Categories
blog

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

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.
Categories
blog

The Emergence of Blockchain in Taiwan

The Emergence of Blockchain in Taiwan

Amazon Alexa, self-driving vehicles, and robotics. These are all widely known technologies available to the general public which utilize hardware, but rely heavily on software that is programmed into it in order to function. As many are able to perceive, technology is shifting towards a software-based environment. Namely in Taiwan, one of the world leaders in hardware manufacturing, technology leaders see opportunities beyond hardware. A specific area of interest in Taiwan is blockchain technology, which is a public ledger utilizing a peer to peer, decentralized structure. As of now, we put a lot of trust into a third party such as banks, retailers, and corporations to keep our private information safe (which isn’t always reliable). Blockchain is a clever technology whose versatility is becoming increasingly apparent to the Taiwanese government. With blockchain, transactions are recorded in a public ledger and verified by none other than the users themselves, allowing the transfer of cryptocurrency and other data in a decentralized structure. Due to its almost guaranteed security and its easy traceability of irregularities, it’s not hard to think of the many possibilities for practical application that blockchain can provide — recording information such as healthcare data, tracking natural resources, and removing the need for an intermediary to name a few. Various Taiwanese businesses, institutions, and the government have begun to utilize blockchain technology in order to benefit citizens.

Taiwan has traditionally been a very hardware-focused country in its technology sector due to cheap labor costs and a high marginal profit. Sharp, HTC, and Acer are some of its most prominent names. Recently, however, Taiwan has been working towards integrating software as well, such as IOT, software development, and blockchain. Led by Jason Hsu, a legislator who is known to be a strong advocate of blockchain technology, the Taiwan Parliamentary Coalition for Blockchain was founded to push blockchain projects through legislation. Before, the Taiwanese government adopted a “hands-off” approach to blockchain technology — it neither supported nor prohibited it. In recent years however, authorities are becoming increasingly aware of its capabilities and have announced its support to turn Taiwan into a global blockchain nation. Due to various projects which have proved the usefulness of blockchain, its advantages and improvements in the public sector are clearly recognized by the government.

Some of these projects include a blockchain-based payment system which greatly reduces transaction costs and a virtual ID card that prevents identity theft. As a Taiwanese citizen, the impacts of having blockchain integrated in the public sector are very visible. For example, a blockchain-based payment system running on Ethereum has already been implemented near National Chengchi University, used by restaurants and merchants. Since its implementation, the number of transactions in this area has increased fourfold, showing how well its improved merchant sales. There are plenty of reasons for this — decreased transaction costs, elimination of intermediaries, and increased profit that follow. Because of the Byzantine Fault Tolerant consensus protocol that allows two nodes to communicate safely through a network, if a consumer were to pay for something through this system, the transaction times would be cut to less than a second. It would also greatly improve the efficiency and security for the average Taiwanese merchant because of the blockchain structure: transactions are easily verifiable and located on the public ledger, with little doubt of fraud. Due to its low cost for each transaction, merchants forgo extra payments to banks and corporations, allowing more profit to be made.

Another project aimed to integrate blockchain in the public sector and therefore improving the security of Taiwanese citizens’ data is “TangleID”. Think of it as a “Digital Citizen Card” that stores important health data, personal information, and other identification. Identity theft is always a risk when dealing with traditional public ledgers of data. Data leaks, criminal activity, and other threats can all compromise one’s personal data and identity. Yahoo is infamous for a data leak which compromised three billion user accounts. eBay has had a similar crisis in 2014, in which 145 million users’ names, addresses, birthdays, and passwords were all exposed. By utilizing the security of a blockchain ledger and its decentralized nodes, the risk of data being leaked intentionally or unintentionally from a third party is eliminated without an intermediary needed. This is the main basis of TangleID’s security. This way, citizens will be able to rest assured that identity theft as well as voter fraud will be eliminated.

One application that would be especially useful in Taiwan would be using blockchain to track natural resources. Although Taiwan has been going through a very rapid industrialization for the past decades, the environmental costs of doing so is enormous and often times shrugged off in the name of advancement. A blockchain could be used in this situation to track where resources are going towards and how much is being used. By using a blockchain and a “transactive grid” to track energy usage, businesses and the government would be able to easily query where energy is being sourced from and how much is being used. The fact that adding anything onto a blockchain is a immutable record and its low transaction costs make this a very efficient implementation.

Through the multitude of projects that are already in the works, it is very visible that blockchain can have an enormous impact in the public sector, improving Taiwanese citizens’ lives in many aspects. The unique security that comes with utilizing a blockchain structure, its fast transaction times, and low costs can be integrated in a number of creative ways. Jason Hsu hopes to continue this momentum of innovation and change with blockchain. As one of the writers of the “Financial Technology Innovation Experimentation Act” passed in Taiwan, Hsu constantly rallies for legislation supporting blockchain and cryptocurrency. With the pro-blockchain environment in Taiwan, new projects that may be in the works will utilize this technology and be a driver for next generation’s innovation, benefitting citizens and the government alike.

By Kenneth Lee on October 12, 2018.