“Twenty percent of Estonians will have used our DNA analysis service by the end of this year and know which diseases they are susceptible to and how they can take appropriate precautions.”
Kersti Kaljulaid, Former President, Estonia – Interview in Der Spiegel
Last week I received a book recommendation based on my previous reading on my Kindle device. The title was: The Year in Tech 2022: The Insights You Need from Harvard Business Review. I immediately purchased and downloaded it. Chapter three caught my eye – Want to See the Future of Digital Health Tools? Look to Germany. The chapter summarizes an online HBR article published the previous year (more on Germany later). And it got me thinking about whether there might be additional lessons to be learned from other countries as well. So, I set off to do some research. It turns out we can learn a lot.
The lead quote for this post, from the former President of Estonia, was a real eye-opener for me from a country we rarely discuss. Imagine a country where citizens will have their genetic profiles integrated into the digital health system with individual risk scores and pharmacogenomic information. When they go to the doctor, they will get fully personalized, genetic risk-based diagnosis, medication, and preventive measures. Estonians are very comfortable using e-services and sharing their data when necessary. Citizens are brought up with the philosophy that they own their data. However, it’s both the public and private sector’s job to use this data in the best way possible—to run their shared services smoothly and improve life in Estonia. Some essential facts:
- 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
They started to build their digital health system 20 years ago, and within the next few years, the Baltic country will reap the benefits of a transparent, blockchain-based, digital health system hooked on genetic data. The first fully digitized republic certainly sets the direction for other countries to follow. How have they done it? During the last twenty years, project e-Estonia has wired up the entire Baltic nation. The specific services that the government is involved with, legislation, voting, education, justice, banking, taxes, policing, and, naturally, healthcare, have been digitally linked across one platform, X-Road. Citizens can vote through their laptops, sign contracts with their digital signature, or use their chip-IDs when surfing around in the business and land registry – knowing that their data is secured through the blockchain and open to everyone. By having 78.1 percent of public bureaucracy digitized, the country also saves around 2 percent of its gross domestic product. For a deeper dive into the Estonian digital health experience, check out this excellent post from Dr. Bertalan Mesko and his team at The Medical Futurist Institute.
Next, let’s look at Finland, which ranks among the three strongest health technology economies globally. For centuries Finland has been collecting data precisely. And they also have been working for a long time to have their health and social care data digitized and harmonized. Finland has the National Data Exchange Layer, the equivalent of the Estonian X-road (starting to see a pattern here?). The interesting thing about this is that data can be exchanged, even between these two countries. They also have Kanta/My Kanta for Health data. These services are widely used by patients, even though they are relatively new. The system grants access to all healthcare information that the public system has about the person enquiring. People can renew electronic prescriptions, view records related to their treatment, store their living wills and organ donation testament, and consent to or refuse the disclosure of their personal data.
How about Denmark. The world’s third happiest country has one of the most advanced digital health systems alongside an elaborate and concise national digital health strategy for the next four years. The document emphasizes the importance of the cooperation of every healthcare actor through the easiest and fastest way, technology, with a clear purpose: to build an integrated network focusing on patients and looking at the person as a whole, not just at the individual diagnosis. Information on causes of death has been collected since 1875, and cancer incidence has been registered for the whole country since 1943. The Danish National Patient Registry has been keeping records that date 30-40 years back, making it one of the oldest nationwide hospital registries globally.
Another area where Denmark invests heavily is genomics-powered precision medicine – and things are moving fast. The Danish parliament adopted the law to establish the National Genome Center in 2018, and they built up their dedicated supercomputing infrastructure in 2019, began large-scale whole-genome sequencing to build up their accompanying genome database in July of that year. They believe that within the next five years, they will at least do 60,000 whole-genome sequences – at a minimum. Once again, The Medical Futurist Institute gives us a deeper understanding of the situation in Denmark in this post.
The health system in Sweden is founded on the principles of equal access and regional autonomy. Sweden recently updated its national eHealth vision, which now states that, by 2020, all residents aged 16 or over should have access to all health-related information documented in county-funded health and dental care. Two things enable this; a national patient portal and a national health information exchange platform. Although the county councils are autonomous and can prioritize which eHealth services to focus on, the decision was made at a national level that patients should only have one way to reach healthcare. A national patient portal, ‘1177.se’, is available for anyone seeking healthcare or health-related information in Sweden.
Sweden has chosen to implement a national Health Information Exchange (HIE) platform to facilitate the communication between different health information systems and eHealth services. The national HIE platform enables a single point of connectivity for client applications, making all Swedish EHRs appear like a national, virtual EHR. And citizens are responding. Preliminary results of a national patient survey among PAEHR users in Sweden indicate that the overwhelming majority of patients who have accessed the PAEHR are positive about it. Almost 90% of respondents completely agreed, and 8% partly agreed with the statement, “Having access to ‘Journalen’ is good for me.”
