You’re reading this article, whatever the device you’re using, thanks to billions of networked computers that can all communicate with each other using the same language.
Global standards have transformed the world, from the internet to finance to aviation. Healthcare, however, is lagging far behind, and we are all suffering as a result. The scarcity of global healthcare standards creates waste, inefficiencies and medical errors, while significantly delaying the time to impactful interventions.
Most of the world’s health data exists only on paper, mostly as free-form notes. When I was at a conference in Heidelberg two years ago, I was shocked to learn that some leading German academic medical centers still stored health records on paper. This problem is not restricted to emerging markets.
When health data is digitized, it is usually when money is involved, such as payments to hospitals from insurers, governments or patients. If you’re lucky, you can now make an appointment online.
But how many times did you have to physically bring the results of a test ordered by a different doctor? What kind of reaction do you get when you bring something from outside the official healthcare system, such as your Fitbit data or nutrition log?
Wouldn’t it be great if you showed up to your doctor’s office and she had a dashboard summarizing the past 10 years of your medications, tests, procedures, general fitness and dietary behaviors, and could focus the conversation on you and how you’re feeling, with all the context behind the scenes?
Or better yet, what if you didn’t have to show up to the doctor’s office at all because you’ve been on top of your health thanks to the smart reminders, regular testing, and behavioral nudges, designed and timed perfectly to your needs?
Taiwan and South Korea show the way
It’s not all doom and gloom. In Asia, both Taiwan and South Korea have full national electronic medical records that are structured and queryable for research, health, economic and epidemiological purposes.
To my best knowledge, these do not incorporate continuous measurements from medical and consumer electronic devices, and other lifestyle habits and physical activity. This would help healthcare practitioners better classify risk, predict trends and recommend courses of action.
These records also have yet to fully align with emerging digital health models, although here too, change is happening. (Taiwan’s My Health Bank, for example, is a personalized online medical record that people can supplement with their own information, including height, weight, blood pressure and other data). These changes would be key to enabling the future I briefly described above.
Nonetheless, South Korea and Taiwan are consistently ranked in the global top five efficient health systems, while offering true universal coverage. Some health systems have been getting this right.
Emerging standards for specifc areas
International healthcare standards are also taking shape, usually focused on specific areas. These include:
- Data exchange between hospitals (e.g. FHIR)
- Massive taxonomies of clinical terms and procedures (e.g. ICD10, SNOMED-CT, or even better, UMLS)
- Standardized archetypes for clinical data storage (e.g. openEHR)
- Pooling EHR data into personal health records (e.g. Apple Health Records or CommonHealth)
- Integrating your mobile activity, wearable, wellness, and light clinical data in one place (e.g. Apple HealthKit or Open mHealth).
There are also national efforts and derivatives of these international (albeit often US-centric) standards.
However, it feels like you need several PhDs to fully appreciate and be proficient in all these emerging standards. Here is some fun intro reading on OpenEHR vs. FHIR, for starters.
I’m sure many start-up founders feel the same way, especially those breaking into healthcare. Maybe this is why many decide to store their data however they feel, or insist on owning the patient journey despite being a relatively small piece of the overall clinical picture.
Start-ups, look to the future
I implore those who are involved in creating, curating or analyzing healthcare data (especially start-ups) to think carefully about future-proofing and interoperability. We should all actively participate in dialog with industry, consortia and policymakers to ensure we’re continuing to step in the right direction.
I believe governments are ultimately responsible for driving these initiatives, but this shouldn’t happen in a vacuum. There could also be exceptions (such as the recently formed Truveta – 14 health systems in the United States that are pooling their data together) in places where there is a propensity for private sector-driven solutions or where the public health system is weak.
It is encouraging that standards are emerging and being adopted by health systems around the world. However, we’re a fair distance away from a truly integrated and continuous electronic health record that incorporates all relevant data and detail (clinical and contextual) — let alone one that is properly structured, secured and localized.
I wonder whether the pandemic, and the likely requirements of proof of immunity or negative infection will push things over the tipping point.