- As different states explore the benefits of big data and healthcare IT analytics, the element of patient privacy is invariably raised as a concern. The most recent instance where the complex innovation v. privacy debate arose was at the “Big Data and Health: Implications for New Jersey’s Health Care System” conference held April 4 at the Princeton University campus.
The purpose of the conference was to pull state thought leaders together and discuss big data in the as it relates to health, privacy, cost and transparency, and the opportunities and challenges in New Jersey. The case for big data growth is pretty clear at this point. “Policymakers need to understand that big data can save lives,” said Jeffrey Brenner, founder and executive director of the Camden Coalition of Healthcare Providers. “Legislation needs to be written and branches of New Jersey government need to cooperate with one another to agree upon a structure of how to make data available.”
The technology is in place to make the best use of big data from an organizational standpoint while allowing patients to control their information as well. Former National Coordinator Farzad Mostashari, visiting fellow at the Brookings Institution’s Engelberg Center for Health Care Reform, explained during his keynote that “[t]echnology is available for physicians to know the health of their patients and use that information for preventative measures any time they want.”
However, despite the fact that big data benefits have been proven, most healthcare experts agree that the patient privacy aspect of big data shouldn’t be taken lightly. Joel Reidenberg, visiting research scholar of information technology policy at Princeton and a professor at Fordham University’s School of Law, maintains that patient privacy risks will greatly damage big data progress if not made a priority.
And Julie Brill, commissioner of the U.S. Federal Trade Commission, added that big data benefits may need to be weighed for specific projects to determine whether potential privacy risks are worth it. “Privacy is an ethical discussion, it’s a structural discussion and it’s a legal discussion,” she said. “Rather than have this big notion that big data is going to benefit mankind, we have to be specific about the benefits of any specific project and balance that with the potential harms.”
Public policy on a state level factors into this equation as well, because these concerns aren’t going away any time soon and local governments need to get all of their proverbial ducks in a row and decide on how to (1) make the data available and (2) ensure that it remains private. Different states have separate patient privacy laws to adhere to, so how each state approaches the big data debate is worth watching as innovation advantages become more apparent.