Owning Your Health Information: An Inalienable Right

We are on the cusp of fundamental changes in healthcare that go beyond President Obama's healthcare reform efforts. As the Internet has revolutionized the dissemination of information, the Information Age still hovers outside of hospital corridors. But it is poised to make a big entrance, as a slew of networked implanted devices, wearable monitors, and a digestible chip enters the marketplace in the coming year. Doctors, pharmaceutical companies, and device makers need an enlightened view that addresses the realities and potential of the Information Age and fully recognizes that the patient is the consumer of medical care.

As an invasive cardiologist, I have been implanting pacemakers and defibrillators for almost 20 years and have seen medical devices get smaller, more efficient, and, in some ways, more complicated. Modern devices have enormous networking capabilities, and they can continuously stream physiologic information.

We are on the verge of the day when health information and its immediate dissemination can help save lives and make the health care system more efficient. If you live in California, and your elderly mother lives in Florida, you will be able get her health status emailed to you every day.

But there are major obstacles standing in the way of people's rights to access their health care data. There are over 400,000 patients with implanted defibrillators that have networked capability. Up to 20 percent of people with defibrillators will be shocked from the device. While the shock is life-saving and one of the main reasons the device gets placed, patients feel something that is akin to a punch in the chest and it causes great concern and curiosity from the patient. Where does the vital information about the shock go?

It is transmitted to a secure server--managed by device manufacturers--and the information is then downloaded to a secure web site for the patient's physician. I think patients have a right to see the information, and be able to share it with family members and other physicians, but patients are given no opportunity to access it. Device manufactures tell me that they won't allow patients to access the data because they are worried about insulting the physician who implanted the device. Physicians aren't exactly excited to give up the data because they believe it will cause more work and put them at risk for lawsuits.

Patient access to health information is a good thing. For example, diabetics can get their blood sugar value from a finger stick and program an insulin pump to deliver insulin. As physicians and as a society we get the best results with an educated, engaged and empowered patient. Similarly it seems obvious to me, having implanted medical devices for two decades, that patients deserve and merit access to the data presented to them in a way they can understand. Why should I or any other physician be the only conduit through which a patient can find out what is going on? Physicians are the hardest people to get a hold of in the health care information stream so we need to give up absolute control of the information flow by opening up the medical information gates. We face a shortage of physicians and the only way the medical system will continue to thrive and innovate comes from empowering patients. A more enlightened use of the technology can help solve many of our system's flaws.

Three years ago we launched a conference, entitled the University of Southern California Body Computing Conference, and there were hardly any networked medical products to talk about except for defibrillators and wearable devices like the Nike +, which has a GPS chip combined with a social networking site. But technology creation and adoption is incredibly rapid in the modern world, and today Silicon Valley startups as well as more established companies are creating life-altering technology, from smart phones to digestible smart pills, which will be coming to market this year. In the near future, we could all be monitored by body computing devices.

Of course, I have a deep concern about the potential for abuse by these new products. I wonder about the long-term impact of health information going through the Internet pipeline, where it could be misinterpreted or fall into the wrong hands. But for the most part, I think body computing will bring about a safer patient experience because physicians will have better and faster access to records, patients will own their records (If you can see your credit report, you should be able to see your own health records), and information on a secured server is often more private than paper records.

I imagine a virtual health care village that helps care for the patient and democratizes the information stream. And importantly, with all of the megabytes of health data generated by body computing devices, it is not hard to imagine that new insights will emerge that can be used to discover faster cures for common diseases like heart disease and cancer. It is with this hope that I welcome the Information Age into medicine.

Leslie A. Saxon, MD, is the Chief of Cardiology at the University of Southern California's Keck School of Medicine and the host of USC's annual Body Computing Conference, which will be held on October 9.

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