management agendas. Trusts are carrying out fact-finding missions and preliminary investigations, yet there are already records up and running that are not only delivering benefits, but demonstrating how those benefits escalate as projects expand and mature. 

The Northern Ireland Electronic Care Record, or NIECR, is a perfect example. It might have started as a simple portal, but has grown into a “base record” and “business critical system.” 

Early days 

The NIECR celebrated its sixth anniversary on 4 July. It started life as a portal, pulling in information from the systems in use at Northern Ireland’s five health and social care trusts and its ambulance service to create a single patient record. 

Since then, additional features have been layered in on top of the basic functionality that was created, using the clinical portal that is part of our population health management platform. Engagement has now grown to the point where the NIECR has 25,000 active users. The NIECR has put the patient at the centre of the system. It means people are connected to their care and the people who care for them are connected to each other. 

Integration of the Emergency Care and KIS systems 

Two of the key components of the NIECR are access to the Emergency Care Summary Record, which records a patient’s name, date of birth, gender, address, phone number, medication and known allergies, and access to the Key Information Summary (KIS) record. 

This supports people with chronic conditions or who need end-of-life care, and so includes additional details, such as a patient’s wishes. There is incredible value in making this information available to the many professionals caring for a patient with complex needs. 

One story that demonstrates the impact of the KIS came from our ambulance service, which went to see an elderly person who was incredibly confused. The crew was able to look at the KIS and see that she did not need to be taken into hospital but could be cared for at home. That saved a lot of resource and, of course, stress for the patient. 

Cross-community collaboration 

One of the additional pieces of functionality layered into the NIECR is a comprehensive cross-community collaboration solution, which has been used to build a diabetes pathway that can be used in various settings, including the patient’s home. 

The pathway is split into two main sections: a patient summary that can be used as the foundation for any care pathway for any patient group, and a diabetes specific section that can be used to capture medications, assessments, and even pregnancy-specific data for women with gestational diabetes. 

Information can be pulled from the pathway into traditional formats, such as letters, and then sent directly into GP systems. Before we had the pathway, each trust had its own diabetes system, so a consolidated view of a patient’s data was not possible. 

Now, pretty much our entire diabetes population is enrolled on the pathway, which proved very useful for patient care. 

Enabling patients to engage with their own health record 

Another feature layered into the NIECR is our engagement functionality – a patient or citizen portal that Northern Ireland has been trialling for the past year with dementia patients to leverage powerful data sources to give individuals easy, anytime access to their own health record. 

At the moment, the patient portal – My Care Record – provides the citizen/patient with their recent and upcoming appointments and a searchable, validated and curated library of health-related information provided by healthcare professionals. 

There is also a bi-directional file sharing facility for direct exchange of information between a patient and a healthcare professional and a ‘circle of care’ facility that shows everybody involved in their care. The patient can also choose to nominate members of their circle of care as ‘representatives’ and give them access to the portal on their behalf. 

A second phase will add in clinical documents and is due to go-live this summer. Also in phase two is a goals module, which will enable the patient to set various goals and update progress towards them. 

We started with dementia patients because they are a tough cohort; one likely to expose all of the information governance and consent challenges that a patient portal project might face. But because we are building the patient portal on an electronic care record, it is condition agnostic. It can support any condition that a patient might have. 

Once phase two is in place, access may be extended to diabetes patients, because of the rich clinical data built up in the diabetes pathway. Some doctors already say that they turn the screen around to show their patients what they can see, so we are really taking that on board. 

Standing on firm foundations 

This record of success has not always been easy to achieve. The NIECR has succeeded because there was a focus, in the early days, on getting the basics right. For example, the NIECR has worked hard to maintain the confidence of the organisations whose systems supply its information.

There is a clinical content group, with a member from each of the trusts plus a GP, that debates and prioritises ideas, and decides when new content is ready for launch. There is also an information governance team, with the same kind of membership, that decides on information governance issues (patient consent was initially based on an opt-out following an information campaign; but is now based on the public task provisions of the GDPR). 

To drive adoption, champions have been funded at each trust to support deployment and “evangelise” for the system. But, at the end of the day, the key factor has always been that this is a system designed for clinicians, by clinicians; or, increasingly, a system designed for health professionals, by health professionals. 

Over the past six years, there has been a lot of close working with health and care organisations, with health professionals, and with patients. It has been a hard journey, but totally worth it. That is what has kept us going and will keep us going through the next phases as well.

MORE INFORMATION

Tw: @BSO_NI

W: www.ehealthandcare.hscni.net