Quick summary: Patients Know Best, founded in 2008 by Dr Mohammad Al Ubaydli, has grown into one of the UK’s most significant digital health platforms, supporting more than 15 million citizens by giving them direct access to a single secure personal health record drawn from hospitals, GPs, community services, and wearables. The platform releases 22 million test results monthly across a third of England’s hospital and mental health Trusts, and is now expanding internationally, including a single record for all 20 million citizens in Lagos, Nigeria. As the UK government advances plans for a national Single Patient Record, PKB’s model points towards a healthcare system where patients are active partners in their own care, with implications for how services manage long-term conditions, reduce duplication, and coordinate across providers.
A health technology platform founded by a Cambridge-trained doctor who spent his childhood managing a rare genetic disease now supports more than 15 million citizens across the UK, with ambitions stretching across three continents.
Patients Know Best (PKB), established in 2008 by Dr Mohammad Al Ubaydli, gives patients a single secure personal health record drawing together data from hospitals, GPs, community services, wearables, and private providers. It was the first personal health record to integrate with the NHS App, and is also integrated with the NHS Wales App, allowing patients to access appointment letters, test results, and multi-disciplinary care plans in one place.
PKB operates across a third of England’s hospital and mental health Trusts, releasing 22 million test results monthly. Its granular privacy model allows patients to share all or parts of their record with family members, carers, and healthcare professionals anywhere in the world.
The origins of PKB trace back to a formative encounter. In 2007, while researching in the US, Dr Al Ubaydli met Dr Jim Jorge at Vanderbilt Medical Center. Jim had discharged a chest pain patient after a CT scan ruled out a tear in the largest artery, but had missed a radiologist’s warning about the thyroid. Because Jim was trialling a programme giving patients direct access to their records, the patient later emailed: “What is a thyroid?” By reading his own record, the patient caught the warning of an early-stage cancer. The cancer was removed. Jim subsequently began inviting every patient to review the medical record alongside him.
“The more information a patient has, the more useful they can be as active partners to their medical team,” Dr Al Ubaydli said.
The experience crystallised what Dr Al Ubaydli had understood since adolescence. Diagnosed at Great Ormond Street Hospital after missing much of his early schooling, he had spent years as a patient before a nurse named Helen taught him to self-inject at 16. That single act, he has said, transformed care from merely saving his life to giving him a life.
He returned to the UK after concluding the American system was the wrong environment to scale the vision of patient-controlled data. The NHS, with its structural interest in data sharing, offered better conditions.
PKB is a certified B Corporation. Its milestones include a regional contract in North West London in 2015, becoming the first personal health record to integrate with the NHS App in 2019, a national contract with the UK Kidney Association in 2021, and full integration with all GP practices in England by 2025.
The platform is now expanding internationally, including a single health record for all 20 million citizens in Lagos, Nigeria.
As the UK government advances plans for a national Single Patient Record, PKB’s model is gaining renewed relevance. Dr Al Ubaydli campaigns with academics and the World Health Organisation for worldwide personal health record availability, and is currently writing the second edition of Personal Health Records for Governments.