Mohammad Al-Ubaydli, CEO of Patients Know Best, shares his insights around the importance of personal health records for sustainable healthcare systems
“East Germany’s government did not believe anonymisation was necessary when it created one of the world’s largest cancer registries (Blobel 1997) because East Germany had neither private healthcare 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, all governments in every political and economic system agree that an individual is entitled to the record of their health – their personal health record (PHR).
The journey to this ideal diverges again, and we have studied these journeys in our new book “Personal Health Records for Governments”. The printed first edition is now available and is also online for free on phr4gov.org.
Bonsai governments
Bangladeshi microcredit pioneer, economist and politician Muhammad Yunus mentioned bonsai trees in his 2006 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. With one exception below, no government stores data for more than 5m people. The power of states necessitates limits, which lead to bonsai databases. We spotted three commonalities across the countries we studied:
• Estonia may have a national database, but its nation is under 1.4m.
• Nordics trust their government who publish tax records of every citizen, but Sweden still stores medical records by province in a country of 11m.
• Italy and Spain store data by regional government.
• The government of England provides healthcare to a population of 58m without regional devolution, so instead it pulls data on-demand from more than 6,000 local primary care providers. There is currently 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 outlier is Saudi Arabia whose centralising state is building up the NPHIES (National Platform for Health and Insurance Exchange Services) medical records for a population approaching 40m.
PHR poverty
The market is broken for personal health records (PHRs). Private participation is reduced and governments do not want the innovators. Yet governments need innovation because every government’s contribution to healthcare funding is increasing and chronic conditions are dominating healthcare spending. Private payors search for ways to avoid paying, so governments expand their role as the payor of last resort. The COVID-19 pandemic not only revealed this reality; it accelerated it.
Thus, it is self-evident that the only way for governments to remain solvent in the face of increasing costs of chronic care is if some patients can deliver their own care. Whether it’s the diabetic who injects themselves with insulin or the asthmatic who uses the inhaler to prevent attacks, patients are in fact the largest providers of care. State solvency depends on empowering more people to do more.
But government software developers are not effective, and states do not fund other software developers. So non-state software developers are not receiving the investment to deliver the successes that governments will depend on.
Many governments created or contracted with companies that they own: they bought exclusively from these firms on a cost-plus model, 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 is 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 healthcare 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 have run out of cash or retreated to alternative markets.
NHS England went down this path sooner to a much greater extent, 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 or Fast Healthcare Interoperability Resources
From India to the Netherlands, every government is following FHIR, with the USA leading on FHIR 4, a standard set of rules and specifications for the secure exchange of electronic health care data. This standard 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, an open standard specification for health records. 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 investors and innovators can rely on this foundation, similar to the way in which 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.”
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