Industry Voice: Collect, Store, Share: How NHS Wales is delivering shared care records for 3.1 million patients

Rhidian Hurle, Consultant Urological Surgeon, formerly Medical Director NHS Wales Informatics Services, Joint clinical lead for AMBU urology services, AMBU Associate Medical Director (IM&T), RCS Surgical Tutor for Princess of Wales Hospital, and the first to be appointed National CCIO within the UK nations. Here Rhidian explains the approach they are taking in Wales to shared care records, and why he is such a keen advocate for collecting, storing and sharing patient information.

My interest in patient records started very early while I was still at school. My father was a rural GP in west Wales and I often helped, answering the phone when he was on call and with minor admin tasks. One summer in the 1980s I had a job transcribing paper Lloyd George patient notes into the new electronic system- an experience that gave me an early glimpse into how patient information is captured and used. At the time I didn’t want to be a doctor, but later events meant that I did become very interested in medicine as a career, getting through medical school and eventually became a surgeon specialising in uro-oncology.

Throughout this journey, one issue kept resurfacing: I often felt I didn’t have a complete record of my patients’ history. Records were kept in silos, making it very difficult to get an overall picture of what treatment a patient had received and how they were progressing.

The right (and secure) way to collect, store, and share patient data

We should be collecting data from every care event, storing it and sharing it with whoever needs to see it when providing direct care. It should be stored centrally, cyber secure, and shared with health care professionals along the patient journey and with the patient too.

No one would argue with any of this – and in delivering this vision, Wales, often the cradle of innovation and forward-thinking (the NHS was born in Wales), has taken a different approach to the other countries in the UK. Our Once for Wales strategy aims to deliver high quality accessible health and care services for the whole of Wales for the benefit of all. We have a central repository for all patient information, and this holds health records for some 3.1 million people, includes every blood test, every X-ray (complete with links to the images) and the Wales version of the summary care record. The system, called Welsh Clinical Portal is available for iOS and Android devices and is used by over 45 thousand clinicians across all areas of Wales.

What is the Welsh National Data Repository (NDR)?

The Welsh National Data Repository (NDR) is a major government sponsored programme with partners including Google. It is essentially the Welsh Health Data Space. Patient data is stored securely in the cloud, enabling the removal of local infrastructure from healthcare locations which brings cost efficiencies and maintains an always on services. This investment delivers significant benefits in the long term, supporting direct care and having patient information stored centrally means that we have a longitudinal record of 3.1m people. This provides an opportunity for learning, improvement in population health, innovation and an understanding of the impact of deprivation on health. In parallel with other UK initiatives, large data sets such as the NDR, provide valuable information for research.

Digital change management: It takes time to deliver sustainable change

In my role as surgeon, I can only operate on one person at a time, but I do see instant results, which is very gratifying. Rolling out digital capabilities on the other hand takes a long time, because it is all about change and bringing the workforce along with you. Yet, it can transform the lives of millions of people, which is also very gratifying.

Here’s another way to think about it: delivering change is like herding cats. When you’ve got plenty of cat food it’s easier, and when you run out, they go off and make their own arrangements. Money is the current driver, and if policy is aligned with funding, you can deliver change much faster than if you are working from the bottom up. In addition, when combined with a united clinical voice there is a real chance to effect change quickly, particularly when the clinical voice is aligned with patient safety.

My four Ps of change are: politics, policy, people, and protectionism. The first three are obvious, but the real challenge is overcoming people’s concerns about change, which leads to protectionism. When building systems, it is important to remember that any product, system or process needs to be useful, usable, and used. There is no point in building something if it doesn’t add value to the end user. If it isn’t easier, quicker or delivers visible benefit than their previous way of working, people will resist doing it.

Recognising IT professionals implementing digital change in healthcare

Those IT leaders implementing digital change deserve recognition. There is a growing ecosystem of professional development opportunities, including the CCIO network across the UK as well as The Digital Academy and FEDIP, led by Andrew Griffiths, which are at the forefront of developing professional standards and qualifications in digital health. This reflects a wider recognition across the sector that high-quality healthcare delivery is increasingly inseparable from strong, well-led IT foundations.

The future is bright, the future needs digital transformation

Digital shared care records have delivered many benefits to the frontline in Wales. We have our own EHR built with our users by Digital Health Wales, which is co-funded by all the health boards and is incredibly valuable. We are currently moving to a single supplier for GP systems. In an environment where it is difficult to attract and retain staff, training people once on a system that they can use in many places makes their working lives easier.

Similarly, the Welsh Nursing Care record, where all care plans are standardised, uses the same instance across Wales, saving nurses and care workers time, supporting less than full-time working, mobile working, and locum banks. People can be more effective as soon as they start their shift, regardless of location because they are trained and familiar with the systems.

NHS Wales “collect, store, share” approach, enabled through a thoughtful blend of best-of-breed and national solutions, has created strong foundations. We build, buy and blend systems to support care delivery and the real opportunity now is to build on this progress. As more people live longer with multiple conditions, the need for truly connected, user-centred digital systems will only increase.

The challenge is not whether to continue this transformation, but how quickly and how boldly we are prepared to move forward, creating a system where professionals can work seamlessly across care settings, where patients are empowered to manage their own health, and where data flows securely to support better health care outcomes and care decisions across our nation.