Residents of North West London are set to benefit from being part of one of the largest shared patient portal programs in the UK, with mass registrations now underway.
The Care Information Exchange (CIE) hosts the health records of up to 2.3 million people living in North West London, and is using an open platform with APIs to enable sharing across London and other parts of the UK.
Some 50,000 patients in north west London are currently being invited with over 10,000 already signed up. So far 20% of patients invited to register are signing up, with the number rising to 90% if they have test results on the system.
Powered by patient-controlled personal health record (PHR) specialist Patients Know Best, and funded by £3 million investment from Imperial Health Charity, CIE collects data from hospitals and GP practices in the area. It also connects to 15 other hospitals outside of north west London including Birmingham, Bristol, Liverpool, Manchester, Scotland and Wales.
While most hospital or GP portals tie the patient to a single institution, PKB claims CIE offers a true patient portal, enabling patients to access their health record from anywhere in the world and share it with any institution, professional or carer wherever they are.
The CIE system uses Application Programming Interfaces (APIs) to display data in context within local medical systems. The system enables hospital clinicians to see data about their patients who may also have been treated elsewhere in the country.
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.
Imperial College Healthcare NHS Trust found automated kiosk registrations led to over 3,000 patients in the first month alone with more than 70 people completing registration every day.
Kevin Jarrold, CIO 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 UK or rest of the world.”
He added: “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, CIO of the Connecting Care shared record programme in Bristol, said the model 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.”
Dr Mohammad Al-Ubaydli, founder & CEO of Patients Know Best, told Digital Health News, “Institutions funding this in the UK are doing this because of the cash savings from patients logging in to view their test result data or make an appointment .”
“In Surrey [another PKB customer] we’ve helped the trust save £4m through saved appointments by patients logging in and looking at test results instead of coming in for an appointment,” he added
“So it’s enabling the clinical transformation of patients not needing an appointment of coming into A&E in the first place, that is where the real financial and patient benefits of digital channel shift occur.”
The PKB consent model places the patient in charge of deciding who they want to share their information with.
So far, more than 10,000 patients have registered with CIE and 31% have also consented to share data for research purposes.