“What do we want? Our data. When do we want it? Now.”
I wrote that back in February, in reference to the companies that make the tools we use for e-mail, photos, video, music and the like. But when it comes to medical records, access to data isn’t just about taking your tunes to a new music service — it’s about your very health.
We’d expect a company that offers software to help doctors share medical records with their patients to publish a study in favor of doing so. Indeed, Practice Fusion’s report finds that “Concern about access [to medical records] outweighed worries about inaccuracy, theft, accidental destruction, ER availability or referral of personal medical records.”
In other words, more people worry about accessing their own medical data than about that sort of access resulting in their medical records getting leaked.
Doctors have less time to spend with each patient these days, while patients see an increasing number of doctors and specialists. Too often, patients and their families are the only ones following the thread of a particular illness, so it stands to reason that they should be able to access their own charts, x-rays, catscans, blood tests, and so on.
Regardless of whatever motivation Practice Fusion had for releasing this study, its findings pass the smell test. Our general lack of access to our own data is a huge and growing problem, medical data in particular describes things that were going on in our own bodies at some point in the past. We paid our doctors to record it. If we don’t own that data, it could be argued that no data can be owned, which is clearly not the case.
Plenty of doctors and hospitals already store records electronically, but they can only be retrieved by medical staff on a secure network — not by patients on their home computers, as Practice Fusion does, for free. (The company makes money by selling anonymous, aggregated data to pharmaceutical and other firms, and does not charge doctors or patients.)
As things stand now, the Health Insurance Portability and Accountability Act of 1996 requires healthcare providers to give patients access to their records within 30 days. But the company says that process currently takes up to 60 days, which can be an eternity when you’re battling an illness — and even then, state laws restrict what can be shared, patients can be charged for accessing their own information, and sometimes all they get is “just a summary” rather than the records themselves.
Here’s a summary of the study’s findings, indicating that quick access to one’s own medical records is a major issue across all demographics measured by the 1,002-person study.
People change doctors when they move or change health care plans, so in order for a system like this to do the most good, standards would have to be in place and doctors would have to be required to participate, so that patients would be able to access their entire set of records in one place. That would bring privacy concerns and require new regulations.
But if this study is any indication, people’s need to access this information outweighs the risk of that information being used to invade their privacy.
Follow us for disruptive tech news: Eliot Van Buskirk and Epicenter on Twitter.
