A pan-Arab personal health record
- Mohammad Al-Ubaydli
In 2020 around 41.4 million people moved into or across Arab states[1]. Notably, 35% were from other Arab countries. And of 32.8 million moving on, 44% stayed in the region[2].
Moving a person without moving their health record raises the cost of health care. Doctors spend time and money recreating the record, and they can make mistakes without it.
The time is right to make this right
Saving lives saves money. This is increasingly urgent as health care costs grow faster than economies do.
Technology is now good enough and adopted enough to aim for a universal long-term solution. Starting with the Gulf, most care in most providers is documented digitally in an electronic health record. Saudi Arabia, Dubai, Abu Dhabi and Qatar already have shared care records between their providers’ records and others in the region are scaling up.
Most patients receive a copy of their data digitally. Gulf countries mandate it, having built national superapps during the Covid pandemic. These superapps include a copy of the record from across providers in a country. It is also basic customer service for providers to have patient portals to onboard customers and link them to clinical care.
Furthermore, Middle East consumers are mobile-first and global leaders in digital penetration[3]. This local strength means they are ready for universal usage of technologies that have been proven at mass scale.
What is the solution?
A personal health record (PHR) is a record about the health of a person. The record is organised around the person. It is not tied to an organisation (like a hospital portal or a primary care portal is); nor is it limited to a condition (like a disease app does); and it moves with the person (not locked down to a region).
A personal health record is the only architecture that supports the movement of data with the movement of people. This is important not just for 41 million Arab migrants - it is also important for native residents. In England, 1 in 16 people has a rare disease[4], so they move to find specialists across regions. 50% of health care spending is from 5% of the population with complex conditions, who also move between providers. The rare disease numbers are likely higher in the Arab due to consanguineous marriages. As the Arab world’s youthful population ages, the complexity and costs of care will rise.
How can we make this happen?
There are three approaches to universal movement of data with people. First is a public sector top-down approach, with governments of the Arab world agreeing to work together. This is slow and hard. An alternative is a private sector bottom-up approach. But the public sector’s laws and the private sector’s incentives are against scale. The third is the public sector enabling the private sector, which has had successes in the region. This is the recommendation.
Public sector top-down
One path forward is to follow the European Union model, with mutual recognition by Arab states of their neighbours’ infrastructure for storage. In 2022 the EU passed the European Health Data Space legislation. As a citizen moves from one country to another, the departure country’s public infrastructure passes the citizen’s data onto the destination country.
The GCC countries could lead the way in this approach through their existing practices of cooperation. At current speeds this will not be fast. Even with a political union and mature economies with cross-country wealth transfers, the European Union’s progress has been slow. It took years for mutual recognition of data storage across the EU, still more years to agree to the EU Health Data Space legislation[5], and this in turn will take years to implement. By contrast ASEAN regional cooperation does not have a political union and does not have any of these elements. The Arab world’s only free trade area is the GCC and the African Continental Free Trade Area only recently formed.
This is not an approach to rely on for public health. Bahrain and Kuwait’s mutual recognition of data storage is the tiny exception that proves the enormous rule. We see few signs of scaling or spreading.
Private sector bottom-up
The private sector has started down this path due to consumer demand. Hospital portals and apps attract paying consumers, and they expect access to data as part of routine care.
But the data is locked to the provider. Commercially, private providers do not like data portability as it allows consumers to shop around, moving to other providers.
Legally, GCC countries’ mandate in-country data storage. It is possible to have apps and portals that cross borders, storing data in each country and displaying it in one user interface on-demand. However, the behaviour of well-funded hospital chains operating in multiple countries has still been to silo storage and display by country. The providers want to avoid the regulatory risk of joining up care across markets.
Public-private cooperation led by GCC
The model of a multinational personal health record app is definitely workable. Consumer-funded companies like Livv already cater to travellers who manually upload their medical records. And government-funded companies like Patients Know Best already operate across multiple national jurisdictions.
What would allow this to scale is Arab nations cooperating with the private sector like the government of England has. England opened up identity verification, NHS login, to the private sector. It’s used by 80% of the population. UAE Pass in the UAE has already shown that Gulf governments can open up.
England’s national app, NHS App, incorporates private suppliers to deliver features from electronic consultations to online appointment booking to personal health records. No Gulf country has yet opened up its national data stores to the private sector. Doing so would make their national app offerings dynamic, especially given the competitive marketplaces in the rest of their economies, and that 50-80% of their residents are expats.
Governments do not need to fund these companies - this is simply a policy decision to allow the private sector to better serve their citizens and economies. Furthermore, as GCC countries kick-start this approach they can create national champions. The GCC countries are already standardising on FHIR 4, ICD and Snomed for their national data sets. As the personal health records market starts in these countries, the companies will be well developed when other countries join this approach. Data portability also supports the life sciences industry. The genetic diversity in the Gulf states' expatriate workforce makes it globally attractive for clinical trials.
What next?
This proposal is put forward as part of global research on personal health records conducted with my colleague, Federica Andreoni. The findings will be shared in a new book “Personal health records for governments”, set to be published in December 2024. If you would like to learn more about the research or participate in policy design, please contact book@phr4gov.org.