The Promise and the Price of Big Health Data

July 8, 2013 1:55 pm
Posted By: Jenny Jin


Recently, the hottest news on the TV was “Where is Edward Snowden”.  His leakage of classified defense information has brought up the discussion about information technology, data and privacy. The Edward Snowden incident directly highlights the possibility of health record confidentiality violations by an organization. It also indirectly emphasizes the dangers of collecting massive amounts of health data under the supports of ‘good works’, in a technological environment in which the inevitability of security breaches is a given. Not only is there threat of breaches of confidentiality perpetrated by well-intentioned or malicious actors, but the threat of misuse of the collected information. By storing these huge amounts of centralized patient data, certain parties are incentivized to develop ways to access the data.

“Our ability to exchange electronic information is already well beyond our ability to control it,” says John Leipold, CEO of Valley Hope Technology in Norton, KS, which makes electronic record systems for behavioral-health providers.  The assurance of “de-identified” information is also proving easier to promise than to deliver. “We have the technology to build a skateboard, and we’d like to have a helicopter,” says Dr. Halamka, chief information officer at Beth Israel Deaconess Medical Center in Boston, and co-chair of a federal advisory committee on data standards. The problems we are currently facing are not just technical hurdles, but also unclear regulations. Even the biggest patient privacy laws, HIPAA, contain broad exceptions to the disclosure of identifiable patient information. Included are exceptions for treatment, payment, and “health-care operations”. Properly used the exceptions ensure a functioning network of partners, but it also allows a wide range of doctors, nurses, pharmacists, and others to access a patient’s records without their knowledge.

Researchers, insurers, federal officials and doctors are already anticipating the prospect of mountains of data in digital format. Some are trying to lower costs by identifying effective treatments, others are finding new cures for illnesses that may emerge from the massive collection of data, and others are using data to optimize revenue cycles, just to name a few of the benefits envisioned by the large players involved. For the individual consumer of health care services, promises of better, more affordable care is a positive outcome, but the risk to employment and other biases based on their health data is very real threat.  Whether the potential benefits are worth the tradeoffs to potential harm is yet to be fully answered.