Challenges for big data in health care

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The challenges for big data in most enterprises can be daunting. In the realm of health care, privacy and ownership complicate those challenges, according to a paper by DrBonnie360, a market research and consulting firm.

DrBonnie360 is led by Bonnie Feldman, who authored the paper along with Ellen M. Martin and Tobi Skotnes. In an opening indictment, Feldman said, "It's easier to write about the promises of big data than to realize them."

Here is some of what the report had to say about the barriers to realizing those promises: (The rest can be seen in the full report)

Data information and privacy is perhaps the biggest barrier. The report said that privacy issues have become increasingly urgent, and  increasing publicity and intense discussion makes it clear that most people are becoming concerned about protecting and controlling their personal data. This is especially true with regards to health and medical data. And it isn't always insurers or outside parties people must contend with. Sometimes they must battle their own doctors, such as when they block patients from accessing their own medical records.

And despite the tradition of doctor-patient confidentiality, Feldman says people are concerned about disclosure of personal health information to third parties, payers and other insurers, caregivers, next-of-kin, or spouses/partners acting on behalf of patients. In the past, the issue has been highlighted by the AIDS epidemic; tomorrow it may be genetic information.

People who think signing their HIPPA forms protects them are mistaken. Feldman said that while most of us consider control of one's personal health information and who has access to it a fundamental right, "it is a visible and politically potent issue."

She said that while HIPPA regulations are well-intentioned, they can make access more difficult to patients and caregivers. In a Markle Foundation survey called "Health in a Networked Life" it was found that in 2011, 80 percent of the public and doctors agreed that privacy safeguards for health information are important.

Security also presents a challenge. Concern over the unintentional exposure or loss of data to unauthorized parties, makes the idea of moving healthcare data to the cloud a much tougher decision.  

Businesses of all kinds are discovering that retaining ownership of and access to the data that is stored by their cloud provider is not as cut-and-dry as it should be. When it comes to healthcare, the issue gets thorny quickly.

Feldman says that most people assume that they own their own healthcare data, but that's not always true. As a consequence patient advocacy groups have sprung up to assist people in getting access to their own records. But it isn't always a matter of rights and ownership; sometimes, the technology itself is the barrier as data sits in "unintegrated data pools." Some resides with providers, some with payers. Other data sits in a researcher's computer or in academia. Developers and marketers have their share.

The paper identifies all the players in this drama and what their motives, intentions and tactics are, and is an essential tool for understanding the landscape of big data and healthcare.

For more:
- see Healthcare: Hype and Hope

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