Unlocking health data through citizen mediated sharing

Dr Mohammad Al-Ubaydli

1 day ago

Patients Know Best digital interface dashboard displaying the highlighted Sharing tile alongside health, treatments, and messaging features for citizen-mediated data sharing.

I started at medical school the year Medscape.com started, 1995. Medscape was a journal and search engine for doctors. As I completed my first year of study, 30% of Medscape’s usage was from people who never had any formal clinical education. It was patients themselves, or people looking after their loved ones. Dr Lundberg, editor-in-chief of the Journal of the American Medical Association, railed against the “‘wild wild west’ of the medical internet”¹. Medscape responded by opening up to these users. As I neared graduation in 1999, Dr Lundberg became the editor-in-chief of Medscape.

In 2026, one in four adults regularly consults artificial intelligence chatbots for health advice, using tools like ChatGPT or Gemini to research symptoms long before or after seeing a doctor. The world is full of clinicians’ warnings about patients’ access to these tools. The only path forward is working with patients. Eventually all will understand what Dr Lundberg understood – attempts by the medical profession to block patients’ access to clinicians’ knowledge will fail, while clinicians who accelerate sharing their knowledge with patients will help patients, professionals and society.

Because healthcare systems remain built on a decades old assumption that organisations come first. Hospitals and health services own data and knowledge, store it in isolated databases and specialities, and occasionally pass fragments between themselves.

In 2008, we founded PKB on a different approach. We knew what every patient knew: the patient is the only person present across every single health interaction. A patient moves between family doctors, hospital trusts, mental health services, pharmacies, private specialists, and care homes. They travel abroad, track their vitals on devices, and manage their routine at home. No hospital or government department sits at the centre of that journey. Only the individual does. Only the individual can. And of course, no one cares more about the patient than the patient, and their loved ones, do.

To open up data silos, you cannot simply build bigger pipes or stores between institutions. You must give the keys to the citizen. There is no alternative (except denial). When individuals own their record, they solve the integration problem at its root. The patient becomes the bridge. Philosophically, this is built on a model understood as citizen mediated data sharing.

Why citizens want to engage and share now

Eighteen years ago, the patient-centric approach was met with deep skepticism. “It cannot be done”, many said. “It should not be done”, they said when it was done. “I don’t want it done”, they never said out loud. Critics argued that medical records were too complex for non clinicians, or that citizens could not handle access to their own medical information.

Today, patient access to records is an established moral principle. The widespread adoption of the NHS App is a clear signifier that people want direct access to their medical data.

The next step, a patient-led model for sharing that data, still has resistance. Healthcare leaders and governments are understandably anxious about data security, privacy, and system wide access. Yet placing trust in the citizen is the safest way forward. Governments – including well-meaning ones – cannot make the decision for who the citizen can trust, only the citizen can. Two converging forces make resolving this sharing model urgent.

Digital tools and AI

People no longer just wait for a doctor’s consultation, especially as they often cannot get one. They actively manage their health in real time. UK adults regularly consult artificial intelligence tools like ChatGPT or Gemini first for health guidance before speaking to a doctor. This puts artificial intelligence on par with asking friends and family.

But for many people, the labour of giving a full, accurate medical history to a digital app is crushing. The sicker you are, the greater the need for help, yet the greater the burden. And without the right data, algorithms cannot give the right answer.

People want to share their data with these tools to get safe, personalised advice. Public demand has passed system readiness.

Focus on prevention

Like many countries worldwide, health systems are buckling under pressure. The goals of NHS England’s 10 Year Health Plan for England ² are to: move from analogue to digital, from hospital to community, and importantly from reactive treatment to proactive prevention.

Prevention cannot happen inside a hospital ward after someone falls ill. It happens in daily life. To keep people healthy, systems work with citizens early, exchanging data and knowledge. People must be able to share health information easily with community teams, preventative digital services, and lifestyle applications. This is as true in England as it is globally.

