You should control your own health care data

This post originally appeared on U.S. News and World Report’s Policy Dose blog.

If you have ever stayed at a hospital, visited a physician’s office or filled a prescription at a U.S. pharmacy, your medical information—stripped of identifying data—is most likely collected, shared and analyzed for various medical and marketing purposes. Your data may have helped a pharmaceutical company sell more drugs, a researcher find a better treatment option for a disease or a government agency predict the next flu outbreak. This is done through a multibillion-dollar industry that feeds on your medical data and reaps millions of dollars from analyzing it, without asking your permission or sharing the resulting profits with you.

To protect patient privacy in this health care system, we make every effort to limit the exchange of identifiable medical information to only the parties that are directly involved in a patient’s medical care. Although patients can still request their records be sent to others, they are never involved in the medical data-mining industry. Despite some concerns, lawmakers argue that as long as personal identifiers are removed from medical records, patient identity is protected, thus allowing companies to collect, exchange and mine heaps of de-identified medical data without patient consent by many different entities on a regular basis.

But here is the problem: In the current system, patients have no control over what is seen by whom, nor do they reap all the economic and medical benefits their medical records may hold. This not only hurts patients, but also goes against the best interests of government and the health care industry. If patients were given the option to make informed decisions about their privacy and selectively disclose their identifiable medical information to the parties of their choice, the medical and economic value of their data would increase significantly. More importantly, patients themselves could receive a fair share of their benefits, both medical and financial.

To understand the medical benefit of this data to patients, consider Alzheimer’s disease, which is the nation’s most expensive disease, affecting over 5 million Americans each year, and yet still has no cure. Despite notable efforts, such as the Alzheimer’s Associations’ Trialmatch program, it is very difficult to find qualified patients to enroll in clinical trials. But a system in which interested individuals could share their detailed medical records with Alzheimer’s researchers and pharmaceutical companies, so that they may analyze it and alert them about their qualification for one of these extremely expensive clinical trials, would not only help reduce the time and cost it takes to complete the trial—benefiting society (and of course pharmaceutical companies)—but could also potentially save patients’ lives by diagnosing disease early or even finding a treatment.

The personal financial benefit of patients’ health data is also worth noting. We should allow patients to decide with whom they wish to share their medical record—and get compensated accordingly. If there is a market for medical data, then patients should be able to sell their data to whomever is willing to pay for it.

But the benefits of disclosing health information are not necessarily medical or economic: Once individuals are given the choice, pure altruistic motives will be strong enough for a majority of them to freely disclose their information.

Rather than bypassing them, we should allow patients to personally control their privacy. In other words, rather than protect health privacy itself, the government should instead protect the people’s right to control their health privacy. Before using their data, we should seek patients’ permission and share the medical, economic and altruistic benefits of their medical data.

We now have the technological capability to put patients at the center of medical information exchange systems. Known generally as consumer-mediated exchanges, these systems allow patients to save, manage, and share their own records. They are fairly suitable to address this need and further allow patients to selectively share their records with certain entities based on different medical and financial reasons.