A celebration of progress in shared care records

Ashley Hannah, Programme Director for Shared Care Records at NHSX, reflects on the enormous progress across the country in delivering shared care records and the next steps for the programme.

Having a shared care record means that an oncologist treating a patient for cancer in Leeds can see the same information as a GP in Rotherham, enabling them to work better together. It allows a young person with learning disabilities or poor mental health to have their wider care needs known and respected when admitted to an acute hospital. A shared care record is an essential foundation to delivering safe, personalised and seamless care.

Our draft strategy ‘Data Saves Lives: reshaping health and care with data’ reaffirms our commitment towards a world where every doctor, GP, district nurse, and carer could draw information from, or put information into the same shared care record for any single person.

It is a simple vision. But delivering it has challenged the whole health and care system for well over a decade. Digitising paper records, recording data in a consistent way and putting in place the right systems so that data can be shared across organisational boundaries has been an enormous undertaking. The implementation of a shared care record requires more than just technical solutions; behind every successful implementation is a vast amount of engagement with staff and local people to get the solution right for them and to enable the necessary changes in culture and practice.

Our Shared Care Record programme officially began in April 2021 building on the work of the Local Health and Care Records (LHCR) programme. Established three years ago, LHCR supported regional projects pioneering the best ways to share health and care records for safe, joined up and coordinated individual care. The programme captured critical core learnings from different localities and shared these across the country, as well as developing some common standards to protect patient information, enable joined-up working across regions, and build public trust.

The newer Shared Care Record programme was designed to renew our focus on getting the fundamentals right. We wanted to ensure that the whole country had the right foundations in place; to ‘level up’ before we build upwards and explore the full potential of working in a data driven and digitally integrated way. We set the challenge that by the end of September 2021 integrated care systems (ICSs) across the country would have a basic shared record in place, striving to achieve what we have termed the ‘Minimum Viable Solution 1.0’ (MVS 1.0). This means assessment against a number of metrics and criteria, including connectivity between GP and NHS Trusts (including mental health and community trusts), the robustness and realism of delivery plans, and use of the Health Systems Support Framework (HSSF) framework to ensure future interoperability.

In normal circumstances, this target would be demanding and the past year has been anything but normal. In addition to the pandemic second wave, NHS organisations have also had to balance many competing priorities, not least working to recover services and deal with a backlog for non-COVID treatment. And yet, despite these challenges, ICSs have made great strides forward.

When we started the programme in April, 68% of ICSs in England had a basic shared care record in place. Six months on, the figure is now 88%, which is all but 5 of the ICSs. Many localities have already gone beyond the MVS 1.0 specification. Two of the remaining five ICSs are on track to achieve MVS 1.0 by the end of the financial year and we are working closely with the final three remaining ICSs to provide bespoke packages of support, including funding.

Local teams should be incredibly proud of how far they have come together and of their individual successes. We continue to benefit from shared learnings; not least that success depends on taking our staff and the public with us. Localities implementing ShCRs (including YHCR, Dorset and OneLondon) have undertaken extensive engagement to make sure the public is supportive and clear about how their information is used. When our data strategy for health and care is published in final form later this year, it will set out in more detail how we will continue to build public trust and support for better use of data across the system, guided by local learning and the high ethical, moral and social values that underpin our NHS and care system.

So, as we reach out to grab hold of our first major milestone, what will be next for Shared Care Records?

Our national programme will support ICSs to develop their ShCRs to bring in other care settings (such as social care, hospices, pharmacies, dentists and optometrists) over the next few years. This will ensure truly seamless care for individuals as they interact with multiple different services in their local area.

We will then build towards connectivity and interoperability between ICSs, resulting in a shared care record that works across the country. People don’t stay in one place - they travel for work and for pleasure and they expect the same quality of care wherever they go.

We will continue to explore how we can best use data from shared care records to improve the health and wellbeing of local populations, to tailor our services and to ensure our national policies meet the needs of those they are designed to protect and support. There is already great work being pioneered across the country in this respect and there are many examples I could give, but for brevity I will focus on just two here.

Firstly, the Yorkshire and Humber Care Record (YHCR), which brings together 74 organisations, including 22 acute trusts and 700+ GP practices. The YHCR stores all patient data across the region in a cloud-based platform which protects sensitive data from access or misuse. It allows healthcare analysts to understand their population’s needs and plan services accordingly. With 5.8 million people covered by the YHCR, modelling using the data is giving insights into unique population demographics, preferences and health issues, all of which demand different approaches to how and where care is delivered.

Secondly, the Dorset Care Record (DCR) which brings together Dorset’s acute hospitals, two local authorities, community and mental health providers and GPs. Three years after accepting its first demographic information, the DCR will soon pilot its patient health record “myDCR”. This will enable people in Dorset to view their record, record and monitor health goals and actions, share data with health and social care professionals and receive clinic letters from hospitals about discharge information and appointments.

There is much more to do, but we have collectively proven how much we can achieve by working together and there is no doubt that we have the focus and determination to keep going. We will keep you updated with our progress.