App puts people in charge of their test results

People can now gain access to their own NHS records using a pioneering new app and website.

WalesOnline reports the digital service, called Patients Know Best (PKB), allows people to read their test results, reschedule appointments, manage care plans and email their doctor or nurse directly for advice. People who don’t understand the technology can decide to share their health information with a relative or carer. There are also “virtual clinics” for people who don’t need to attend a hospital appointment.

Following a successful pilot, people currently attending appointments for cardiac problems, Parkinson’s disease and COPD at the Princess of Wales Hospital in Bridgend will be given access to Patients Know Best. If an extensive evaluation finds the technology successful, the service could be rolled out across the Welsh NHS.

Hamish Laing, chairman of the project board and former medical director for Abertawe Bro Morgannwg University Health Board (ABMU), said Patients Know Best has the potential to reduce waste in the Welsh NHS, cut waiting times and save money. He said “Patients Know Best is a really powerful tool for patients, to empower them to take control of their own conditions and share their information with who they want to. But it also allows the NHS to look after people differently, so instead of seeing them regularly in a clinic when they’re perhaps well, we can use the platform to let patients tell us when they need to be seen. That allows them to get on with their lives without having to take a day off work unnecessarily. At the moment we have a lot of people coming to outpatients that really don’t need to be seen. We are under a lot of pressure in hospitals, and this platform will allow us to create space in clinics.”

ABMU has been working in partnership with the Welsh Government which part-funded an early pilot of Patients Know Best at Morriston, Singleton and Neath Port Talbot Hospitals. It is the first technology to be given access behind the secure NHS network which is encrypted to stop people hacking into the system and stealing personal information.

Deborah Isidoro, from Pencoed, had a heart attack in 2016 aged forty nine and was one of the first cardiology patients offered Patients Know Best. She said “I like the way that I am now able to see my results online, so I’m better prepared ahead of an appointment. I’m able to think about the questions I want to ask ahead of speaking to my nurse. It gives me more understanding of what’s going on – it is empowering in a way. Before, I’d go into an appointment and be told about my results and it might not have been until afterwards that I’d have thought of something I’d like to have asked. Now I am much better prepared.”

When people are given access to the NHS portal, it will allow them to see some aspects of their medical records, such as blood tests, dating back five years or more.

Patients Know Best founder and CEO, Dr Mohammad Al-Ubaydli, said the idea came about as a result of a genetic immune deficiency he was diagnosed with as a child. He said due to the rarity of his condition, which stopped him from being able to have vaccinations as a child, his continuity of care was poor when moving between specialist and community hospitals. Ten years after he initially developed the idea, Patients Know Best is now being used in thirty English hospitals and has nineteen different languages.

He said “I myself have a long-term illness and need help from lots of people, all of whom care about and contribute to my health. But managing complex care is hard. I have to schedule appointments with a number of clinicians, manage my medications and co-ordinate with loved ones who participate in my care. Ten million people in the UK alone have long-term illnesses that need this kind of care, including diabetes, asthma and heart disease. Over the years, I noticed that my clinical team was relying on me to know important information. This was not because I trained as a doctor myself, but because I was the only one who turned up to all the appointments! This is how patients know best. And this is why we built this web site – to give each patient better tools to manage their health.”

Patients Know Best be offered throughout ABMU in diabetes, urology, ear nose and throat and gastroenterology from this autumn.

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