As a self-described patient advocate and Stanford University Medx Scholar, I’m very much biased towards patients. I strongly believe that our health care system is currently failing patients (myself included) and needs to rapidly shift to a fully participatory, patient centered system. We need a system that empowers patients so they can become active participants in their own care. With technology improving and changing at an ever-increasing rate, we need to switch from HealthCare 1.0 of yesterday and get ready for a new revolution in health care.
An important aspect of this new technological revolution will be patient data. Specifically who owns patient data? Can patient data even be owned? These are incredibly important questions that require open-minded debate and discussion of the type that Intake.Me was encouraging last Friday during a tweet chat (#patientchat). It is important to note here that social media is now the arena where these topics are being discussed.
As I was stating during the chat, I’m of the belief that patients can and do own their own data because we are the ones creating it. After all it is my blood, urine, and genetics that is producing said data. Fred Trotter however, a self-described data journalist into hacking healthcare, believes I’m making a “poor assumption” in assuming that patient data can be owned at all. Despite not participating in the tweet chat that I was, he sent me a link to a post (http://strata.oreilly.com/2012/06/patient-data-ownership-access.html) he wrote a couple of years ago backing up his “poor assumption” claim. I’m here to submit that his assumptions and claims are flat wrong.
Who Owns Patient Data?
Mr. Trotter’s article begins by comparing health care to automobile ownership. Although no one has the absolute right, according to him, to destroy health information we do have the right to drive our car into a tree or the ocean if we so desire. Therefore, the idea of ownership is “inadequate for health information” according to Fred Trotter.
Now, I’m new to the patient advocacy world and I’m a relatively nobody, especially compared to Mr. Trotter, but his analogy seems simplistic and not well thought out. Patient data is much more comparable to financial data versus car ownership. We take our cash (ie blood, urine, genetics) to a bank (doctor’s office) in order to either save it (physicals, Wellness Programs) or to gain interest on our deposit (return to a state of healthy or increased quality of life). Financial advisors (ie Doctors, Nurses, Physician Assistants) prescribe a possible path in order to obtain whatever goal we have set out. Bank tellers and employees (ie Health IT) produce statements, track progress, present reports, and manipulate data generally at the request of the doctor or patient.
As we all know, banks and financial institutions have a unique set of rights and privileges that govern what they can and cannot due with our money. Depending on the political and regulatory climate at the time, an investor, bank customer, or depositor remains at the center of all financial transactions. They get the final say in where their money is going to be invested, type of saving or checking account they want their cash put in, and who can have access to the cash.
This is still comparable to a doctor ordering a test or procedure in order to collect patient data. The patient still gets the final say on if that procedure or test is going to happen, the doctor cannot add secret tests on without a patient’s knowledge, and an engaged patient can dictate who can have access to their information. Patients, not doctors or IT employee’s, remain at the center of all transactions because it is their blood, urine, etc that the data is coming from.
At this point I would like to distinguish myself as a patient advocate with Fred Trotter, a data journalist hacking into health care. I’m a doer, I like ideas and suggestions that might help solve the problem at hand. I fully believe that if Doctors or Labs had to pay patients for their data (blood, urine, genetics) that the issue of patient data ownership would be solved immediately. Let me explain.
For example, let’s say a doctor and patient conclude that a genetic test is needed in order to come up with an accurate diagnosis. With the help of their doctor, a patient would then contact several companies who specialize in genetic tests. These companies would then bid on the right to perform the genetic test. Results would be then given back to the patient and doctor for diagnosis. The price paid to the patient would depend on whether the patient wanted their data aggregated with others in order to be sold to researchers at some further point.
In this example, patients retain ownership of their data until a price is paid for it. Once the transaction is done, the ownership question becomes an issue of whether or not the patient wanted their data aggregated or not. Market principles are being applied just like it would be in the financial world. Hopefully in the near future this business idea will become a reality.
The question “Who owns the data?” is a valid notion if we are ever to create a truly participatory, patient centered healthcare system. After all, data means nothing without story. What Mr. Trotter and others like him have forgotten is that story comes from and belongs to individual patients. Without the starting point of a patient, the whole healthcare system would cease to exist.