National Digital Healthcare the Estonian Experience

Liis Hinsberg Shea is the former Director of Estonian Health System Communications

"Digital healthcare is already a reality in 2018 in Estonia thanks to all the e-solutions we have implemented in the past twenty years," said Estonia's Minister of Health and Labor Ms. Riina Sikkut in an interview last year.¹ Funnily enough, that statement was more newsworthy to people outside of Estonia than people living there and using e-government and e-health services on a daily basis. Estonians are very comfortable using e-services and sharing their data when necessary. Citizens are brought up with the philosophy that we own our data, however, it's both the public and private sector's job to use this data in the best way possible—to run our shared services smoothly and improve life in Estonia.

In Estonia, 95% of health data is digitized
99% of prescriptions are Digital
100% of billing is done electronically
94% of citizens are covered by national healthcare

Data travels on a digital highway

Most public records in Estonia use the government's open source data platform, the X-road or X-tee ²⁷ data platform for both public and private data. The platform links individual servers, letting information live locally, but can be requested by different participants. The public sector uses X-tee for different registries like the Population Registry, Health Insurance Registry. Private Sector companies in energy, telecom and banking use the platform. Over 900 organizations use it daily.² The main user interface for citizens, enterprises and public officials is the State Portal "eesti.ee".

Everyday services that people need are all online and necessary information or forms are pre-populated. When you vote, the e-voting platform already knows the necessary data. When you file taxes, the tax forms are filled out for you. You don’t have to insert any data more than once and there is no duplicate data.

Open Source Estonia

The main advantages of X-tee are cost efficiency, speed of innovation, and sustainability.³ Because of common infrastructure rules, schema, and deployment, engineering processes become standardized and more widely known, making on-boarding new developers more straightforward. It saves time, measurable in thousands of working hours saved doing administrative tasks2. It was designed with growth in mind so it can easily be scaled up when new e-services and platforms come online.

X-tee has been developed for over ten years, so most of the code is freely available, which significantly simplifies the creation of new solutions.⁴ X-tee code samples are available on GitHub.⁵

Citizens own their health data

When a child is born, information gets sent directly from the hospital to the population registry. From there it is sent automatically to the health insurance fund, so that the child will have health insurance and an assigned (their mother's) family physician. The parent doesn't need to submit forms or applications, the state operates in the background.

The e-health system mainly incorporates electronic health records, digital prescriptions and digital images.⁶ Providers can access the databases via X-tee using their in-house software or using a public free of charge portal.⁷ The main user interface to access EHRs and health data is called the Patient Portal⁸.

People have unlimited access to their medical history, referrals, prescriptions, dental records, health insurance, consent forms. By law, every provider you visit has to update your file.⁹ But, since health data belongs to the people, they can choose what information they want to make completely private and inaccessible to providers.

Every invoice that gets sent to the health insurance fund on behalf of the patient is accessible via the portal. Everyone sees exactly how much of taxpayer money (ie. the health insurance fund's budget) was spent on their procedures. That makes healthcare spending more transparent.

Since we own our data, we also have access to data logs which show who has been trying to request our data. Both the State and Patient Portal include data logs and you can report any suspicious activity.

Government has paved the highway. Patients have taken the steering wheel.

Right now Estonia has 10 years worth of citizens' health data, so there are country-wide discussions on how to use it for clinical decision-making processes and how to bring the data closer to patients. In 2016, only 24% of the population claimed they visit the Patient Portal.¹⁰

Today, most of the add-ons and developments for e-health registries and platforms are lead by government agencies with their private sector partners. Recent examples include a drug interactions database to alert physicians when a new drug interacts with something the patient is already taking.¹¹ In early 2019, a central registration module was added to the portal so patients can make doctor's appointments from one site.¹² By the end of 2018, 10% of the population's genetic data was collected¹³ and the government will continue their efforts to collect more. The goal is to add the data to the existing EHRs for developing a clinical decision-making tool in primary care.¹⁴

Since I've worked in the public sector in Estonia, I asked colleagues and experts from universities and tech companies to share their vision on how our e-health data should be used. Tech scientists hope that e-health databases will grant them access to further innovate and create their own solutions in addition to the government's efforts. Half of Estonians want to send health data from their phones' apps to the Patient Portal.⁹ Today, regulation exists to allow that sharing, but has yet to be implemented nationally. Experts agree that new user-friendly designs are needed to empower patients to better leverage their data.

In Estonia, for all residents...
$1.7B annual budget for all healthcare services
0.9% administrative overhead for healthcare budget
1.2MM or 94% of all Estonians and residents are covered by national healthcare
$79 is the average cost per outpatient encounter

In the United States, for residents with Medicaid and Medicare...
$1.3T²⁴ annual budget for Medicare + Medicaid healthcare services
8% Administrative overhead for HHS/CMS budget
108MM²⁵ or 33% of all US citizens and residents are covered by national healthcare
$121²⁶ is the average cost per outpatient encounter

In the United States, for residents with private insurance...
$1.2T²⁴ annual budget for private health insurance
15% administrative overhead for HHS/CMS budget
156MM²⁵ United States citizens and residents are covered by private healthcare
$160²⁶ is the average cost per outpatient encounter

Improving health outcomes and reaching across borders

Although there is still much room for innovation, healthcare workers and professionals today cannot imagine having to maintain large archives of paper-based health records. Patients don't have to carry their health data over when switching providers, data moves with them and they own it. This also means improvements in healthcare quality. Complete patient files means better continuity of care. This is a great foundation to build upon.

Drug interactions added to the prescriptions database in 2016. Every time a patient gets prescribed a new drug, the service alerts the prescriber of a potentially dangerous interaction. It saves people from 40,000 potential drug interactions each month11. Another service, E-Consultation, has improved care integration by allowing PCPs to consult with specialists to assess further treatment for their patients without sending them to an additional appointment at a hospital. 13,000 patients benefit from this each year.¹⁵

Also, easy data exchange with providers means saving costs on the payer's side. The Estonian Health Insurance Fund, which insures 94% of the population, has extremely low administrative costs at 0.9% of their 1.5 billion budget.¹⁶

On an international level, within the European Union, it's increasingly important for people to access to their health data while abroad. Cross-border flow of data is getting more attention, as Finland and Estonia have started exchanging digital prescriptions as of January 2019¹⁷. Sweden, Greece and Cyprus should follow during 2019 and more countries will join by 2020¹⁸. The X-tee itself is also implemented in Finland, Azerbaijan, Namibia and Faroe Islands.²

Two System Needs for 2020

In the background of this all, Estonia needs to ensure long-term sustainability of the healthcare system. Health spending is around 9% of GDP on average in the OECD²⁰. In Estonia it’s 6.5%²¹. To solve problems like increased demand for services or long waiting times, decision-makers are looking towards more digital innovation and increasing efficiency. However, to support digital innovation and the implementation of more digital services, we still need to guarantee more financing in the system. Both the WHO and local policy experts agree.²²²³

On the patients' side I hope to see more UX design. Our Citizen Portal was recently updated and UX experts did a great job making the portal more intuitive and easier to use. I'd like to see a similar update to the Patient Portal to increase the number of people using the portal and to really motivate people to become experts of their own data.

Liis Hinsberg Shea