The Future of Healthcare is Data. Can We Trust It?
Posted on November 11, 2018Imagine this: James is traveling in a rural area by himself, far away from home, admiring the beautiful landscape that surrounds him. An unexpected event happens and he is rushed unconscious to the hospital. The only thing the doctors know about James is his name—they saw it in his wallet—but that’s it. They don’t know if he has any preexisting conditions if he is taking any medication, or who should they call to ask about those things. They just have to do their best with the little information they have available at that moment.
The user experience in healthcare is conditioned by multiple factors: infrastructure, resources, waiting time, the kindness of the staff, follow-ups, among others, but data is not usually perceived as part of the experience. Patients could have multiple files scattered across multiple hospitals, something that becomes especially cumbersome if those hospitals don’t use electronic charts, but even if they do use them, they are likely to exist in formats incompatible with the systems used in other hospitals, because there is no agreed-upon standard for health data portability and interoperability.
The health advantages of a unified and networked health database could be enormous, not just because they could enable doctors to better treat James (what if he’s allergic to penicillin?), or save you the trouble of re-taking exams, but also because life-saving patterns could emerge from the aggregation of that data. Doctors treating people with rare diseases could benefit from finding commonalities with other similar patients, perhaps allowing them to find the root cause of the illness. Public health services could use predictive models with historical data to observe and prevent chronic diseases in the population or to better assign resources (money, medicine, and specialized doctors) to the correct geographical areas where some diseases are more common. It could also pave the way for massive optimizations to medical research that has the potential to prolong lives in unforeseen ways.
Some of these things sound amazing, and some so obvious that it’s surprising that they’re not happening already. And though perhaps we are headed towards this future, there are massive hurdles that need to be overcome. First of all, there needs to be a standard format for medical data exchange, and after agreeing upon it, the need would arise for a huge standardization effort of existing data (or in some cases, for digitizing it in the first place). Next, it’s of extreme importance to preserve patient privacy. Techniques for statistical aggregation that strip away the personally identifiable information of a person who voluntarily donates data to a shared statistical database, such as differential privacy, should be used.
A patient should own and be in control of their own medical data. In an age where most of us have portable online identities, it seems oddly antiquated to have to retake exams because the new consult you’re attending has a blank sheet for your medical history. Blockchain could be a solution here. The state of Estonia has transformed itself to be a digital state built around Blockchain, because it enables people to securely establish sole ownership over their data and who gets to access it—it is not centrally-managed, so no other entity can stake a claim over it. This robust technological framework should be accompanied by a similarly solid legislative one that empowers people over corporations or the government.
It’s reasonable and positive to be wary of sharing one’s most intimate data. This kind of skepticism is what leads to the development of better solutions that don’t require giving up one’s privacy and still gain the benefits of “big data”, but generating trust around these mechanisms is a challenge. Putting people always in control is definitely the right spirit, and hopefully in the upcoming years, we, as a society, can establish a way for all of us to help each other get better without compromising on our fundamental rights. The doctors treating James got lucky—they treated him like anyone else, and James got better, but unless we modernize our handling of health data, somebody else might not be as fortunate.
AY
References
_Blockchain Revolution, Don Tapscott and Alex Tapscott [2016]
_e-estonia