Will the Declaration of Health Data Rights Help Drive Health Care into the Digital Age?
Bloggers from the medical, technology, and patient advocacy spheres are banding together to spearhead an initiative designed to let people—and medical care providers—know that patients have an “inalienable” right not only to access their medical records in electronic format, but maintain control over the data themselves. The initiative, called the Declaration of Health Care Data Rights, is set to arrive in time for Independence Day on July 4th.
The beauty of the initiative is that it really isn’t pushing for anything American citizens don’t currently enjoy. Federal law already entitles you to easy, inexpensive access to your medical records in whatever form they exist. The problem? Most patients, doctors, and hospitals aren’t aware of the law. The organizers of the Declaration of Health Care Data Rights hope that their initiative inspires physicians and hospitals to make health care records more available—by posting a copy of the Declaration in their office, perhaps.
Nevertheless, the initiative comes at a crucial time for the future of health care in the United States. The digital age has democratized all sorts of data, including health care data, and that data can now be used by individuals to play a more active role in the sorts of things that affect their daily life—including, and especially health care. All this is predicated, of course, on the availability and custody of data, and data in a format that’s easily digested by multiple parties and multiple platforms, especially in the realm of health care.
The availability and custody of health care data should be a no brainer: it belongs squarely in the hands of the individual. The format of the data is the sticky wicket. As we’ve discussed in the past, much of the individual health care data that’s available in digitized form was derived from billing records and health insurance companies, which means the data probably needs a thorough scrubbing for accuracy. Once given access to his or her health care data in a digitized form, it’s up to the individual to maintain its accuracy. And this, really, is as it should be; after all, with great rank comes great responsibility.
But even accurate health care records won’t do you much good if your physicians can’t use them to interact with hospitals and other health care providers. That’s why we fully support the concept of using the Obama administration’s earmark of $19 billion to the health care industry to standardize the platform on which digitized health care information will be utilized. The concept, first posited by Drs. Kenneth D. Mandl and Issac S. Kohane in the New England Journal of Medicine, posits that a standardized platform will enable an ecosystem of applications to grow around it, much the same way that Apple’s iPhone platform drove the growth of the iTunes App store and the apps concept in general. Apps fairly revolutionized the smart phone industry; Mandl and Kohane believe—and we agree—that apps, albeit in a different concept, could revolutionize the health care industry as well.
Thus, a Declaration of Health Care Data Rights is a step in the right direction. To show your support for the initiative, visit www.healthdatarights.org.
By Robert Pothier