Mohammad Al-Ubaydli, founder of Patients Know Best, examines attitudes towards healthcare and argues that prevailing views miss an opportunity to invest in patients. Patients are not the problem, he asserts, they are the solution.
My parents were exiled from Bahrain as prodemocracy activists, so I spent my childhood in many countries. At the age of ten we arrived in the UK as my father started his PhD and continued his academic career. From my parents I learned scholarship, service and stealth.
Scholarship is the great value my family places on education. While I was completing my high school and later studying at college, both my parents were still enrolling in local colleges and studying new degrees. This passion got me studying two fields simultaneously, medicine and computing, and at medical school I spent all of my spare time writing medical software.
Service is a principle my parents taught me: that every problem I face is also faced by many other people, so I should try and generalise the solution so that the community benefits. Education allows finding these solutions, so it is a duty to make them happen to benefit others.
Stealth is about the principles of nonviolent action and civil society. Once you have a solution that empowers the powerless, the powerful will fight it. Stealth is about helping the idea survive the early fragile stage, ideally by convincing those in power to believe it is their idea, and in their interest. I was born with a genetic immune deficiency and this had many effects on me throughout my life. Until my rare condition was diagnosed and treated, at the age of 10, I was ill and away from school for much of each year. I lost most of my hearing.
I learned a lot of things from growing up in this way. I learned about the power of medicine. My wonderful doctors and nurses literally saved my life, and got me well enough that I could work in hospitals, an environment full of infections, even though my illness made me so vulnerable to them.
I also learned that none of this was possible without the patient, or more accurately in my early years, the parents. None of my doctors in the UK could understand how I had managed to survive the early years living in countries with civil war and poor medical care.
The secret was my mother, who kept meticulous records of my problems and made sure I received the right antibiotics and care. (Incidentally, she wanted PKB to be called Parents Know Best.) While in the UK, she taught each specialist what every other specialist had taught her, so that the care they delivered was coordinated and safe. Medicine continues to become more specialised, even for common diseases coordination is key, and that means the patient is key.
And I learned to learn. I was away from school often, and even while in school my deafness meant I could hear little of what was said in class. But with the right technology, I could continue. This started with new books the school was using for students to learn at their own pace, and accelerated with computers.
It frustrates me to see discussions about the digital divide miss the point – computers are a bridge, they are the equaliser for patients with disabilities, allowing us to fill in the gaps at our own pace, when we are given the chance to do so.
All too often public discourse about health care focuses on increased spending and the economic dangers of an ageing population. This view misses the miracle of increasing life spans and decreasing deaths.
Patients Know Best views patients as assets rather than liabilities. All too often public discourse about health care focuses on increased spending and the economic dangers of an ageing population. This view misses the miracle of increasing life spans and decreasing deaths. They also miss the opportunity of investing in the patient: new technology allows self-assessment and self-management. Patients are not the problem, they are the solution.
Not only is this the only scalable solution, it is also a really good one. Patients Know Best is the first company to successfully make this solution work on the ground. A lot is required because health care systems are so complex and because they have been organised around institutions rather than patients. So you have to please all stakeholders in the short term, as well as the long-term.
In other words in the short term, every one of our customers – hospitals, charities, concierge medicine providers, pharmaceutical companies and commissioning groups – either saves money or makes money from putting patients in control. As each increases the scale of their deployments, putting more patients in control, the quantitative financial improvements become structural improvements in providing low cost and high quality health care.
This is why local governments are approaching us about putting all their citizens in control of their records. Being a social enterprise is a key part of the trust that these local governments can place in us. Previous commercial efforts failed because the businesses were either intent on selling patients’ data, or it was not clear how they could prevented from doing so in the future. With such players there could be no trust in sharing data, and if no data are shared high cost low quality health care is the result.
PKB’s software was built with patient-level encryption from day one. Technologically this is extremely difficult, but it meant that we could earily prove that the company could never sell the data, because we could never even access the data. Only the patient and the people the patient chooses could use the data. With the patient in control, trust is possible, sharing happens, costs go down and quality goes up. Every PKB customer is a change maker. Each champion who initiated the purchase has had to convince their colleagues and institution of the value of putting patients in control.
And each did so because they personally wanted to improve health care for their patients. We call their efforts a “noble conspiracy”, as these champions quietly fight for their patients. I always find it interesting to speak to new customers. Great Ormond Street Hospital’s Dr Susan Hill, the first doctor who used PKB had spent five years asking her different suppliers to provide a way to give patients a copy of the medical record to increase safety.
As she spoke to me I could see that she genuinely cared about the safety of the children she was looking after, and frustrated that no one else had helped them. But once she started using the software, she convinced her team to also use it, and then her team convinced clinicians across the UK, continental Europe and the Middle East to also use it.
One of these was Dr Simon Gabe, already a change maker at St Mark’s Hospital, who explained to BBC Radio 4 the importance of putting patients in control. Thalidomide Trust’s management team had spent seven years working with different providers to assemble a system to hold the records of their beneficiaries, 500 patients with a rare medical condition. Once they started working with PKB, they campaigned for patients to be in control, and for local clinicians to work with their patients in this way. Torbay Hospital has been a pioneer in integrated care.
Their IT Director, Gary Hotine, has consistently facilitated patient-centered innovations. He documented the security that meant that Torbay Hospital was the first in the UK to use Skype video for online consultations with patients. We share these stories with all our other customers so that they learn from each other and with each other. Whenever we add a new feature, like providing patients with all their lab results, the local institutions’ response is a series of speedily-articulated but usually incorrect reasons why the innovation cannot be used.
But we help our customers as change makers by telling them who else has already deployed the feature. As soon as an organisation hears that another has already been deployed, opposition melts away, and local adoption begins. We are reaching the critical mass of patients as change makers. So far they have been hobbled by the lack of access to information, unable to understand their health because they are unable to view their health record.
But once enough of them see and understand their records, they will work together to create citizen services of patients helping each other understand and improve their health. At PKB, we call this a Lutheran revolution, a reformation for health care.
This is why we translate the medical record from its Latin jargon to the local language of the patient. It is why we put the patient in control. It is how patients know best. Patient control is a democratic issue to me. It does have tangible benefits of reducing costs and raising quality just as democratic countries’ economies are wealthier and more efficient. But we pursue democracy for principle not profit: the principle that citizens must be in control.
And so it is with patient control – the reason each PKB employee goes to work every day is to put patients in control. 2013 is already shaping up to be an amazing year for us with customers and deployments in the USA and Netherlands. We told our developers in the beginning that they should build our software for 7 billion people.
We are well on the way to putting every citizen in control of their health care.