The flaw in central databases

In trying to solve the problem of fragmentation, governments default to centralisation Our book – Personal Health Records for Governments – studied 16 national governments and showed the limits of this approach. Governments end up only aggregating the data for care that they finance, missing out on privately-funded care. They do not know the clinical governance of data from patients, so they ignore it. And democratic societies cannot accept large government databases so they are left with small regional databases. Fragmentation due to focusing on the government, not the citizen.

Governments can avoid these limits if the citizen holds the keys. When individuals control their data, they can collect information from anywhere– public or private, hospital or home – and send it anywhere. The citizen integrates the system, integration delivers the care.

When citizens hold the keys, the record changes from a static archive into an active ecosystem.

Proof at scale

One of the first patients to receive his test results said it was the first time he felt safe enough to go on holiday. Before 2012 he had stayed close to his London specialist hospital. I did think his choice of Australia as his first holiday destination was braver than mine. But he was certainly right that having his full records made emergency care safer anywhere in the world.

Since those early days, PKB’s single patient record is now operating at national scale. This week we hit 8 million registered users who directly control their records. 33 million test results delivered every month directly to individuals, up from 20 million last year. 30 percent of users log in every month, up from 24% last year even as we now reach more mainstream users

People do not let their records sit idle. They use them to coordinate care across multiple hospital trusts, monitor long term conditions at home, and share clinical histories with carers and family members.

The argument that patients cannot or will not use their health records has been thoroughly disproved by real world usage of PKB. We already see strong early results across three key areas:

Faster medical research

Clinical trial recruitment is notoriously slow. This is bad for patient care in general, and for UK PLC in particular. The UK’s globally strong life sciences industry was uniquely weakened after Covid. Because PKB combines coded data, we can show patients personalised information on suitable trials they might be eligible for. Instead of forcing a patient to manually search through registries, relevant opportunities automatically surface directly in their record.

Crucially patients then choose whether to not to share their verified record directly with research teams. Only the patient shares their information.

Early data shows this approach speeds up recruitment as well as opening access to diverse groups of patients.

Testing at home

The UK and Canada were first in the world to allow home pregnancy testing³ in 1971. The British Medical Association objected, saying women and pharmacists were not qualified to interpret the results⁴. Meanwhile, many family doctors refused to test healthy married women (the “curiosity cases”), and many young unmarried women (“social cases”) were reluctant to go to the family doctor. Women performed 1.5 million pregnancy tests at home in the UK that first year. In 1986 OMRON showed that people measuring their blood pressure at home were not only accurate, they were more accurate than doctors in clinic⁵. Not only does home measurement avoid falsely high readings from the artificial environment of the clinic, they can also be done far more frequently. And frequency was the biggest contributor to accuracy.

Today, citizens have more accurate sensors at home for more frequent measurements than ever before. Home measurements will massively grow in number but also in importance. PocDoc is already sending medical-grade cholesterol test results from a pin-prick at home into the PKB record to share with clinicians. And Holly Health is measuring changes in healthy habits.

When the patient controls the data flow, test results go straight into their main PKB record. They become available to NHS teams instantly without needing complex hospital IT projects.

Connecting care and wellbeing

Ultimately prevention requires connecting clinical data with daily wellness tracking. Because the citizen directs the data, they can connect their record with digital health coaches, lifestyle apps, and wearable devices. This gives both the citizen and their care team a complete view of health, combining long term lab results with daily measurements.

This model is not unproven. As early as 2020, Milton Keynes University Hospital⁶ recognised the promise of putting information into the hands of the patient, pioneering direct connections with platforms like Apple Health.

The way forward

Sixteen years after introducing patient owned records, the debate over whether citizens should access their medical data is accepted, though it still needs consistent application. We see the value every day at PKB.

How data is shared across the world still causes worry. Yet the public has already made its choice. People are using digital tools, home testing, and artificial intelligence to direct their care.

The choice facing health leaders and policymakers is clear. Governments are understandably nervous about system wide access and data security. Placing trust in the citizen and adopting citizen led data sharing as standard infrastructure is the safest way forward. Put the keys of choice directly into the hands of the individual.

By empowering the citizen as the primary integrator, health systems bridge the gap between hospital care, research, and prevention.