When the NHS trained me to save my life, I in turn saved its budgets. I experienced this as a patient with a rare disease. My research in the USA gathered evidence and practicalities of how so many people had successfully understood and managed their own health. With a debt of gratitude to all those who had helped me, I knew this work had to be sped up and scaled up.
So we founded Patients Know Best (PKB) in July 2008, the 60th anniversary of the NHS. Our mission is our name, our method is delivering data to patients. With data, each patient can make decisions and take actions. The sooner and closer treatment begins, the better the outcome and the lower the costs. No one can act sooner or closer than the patient.
As we celebrate the NHS’s 75th birthday and PKB’s 15-year milestone, the Bevan Commission conference invited me to share my hopes for the next 25 years. With great progress behind us, great challenges stand before us. We must do more, more quickly. The NHS needs us as we need it.
Patients are providers
Long term conditions mean patients are the latest and largest providers of care. The technology is here just when budgets have nowhere to go.
Doctors and laboratories initially refused home pregnancy testing as it was too difficult and dangerous. Women today routinely use this diagnostic technology. Insulin is a deadly drug. Yet millions of diabetics inject themselves with insulin, treating diabetes, which used to be a death sentence. Kidney specialists transplanted kidneys then taught patients to look after them. Today kidney patients monitor tests and administer dialysis at home.
The paternalistic model of healthcare is unsustainable. But allowing some patients to provide care is extremely scalable. Not everyone can do everything but many can do much. And we need them to. As NHS Confed CEO Matthew Taylor recently said, it’s time for a new social contract with the public, placing patients at the forefront of their own healthcare.
This is the next phase of Beveridge’s battle against the five giants of idleness, ignorance, disease, squalor and want. The NHS was created to deal with disease, it delivered life expectancy, quality and dignity. Today our problems are long-term chronic conditions which cannot be treated without engaged, activated citizens with the knowledge and tools to help themselves. .
The good news is, the technology is here and the patients are ready. In long term conditions – and long term wellness – they are the new professionals adding to our existing NHS workforce. This starts with data.
Data professionalises patients
“What’s a thyroid” asked the patient? Dr Jim Jirjis was surprised at this question from a patient with chest pain. That month Jim’s hospital, Vanderbilt University Medical Center, had started releasing data to patients. The patient had read the radiologist’s report and picked up what Jim had dropped, the “shadowing” of the thyroid that suggested a cancer in his neck.
From that point onwards Jim asked all his patients to look at their records. Jim was not unusual in making a mistake – he is human – but in how he reacted. He wanted his patients to help, to professionalise them as experts alongside him, looking at the data. His story inspired me to launch PKB.
Data is the foundation of treatment, for whoever is delivering that treatment. It is not the whole house, let alone the towering skyscraper of advanced care. But nothing can be built without this foundation. Delivering data to patients allows patients to deliver care. And receiving data from patients raises care to safer, faster levels. Discussing data means decisions are correct and committed. The patient understands what needs to be done – and why – and so does it.
When PKB patients get data, 75% look at it within 2 days and 50% within 2 hours. Patients registered to see their appointment data in PKB are 30% less likely to miss appointments. 70% of PKB users told University Hospitals Sussex NHS Foundation Trust they were already equipped to understand their results, in a 2022 survey. At Kings Medical Centre in Nottingham asthma patients are using a PKB care plan with a Peak Flow device to monitor and manage their condition at home. Patients with the Hywel Dda Orthopaedic Prehab team are using care plans to optimise their health pre surgery for better outcomes post surgery.
The pandemic showed the importance of data and again the NHS was a pioneer. While every state increased its collection of data from citizens, the UK’s NHS also increased its data release. The NHS App integration of PKB went live in February 2020, just as lockdowns began. Patients could not visit hospitals but they still had cancer and diabetes and many other life-threatening illnesses; they needed to know what was happening and what to do. Moving data, not people, was crucial to safety and care.
In many respects this is fulfilling Bevan’s ultimate vision. A founding principle of the NHS was wellness, supporting the nation to positively own their health. But ‘people-powered healthcare’ doesn’t just happen. Patients need the data and resources to understand and act on information. It’s why access to medical data via a unified personal health record is the cornerstone of our mission at PKB, and has been for 15 years.
Train your trainer
I watched my mother train my doctors on my rare disease. This was a mercy for me but a miracle for most. They had not been trained for patients as professionals.
This is why we provide PKB free of charge to educators. In 12 universities, today’s patients train tomorrow’s doctors (and nurses, midwives and pharmacists). Leicester medical school pioneered this in 2014 with volunteer patients consulting online with medical students, and the professors tracking and mentoring in PKB. 2015’s new first year students came across patients in their second year of PKB. The patients were more experienced and knowledgeable than the medical students, the opposite of what schooling and society told students. Then the pharmacy students joined, beating the medics on medications. In a friendly environment, the students learned to learn from patients and from colleagues. This is everyone’s future.
We do this work every day with practising clinicians. They all agree that patients deserve data but they never knew how to do it safely or efficiently. PKB’s clinicians guide our customers’ clinicians through the correct local configuration. Which test results should the patient see immediately, and which need a delay for discussion? NHS customers release 20 million test results to patients every month using PKB. How do you cope with patients seeing the result before you do? It’s a good thing: patients do reduce your work and they do shoulder responsibilities, they are part of the team now.
Fifteen years on our mission is no longer just a concept. As we look forward to the NHS’ centenary in 25 years, let us reflect on Bevan’s original vision and renew our commitment to carrying it forward with a world where the patient is a partner in the system. Today, we thank everyone at the NHS for their incredible dedication over the past 75 years.