Now back to Germany – In late 2019, Germany’s parliament passed the Digital Health Care Act (Digitale-Versorgung-Gesetz, or DVG) — an ambitious law designed to catalyze the digital transformation of the German health care system, which has historically been a laggard in that area among peer countries. The timely introduction of the DVG means that Germany is poised to set an example for other countries in seeing what works (and what does not) in the adoption and diffusion of digital technologies for improving patient outcomes.
Perhaps the DVG’s most important provisions are its formalization of “prescribable applications” (Digitale Gesundheitsanwendungen, or DiGA), which include standard software, SaaS, and mobile as well as browser-based apps, and the creation of the Fast-Track Process, an accelerated regulatory path for companies to take their digital health applications to market. Following a streamlined review, an app can be added to a central registry of apps that can be prescribed by physicians and psychotherapists and will be reimbursed by all of Germany’s statutory health insurance providers, which cover 90% of the population of roughly 73 million individuals. The Fast-Track Process is run by the Federal Institute for Drugs and Medical Devices (Bundesinstitut für Arzneimittel und Medizinprodukte, or BfArM), which plays many of the same roles in Germany that the FDA does in the United States); BfArM also maintains the DiGA registry. The first five apps have already been added to the registry and offer support for patients to manage conditions including tinnitus, obesity, agoraphobia, osteoarthritis, and insomnia.
DVG promises to provide a standard care environment for manufacturers of new digital health tools to evaluate pricing strategies and understand how digital health applications fit into health care practice and patients’ everyday routines. The importance of such a major country mandating that all insurers have to pay for digital health apps is hard to overstate. With at least 50 apps currently already in the Fast-Track process and hundreds expected over the coming years from manufacturers worldwide, evaluation studies will create a wealth of data on how digital tools for remote patient care work in practice, which other payers and health systems can learn from. They will also be valuable in convincing health care providers — for whom evidence is of paramount importance — of the value of digital tools, both generally and in particular use cases.
Here’s a recently published update on the German DiGA journey with data through November, 2021.
So what can we learn from these examples? – There are several common elements to these national digital health programs that we could benefit from. But, and this is a crucial challenge, we would have to make major structural, payment, regulatory and legislative changes to how we currently operate. Here are my three major observations:
Interoperability is essential – Whether it’s X-Road in Estonia, My Kanta for Health in Finland, the National Patient Registry in Denmark, or 1177.se in Sweden, the data is interoperable and accessible across all sites of care, and in some instances, across country borders. Contrast that with our experience. Ask the question: “What have the American people gotten for their $35 billion HITECH investment?” The answer is not much. Silos abound. Compiling a single, comprehensive patient record is impossible. We have no national patient identifier to prevent mixing patient records. Cybersecurity is dismal at best. All of this is in a country that spends more than 17% of GDP on health care and has an administrative overhead estimated to be over 8%.
Patients own their health and genetic data – Most citizens in the countries discussed above are brought up with the idea that they own their data, can control who has access to it and for how long. In those countries that are doing genetic profiles of their citizens, the patient controls the information and its use – in some instances, using blockchain technology to maintain security and authorization of access. Here, the accepted norm is that your provider “owns” your data. And although you can request a copy of your patient records, you’ll likely be charged for the privilege and will either receive the information in paper form on a disk that is of little use. While patient data advocates like Dave deBronkart Jr, widely known as e-Patient Dave, a cancer patient, and blogger who, in 2009, became a noted activist for healthcare transformation through participatory medicine and personal health data rights, and others push for this, progress is slow.
“Owning a copy of your personal data does not change property law, medical record requirements, or hinder the advancement of science. But it does build health equity by giving everyone equal access to their lifetime medical data.”
Juhan Sonin, Annie Lakey Becker and Kim Nipp, Stat First Opinion, November 15, 2021
Data ownership gives each of us the keys to our health puzzle and insight into how our data is used outside medical appointments to further research, innovation, and better health care for all. It gives us the keys we need to care for ourselves and our loved ones, and to build health in our communities and our country at large. Data ownership unlocks the path to achieving our health and wellness potential.
Including an individual’s genetic information is critical to personalized care. – In addition to Estonia, the NHS in the UK, Iceland, and the UAE have plans to sequence the DNA of large segments of the population to make citizens’ lives better. Here in the U.S., Boston Children’s Hospital had a five-year program where parents of newborns had the option of having the child’s DNA sequenced to test whether that information helps guide the care of babies and monitor how pediatricians and parents react to knowing it. Phase 1 of that study wrapped up in 2019. These plans likely won’t be perfect at first. But other nations looking to implement their systems might build off those, and citizens will be the ones to benefit.
Digital health tools development is a complex, multifaceted, and highly dynamic environment. While significant implementation challenges remain, I’m confident that there is a better chance of preparing for whatever is coming next by demonstrating the best practices of how other governments, regulators, and developers tackle the challenges of today.