The largest shared patient portal program in the UK

Residents across North West London are benefitting from being part of the largest shared patient portal program in the UK.

The Care Information Exchange (CIE) hosts the health records of up to 2.3 million people living in North West London.

Powered by Patients Know Best and funded by £3 million investment from Imperial Health Charity, CIE collects data from hospitals and GP practices in the area, and 15 other hospitals outside of North West London including Birmingham, Bristol, Liverpool, Manchester, Scotland and Wales. By using an Application Programming Interface (API) to display data in local medical systems, it enables hospital clinicians to see data about their patients who may also have been treated elsewhere in the country.

Unlike the hospital or GP portals which tie the patient to a single institution, CIE is a true patient portal. It means patients can access their health record from anywhere in the world, and share it with any institution, professional or carer wherever they are.

For patients like Paul who was diagnosed with HIV, CIE is helping him to stay informed and take control of his care. He said: “I’m treated for my HIV in Chelsea and Westminster, other conditions across London, and my GP in Wandsworth. So, really, I am the central repository of all the global information about me. I once took my iPad to Guy’s Hospital for a consultation there. I was just about to be sent off for a whole raft of blood tests so I said: “Well, actually, you can see my results on here.” The clinician took my iPad and I think the only words she then said to me in the next 10 minutes was, “this is fantastic!”

With the introduction of mass registration, people can now sign up to access their health record at scale and with speed in a number of ways; either by speaking to a member of staff; by using the kiosk check-in screen commonly found in waiting rooms during their outpatient appointment; or by letter of invitation to their home.

This approach is proving to be a great success at Imperial College Healthcare NHS Trust where kiosk registration has signed up over 3,000 patients in the first month alone with more than 70 people completing registration every day. As the process is automated, it means no staff time is taken up to verify the identity of patients.

At another trust, patients automatically receive customised letters at home. Here, PKB has seen a 25% conversion rate from these postal invitations.

Kevin Jarrold, Chief Information Officer at Imperial College Healthcare NHS Trust and Chelsea & Westminster NHS Foundation Trust, added: “We designed CIE so the data follows the patient wherever they are in the world. Our clinicians look after NHS patients from all over the UK in their national centres of excellence and with patients from London changing residence much more than the rest of the UK, it was important for us to choose a patient portal that allows patients to share data with any provider, and with open read-write APIs to integrate with their systems.”

Andy Kinnear, Chief Information Officer from Connecting Care – a similar program developed in Bristol, is particularly supportive of this model as it allows patients who travel between Bristol and North West London for tertiary care to easily share their data. He said: “It’s great that all data is truly available to the NHS via open APIs. But more than that, there is a consent layer that allows patients to express their preference on being contacted, taking part in research and sharing with friends and family that actually care for them. We have already had professionals in Bristol access data from London, and vice-versa.”

So far, more than 10,000 patients have registered with CIE and 31% have consented to share data for research purposes.

A further 50,000 residents will be invited to register for their CIE account in North West London in the coming weeks. Registration is simple and can be completed using an email address and mobile phone number to support the verification process.

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