Personalized Medicine and the Blockchain, Part 2

Check out Part 1

There are 3 main reasons personalized medicine hasn’t yet taken off:

  1. Lack of patient incentive
  2. Privacy concerns
  3. Useful data is silo’ed and not shared

Lack of patient incentive

Getting your entire genome mapped is affordable by the middle class. VeritasGenetics will now sequence your genome for $1,000. This was unimaginable even five years ago. Even a single productive preventive health decision or personalized dose of a drug will save payers this amount many times over, not to mention the improved health outcome the patient will experience.

However, the medical community has done an abysmal job of communicating the merits of personalized medicine and getting genomes mapped to the general public. Companies like ancestry.com and 23&me are focusing their marketing efforts on the provision of ancestry information for many reasons, most of which are beyond the scope of this article, but they know their target audience won’t understand the benefits to their health quite yet.

There needs to be an exogenous force that compels patients and gets them to want to do further “omics” (genomic, proteomics, metabolomics, microbiomics) testing, ideally in the form of a financial incentive.

Privacy concerns

Remember the Anthem data breach? Oh sorry, I should be more specific. The one before the last one. How about the most recent Equifax hack? Wait, don’t forget about the Humana one.

Admittedly, these are terrifying. Any semi-competent software developer’s first question will be “was the data encrypted”? Turns out, no it wasn’t.

This oversight in not securing such a large volume of sensitive data is appalling. Encryption methodologies have been around for decades and surely Anthem is most likely already using well-known and trusted encryption algorithms like SHA256 to store user passwords in authenticated parts of their website. There are also many safe, 2 way encryption/decryption systems like OpenPGP that are very popular.

Simple, trusted tools already exist and are embedded everywhere in our lives. You use them without even knowing it (Facebook, Twitter, Online Banking). The public deserves the same secure and cryptographically hashed encryption methodologies when their health data is stored.

Useful data is silo’ed and not shared

Have you ever had to deal with the frustration of trying to get your medical records transferred from one family doctor to another?

Have you ever had an X-ray and wonder where those radiographs end up after the doctor puts the image up against a light and gives you the good news that your ankle that looks like it’s suffering from elephantitis is just a sprain?

With all this buzz about Electronic Medical Records why does it still sometimes take hours (or days!) for your doctor in the emergency room to access your latest lab results?

It’s because each of the different actors in our healthcare system have their own standards for storing and sharing our data. Insurance companies, drug companies, doctors, public health systems, laboratories all house their own data with no uniform standards for security and unilaterally decide how to transmit that data when they receive a request.

Our technological capabilities are more than adequate to securely aggregate this data and allow for rapid read access. Especially in the US, these disparate actors are now in an arms race to see who can amass the most patient data as they view this as a competitive advantage. We can preserve the healthy competition among healthcare vendors while also making sure patients receive the highest quality care possible by removing these arbitrary barriers.

So, how do we fix these issues? Hint… through the Blockchain :-)

Read Part 3

References

VeritasGenetics, 2015. VeritasGenetics Breaks $1,000 Whole Genome Barrier. https://www.veritasgenetics.com/content/veritas-genetics-breaks-1000-whole-genome-barrier-2