London Health & Care Information Exchange

Over the past few months DigitalHealth.London has been pleased to work with the Digital team from the Healthy London Partnership (HLP), who are behind the London Health & Care Information Exchange.

It’s a really exciting project with huge potential to transform health and care information sharing across the capital, creating a safe, scalable way of moving patient data between the multiple health and care agencies involved in patient care, with resultant positive impacts on patients, staff burden, decision making and planning.

Matt Rigby provides an update:

Healthy London Partnership and DigitalHealth.London have something of a shared history, both having our roots in the Mayor’s London Health Commission’s Better Health for London report of 2015, which recommended the creation of a digital health hub for the capital alongside the development of a shared plan for all NHS stakeholders.

A key interest for DigitalHealth.London currently is HLP’s development of the London Health & Care Information Exchange, which will provide clinicians and patients themselves with secure access to real-time patient records and information. Clinicians in A&Es, hospitals, GP practices and mental health and community care trusts across London will be able to securely exchange information and update records.

It’s worth mentioning that this is no mean feat.

Many healthcare systems talk different languages at the moment. One way to get them to talk to each other is to get every system to learn every other system’s language, but this is incredibly difficult and time-consuming. Not to mention expensive. Instead, what the team behind the Information Exchange is trying to do is get them all to talk a single language. But even when all the systems are talking the same language, we still need the right permissions in place to share information across London. To address this challenge the team want to see each patient having access to an online account through which they can see which organisations hold their records, set preferences and grant information sharing permissions to others – eg their carers.   

Information sharing on the scale of London has never been done before. By very definition innovation doesn’t follow a prescribed route, and this has certainly been evident during the development to date of the Information Exchange, where I’ve seen the team confront unexpected challenges with novel solutions and (where necessary) changes in approach. So it’s work in progress with great potential, and as of April 2017 here are some noteworthy initiatives:

The data controller console (DCC) is a new online system that aims to make it easier and more efficient for NHS organisations in London to store, update and track the status of information sharing agreements (ISAs). ISAs are the documents the NHS uses to manage how information is shared between organisations and to ensure that it is kept safe. It is therefore a fundamental component of the London Health and Care Information Exchange.  The DCC will be further developed to facilitate use by social care organisations as well.

The DCC has recently been launched in North West London and North East London, where organisations have been registered on the new system, together with their contact details. ISAs are being uploaded and requests issued for other organisations to accept ISAs.  User training continues and deployment planning in progress for further cohorts of organisations and users to join the DCC.

The key benefits of DCC are:

• Improved efficiency, management and communication of ISAs, supporting automated processes and paper light working
• Decreased number of agreements through visibility and ability to rationalise, reuse and standardise agreements
• Improved sharing capability to support patient care across multiple organisations

The Cancer Document Exchange Project is working with leaders in cancer care to improve how information is shared within local cancer networks and between clinicians across London, using the London Health and Care Information Exchange to do this. Improved information sharing will mean clinicians have all the information they need, when they need it, leading to shorter waits for diagnosis and treatment for cancer patients.

We will be delivering information sharing improvements in phases.  Each phase will involve working closely with clinical and administrative teams to ensure we are delivering what the teams need to improve cancer care.  The first phase was a testing phase focused on moving a select set of key documents between a small number of health care organisations.

Following the successful delivery of the first phase, we’ve gone back to the teams to plan how to deliver increased capabilities to address their challenges.  Sharing additional key cancer documents and notifying administrators and clinicians when information is available is the focus of the next phase, along with a move from test data to live data.

The End of Life Care Co-Ordination Project aims to improve on end of life patient experience, increasing the number of patients dying in their preferred place of death. A knock-on benefit of this will be reduced admissions to hospitals for end of life patients, freeing up ambulance and hospital capacity.

By autumn this year the team will have delivered a pilot, allowing clinicians to view real-time digital end of life care plans, viewable in their own systems, existing local information exchange or London Health and Care Information Exchange.

The project is of particular note to the technology community as it will provide one of the first uses of the Fast Healthcare Interoperability Resource (FHIR) standard as the mechanism used to ‘exchange’ structured data.  FHIR is destined to be one of the key standards that will over time lead to ubiquitous data sharing.

The Transfers of Care Project is working to facilitate information sharing to support continuity of care, ensure that patients are cared for in the most appropriate care setting and reducing delayed transfers of care. The project team is focusing on transfers of care for stroke, major trauma, cardiology and neurology for the next two years. By September this year two Trusts in North West London will be sharing both digital repatriation forms and discharge summaries with each other via the Information Exchange.  

We’re looking forward to following the Information Exchange as the project develops over coming months, and will keep DigitalHealth.London stakeholders updated on progress and opportunities.