East Germany’s government did not believe anonymisation was necessary when it created one of the world’s largest cancer registries (Blobel 1997). That’s because East Germany had neither private health care nor private insurance. West Germany believed anonymisation was essential, as private insurers would discriminate on funding private care. Unification meant privatisation and then anonymisation.

Today, one thing governments agree on in every political and economic system it is that the person is entitled to the record of their health. Their personal health record (PHR).

The journey to this ideal diverges again, and we studied these journeys in our new book “Personal health records for governments”. The printed first edition is available next month, and we publish it online for free on phr4gov.org. We spotted three commonalities across the countries.

Bonsai governments

With one exception, no government stores data store for more than 5 million people. Estonia may have a national database, but only because its population is under 1.4 million. Nordics trust their government who publish tax records of every citizen, but Sweden still stores medical records by province in a country of 11 million. Italy and Spain store data by regional government. The outlier is Saudi Arabia whose centralising state is building up the NPHIES medical records for a population approaching 40 million.

The government of England provides health care to a population of 57 million without regional devolution so instead it pulls on-demand from over 6,000 local primary care providers. There is no central database with identifiable records. India's federal government built a similar on-demand infrastructure across its vast population of over 1.4 billion but even the states are too enormous to have a centralised database. The power of states necessitates limits, which lead to bonsai databases.

Microcredit pioneer Muhammad Yunus mentioned bonsai trees in his Nobel Prize speech. “When you plant the best seed of the tallest tree in a flower-pot, you get a replica of the tallest tree, only inches tall. There is nothing wrong with the seed you planted, only the soil-base that is too inadequate.” Governments can grow no trees, let alone forests of data.

PHR poverty

The private sector is not growing what it can and should. The market is broken for personal health records. Governments need the innovation but do not want the innovators.

Governments need the innovation because every government’s contribution to health care funding dominates and the dominance is only increasing. Chronic conditions dominate health care spending and the dominance is only increasing. Private payers search for ways to avoid paying so governments expand their role as the payer of last resort. Covid made this clearer and faster. The only way to remain solvent in the face of increasing costs of chronic care is if some patients can deliver some care. Whether it’s the diabetic who injects themselves with insulin or the asthmatic who uses the inhaler to prevent attacks, patients are the largest providers of care. State solvency depends on empowering more people do more.

But states' software developers are not great, and states are not funding others' software developers. So non-state software developers are not receiving the investment to deliver the successes that states will depend on.

Early governments created or contracted with companies that they own. They bought exclusively from these on a cost-plus model. They bought products frozen in time and budget, improving little beyond their initial launch, and blocking all innovation from outside. Data in the Nordics, Portugal, Spain, Italy, Hungary and others are trapped in platforms that cannot scale their research and development investment across larger populations.

The Netherlands started a path to the private sector, announcing a large budget for a competitive market. It would certify companies' products for security and citizens would choose products for convenience. The government’s money would follow citizens' choices. However, most of the money went to health care providers for change management and for electronic health records vendors for compliance. The promised revenues for PHR companies were delayed, then reduced, then removed. As the government reallocates budget, many of the smaller companies ran out of cash or retreated to alternative markets.

NHS England had been down this path sooner and larger, paying for GP portal companies' offerings in 2015. After releasing the NHS App’s GP functionality in 2019, it stopped paying the private sector for record access. Instead its new funding is for self-service workflows such as booking an appointment or completing electronic triage.

India’s government has no funding for PHRs, focusing on standards and legislation. But India’s enormous population must surely offer a future market. PHR companies are experimenting with commissions for placing patients for appointments or loans for procedures.

FHIR works

From India to the Netherlands, every government is following FHIR, with the USA leading on FHIR 4. This allows different software vendors to work together. Even for vendors pursuing a vendor lock-in strategy, the momentum is too great to resist. It also allows countries to work together as the European Union’s European Health Data Space laws become practice. A citizen’s data can move between countries using the FHIR standard, another freedom of movement in the EU.

The practical adoption is a contrast to theoretical alternatives like OpenEHR. FHIR’s community of practice is giving governments and innovators confidence to commit. Almost every government’s data strategy includes migrating health care documentation to FHIR. PHR’s investors and innovators can rely on this foundation like 3G helped telecommunications, SWIFT helped banking and HTML helped the internet.

Eventually these foundations manifest as better, cheaper products for consumers. We need, and will get, these as patients.

Bibliography

Blobel 1997. Clinical record Systems in Oncology. Experiences and Developments on Cancer Registers in Eastern Germany, in 43 pp 39–56. Available at: https://www.cl.cam.ac.uk/archive/rja14/Papers/blobel.pdf (accessed 28 November 2024).

Yunus 2006. Muhammad Yunus Nobel Lecture. Available at: https://www.nobelprize.org/prizes/peace/2006/yunus/lecture/ (accessed 29 November 2024).