If the openness of the government’s data is indeed here to stay, who is going to be using this data, and to what end? As a recipient of health care in the United States, what benefits can I expect to see from having my data out there in the virtual world, and how exactly does the plan to “get the data, use the data, and improve health” work?
Open data can impact the health care industry in a variety of positive ways. Let’s start with the one closest to home: patients having access to their own data. I’m very lucky that my own health data is quite limited and uninteresting, consisting primarily of evidence of an annual physical and a flu shot. However, for patients suffering from severe or chronic conditions, the more information available to them, the better equipped they are to manage their illness and stay engaged with their own care. Patients are entitled to access their data, no matter where or from whom they received treatment.
If one patient can benefit greatly from having access to their data and monitoring their own health trends, just imagine what researchers are able to do with full (deidentified) data sets. Researchers with access to hundreds of thousands of data points about disease, treatments, and outcomes will be able to make huge strides in improving and creating cures to common diseases from which millions currently suffer. Results of this research can, in turn, help clinicians deliver the most up-to-date, effective care to their patients.
Those of us working in the health IT sector also benefit from open data. Far from being merely an electronic holding tank for health data, medical software companies, from large EHRs to wearable devices to mobile charge capture solutions, are constantly evolving to best meet the needs of patients, providers, and the medical industry as a whole. Knowledge is power, and the more informed these companies are, the better equipped they are to provide solutions to current industry challenges.
Increased transparency has been a hot topic this year, with many prominent figures in health care calling for increased openness of medical software and the “liberation” of health data. HHS has taken huge steps toward this goal, and they have called for similar action from other health organizations housing large amounts of data. From the point of view of both a patient and a professional, I have to agree: set my data free!