Enabling patients to take control of their own health will benefit governments in the long run, says Dr Mohammad Al-Ubaydli, CEO and Founder of Patients Know Best 

One of the biggest obstacles to successful patient care is the lack of interoperability in technology. It prevents clinicians from seeing the full case history at the point of care and can even impede treatment through inability to provide timely information. There are many innovators within the space trying to resolve this crucial issue, using the most advanced AI and digital technology.

Patients Know Best (or PKB) has taken a different route to success. As a social enterprise and technology platform, it’s designed to help health and social care providers bring together patient data, along with the patient’s own data, creating one secure Personal Health Record (PHR) for the patient.

This level of interoperability is only possible because PKB’s patients are empowered. In every country, the one party allowed to hold all the data about the patient is… the patient. PKB delivers power for patients, and delivers powerful patients to health care systems, who in turn deliver powerful outcomes: lower costs and higher safety.

After proving the concept, PKB focuses on government-scale. PKB is Europe’s largest personal health record system used by more than 100 healthcare organisations across 7 countries in 22 different languages, with more than 17.5m patient records created, and can be used by patients and clinicians anywhere in the world. It is also the first PHR to integrate with the NHS App, making it more accessible to a greater number of UK citizens. It has 4,000,000+ registered users with more than 100,000 new users every month.

As a patient-centred portal offering the highest level of digital security, patients can login to access everything from appointment letters and test results to their multi-disciplinary care plans. It enables patients to share all or parts of their record with family, carers and other healthcare professionals, anywhere in the world with open read-write APIs that integrate with their systems.

Encouraging governments to discuss the challenges

It seems an obvious solution, giving patients their own control over their health and health data. And in the spirit of social enterprise, founder and CEO Dr Mohammad Al-Ubaydli, is writing a book to encourage government understanding and cooperation around the use of PHRs. From his work in the Department of Veteran Affairs in the United States, he became aware of the extraordinary work being done by governments in the healthcare space that is often never talked about.

“As I studied different governments, I understood they face the same problem and I wanted to make it explicit in the book that they basically need this technology to happen so that each country runs better,” says Mohammed who trained as a physician at the University of Cambridge, worked as a staff scientist at the National Institutes of Health and was a management consultant to US hospitals at The Advisory Board Company.

“Healthcare encompasses 10 per cent and rising of every rich country’s GDP, and the middle income and low income countries are trying to head to that ratio as well. It is unaffordable to continue on this trajectory, so the only way to continue universal health coverage in the 21st century is if people can do some of the work for themselves.

“The state needs to look after the vulnerable, but it has to free up the resources for the vulnerable by those who have capacity to increase their capacity. Every government knows they need to do this, but they’re also stuck because they can’t build the technology and they don’t know who to trust to outsource the technology.”

In Mohammed’s opinion, it’s clear that governments should govern and do the governance while allowing private enterprise to innovate. “It’s like the automotive sector – governments build the roads and write the traffic laws, but private companies build the cars and invent electric cars,” he says. “When governments try to retain control, they lock innovations into their countries rather than allowing them to be scaled across borders. The government should be focusing on standards, on identity verification, on data ownership. But a lot of people are scared about it in government, and so they default to the lock in.”

The UK path

After several false starts, the UK approach now embraces bottom-up innovation, acknowledging that it tried to build systems in the past and failed. Allowing the private sector to take the risk and giving them the flexibility to fail is the only way to achieve success, in Mohammed’s opinion. “You need to combine that approach with the governance of the state around data ownership and identity verification,” he says. “That’s how you get the correct partnership, such as the NHS App which performs the identity verification and contains the correct governance information. The platform opens up the private sector to suggested functionality and integrates it. It’s the middle path between the Danish/Nordic system which has become very provincial and the American model which is effectively the Wild West as there is no national or state governance.”

International expansion

Currently PKB has customers in the Republic of Ireland, Germany, the Netherlands, along with pro bono deployments in Hong Kong, South Africa and the USA. In September this year Mohammad is moving to Bahrain to base himself in the Middle East as part of a global expansion that will see him reach Singapore in this phase.

“We want every individual anywhere in the world to see their own health information, exchange messages with professionals, access care plans and other resources, add their own information, connect wearable devices, track and monitor symptoms, and share their information with carers and other professionals anywhere in the world,” Mohammad says. “It will go with them from cradle to grave.”

He aims to focus on the Middle East for the next few years as part of their healthcare innovation plans. “I’m more excited about the next 15 years than I was by the previous decades because we’re finally getting to do what we wanted to do when we started. And now the tech is all there, we can do so much more than even a year ago.”

You can view Mohammad’s book‘Personal Health Records for Governments’ live at phr4gov.org

If you are interested in contributing or sharing your perspective contact book@patientsknowbest.com