Nobody is keeping track of your health. It’s up to you.

Nobody is keeping track of your health. It’s up to you.

I was wrong to think that having good health insurance meant I’d have good (complete) health records.

Written by Shelly Lai

Photo by Owen Beard on Unsplash

I went on a mission to collect my health records, and was surprised with what I found:

  1. Only the last seven years of my health records are intact and retrievable. All the previous records have been deleted.
  2. Even though I’ve had centralized, national health insurance for my entire life, my records are not all in one place. They are scattered among the doctors, clinics and hospitals where I’ve ever received care.
  3. I have begun keeping my own health records because I don’t trust the direction medical care is headed with AI or machine learning tools “predicting” diagnosis based on such limited health data.

I have really great health insurance because I live in Taiwan. Our National Health Insurance makes it easy and inexpensive to receive great care, because it’s built upon a simple system of centralized health records. When I was recently challenged to track down my medical records, I assumed it would be easy. I was wrong.

Image used in theBloomberg article linked below

I work as a researcher at Bitmark, helping find digital solutions for the issues plaguing the health industry: institutional data collection, medical record management, public health research at scale, and much more. Lately we’ve been heads down building an app to help people collect and own their medical records in order to pair their records with the daily health data already tracked by their smartphone, giving them an easy-to-access more holistic view of their health. [Shameless plug, if you want to know more about that app (it’s in beta, we need users!), jump to the bottom to read a bit more.]

I assumed the work we’re doing is to help people in countries without national healthcare manage their health records. Little did I know I’d need this just as much…

Most of the Bitmark team lives here in Taipei, Taiwan — it’s our main office. But Sean, our CEO, is American. He’s explained the plight of a fractionalized healthcare system, how in the US it’s difficult enough to just to sort through healthcare registration, let alone manage health records from so many insurance carriers and doctors’ offices. All along, I’ve assumed the work we’re doing at Bitmark is to help Americans and people in countries without national healthcare manage their records. Little did I know I’d need this just as much in Taiwan.

Sean said “If it’s that easy to collect your health records, show me.” I embarked on this task that appeared easy enough, even though I (and I’m pretty sure the majority of our Taiwan team) still didn’t believe it was necessary.

The Taiwanese National Health Insurance System (NHI)

Taiwan launched its national health insurance (NHI) in 1995 with comprehensive coverage including inpatient and outpatient care, dental care, over-the-counter drugs and traditional Chinese medicine. Taiwan’s NHI is touted as a model for other countries (hint hint, the US) since Taiwan had many of the same issues that plague the US like high insurance premiums, non-comprehensive (or no) coverage for people without private insurance.

NHI Smart Card (found at nhi.gov.tw)

The NHI has been a big success, now covering 99.6% of Taiwan’s residents, with service contracts with 93% of the country’s hospitals and clinics, according to the NHI’s 2017–18 annual report. Bloomberg ranks Taiwan’s NHI system #9 in the world for health care efficiency. (The US is #54).

Everyone in Taiwan has a NHI Card, which contains all their basic info and medical history. When someone visits a doctor or hospital or clinic, the doctor inserts her NHI card into the card reader, and can scan through key information like prescriptions, allergies, and past care or visit information.

With this card system, I thought it’d be easy to collect my records. According to the Taiwanese Medical Care Law, patients have the legal right to request copies of their medical records as well as medical imaging.

And it did start out easy enough. All the big hospitals have clear instructions on their website explaining the application process and fees. People can apply for their health records via phone, email, or in person, and the application form is easy to complete. Once submitted, it takes less than 3 working days before the applicant can collect the records.

Yes, hospitals and a centralized system made it relatively easy to retrieve what I wanted. However, there were some issues.

This centralized system isn’t so …. Hm, centralized?

You still have to go to multiple offices if you’ve received treatment from various spots.

If I saw a specialist across town once for a surgery, those records would be at that particular hospital. It turns out the Taiwanese NHI system doesn’t store my medical records — each hospital and clinic does.

In line to collect my health records.

Although our costs in Taiwan for healthcare may be drastically lower than in the States, our ability to personally collect our records may not be so dissimilar. In Taiwan, our healthcare system may not be as centralized as I thought.

To collect a comprehensive set of records, you need to remember every single hospital or doctor’s office you’ve ever had treatment. That poses a serious challenge. I knew this was a problem for Americans and people without a national healthcare system, but I didn’t expect it to be an issue for me.

They are mine, but they are very clearly not mine.

It was a disturbing feeling to have to ask and pay for something that should be my property. For all intents and purposes, these records are about my physical being, my body and health; they should be mine.

Nothing screams “this does not belong to you!” quite like having to pay for it.

Yet, ten pages of medical records cost approximately NT$ 150 (~$5 USD). It’s not an extraordinary amount of money, but it added up after going to every place. And nothing screams “this does not belong to you!” quite like having to pay for it. These are my records. Yet I have to pay every time I want to get a copy of them. Even if I retrieved a copy and then accidentally dropped them down a storm drain, if I went back to get a second copy the same day, I would have to pay again.

Did I mention that you get a literal stack of papers stapled together? And any images you request come on a CD — which only works on Windows. (Who has a CD rom anymore?) The hospitals/clinics I visited didn’t have the capability to offer me a digital file. If I cannot feasibly even see or read my records, this is a clear sign that my records don’t belong to me, they are not my property.

It’s incomplete! There’s a limit to the amount of data they keep.

This was the biggest shocker for me: The NHI is only required to keep seven years of your medical records.

The hospitals and clinics that I went to more than seven years ago do not store my medical records or imaging anymore. Eeeep! I assumed everything about me is safely stored in a centralized database, and that I can get it anytime I want. Nope. After the obligatory seven years, records are destroyed and there’s no way to get them.

Finding out that my health records from the first 20 years of my life are irretrievable, really scared me.

How can a health care system with only seven years of data on me truly make the best medical decisions for my optimal health? A doctor might not know of a major surgery, past medications, allergies that only showed up once. Those are the things that I would probably remember. But what about all of the detailed terminology that I wouldn’t remember about those medical appointments? Plus, diseases and health conditions develop over a lifetime, not just over seven years. The conditions that lead up to more serious illnesses need to be tracked over time. Without that lifetime of information, I feel I’m not getting the fullest medical treatment I can. It’s kind of scary when you think about it.

And what about the future of healthtech? As we start to use AI and machine learning for predictive medicine and patient engagement, will these robots only be using the last seven years of our data? Even if it’s only to make minor medical decisions to predict health outcomes, I don’t feel very comfortable with that. How can new tech be effective with such limited data history? I don’t want AI determining my health outcomes based on only the last seven years of my health information.

If nobody is keeping track of my records or health, it’s up to me.

So in the end, I’ve learned that even in the best of circumstances, like living in a country with a well-regarded national health system, I need to take control of my own medical records to have comprehensive info on my health. In order to only establish ownership over what should actually be mine, and to guarantee that I will be able to source my records when I most need them.

via Giphy

Bitmark Health

If you jumped down here to see about the Bitmark Health app (or made it through my story, thank you!) here are the details:

Bitmark is working on an app that will allow people to record and register their health data (the stuff already tracked by a smartphone) as well as their medical records (imaging, scans, photo uploads… if you can retrieve them all) and empower people to keep everything in one, secure, easy to manage place — to gain a more holistic view of their health.

Screen shot from Bitmark Health

We’d love your help as we work out the best version of the Bitmark Health App: download it on iTunes, and join the FB group to give feedback.

By Bitmark Inc. on October 30, 2018.

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