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The Issue of Governance in Healthcare Big Data

  • by Lucas Mohammed
  • 2 Months ago
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At Rock West Solutions in California, brilliant minds are constantly at work looking to develop bigger and better ways to incorporate big data into the healthcare sector. They work on complex problems like signal processing and data analytics. All of the data their applications generate is intended to make healthcare delivery better, safer, and more efficient.

Everything about big data in healthcare seems like a good idea. And it is, for the most part. Yet all of this data has created a problem that has yet to be resolved. It is a problem of governance. In other words, who gets to decide how data can and cannot be used? And once data has been collected, analyzed, and stored, who watches over it to make sure it isn’t used for nefarious purposes?

Data Governance in a Perfect World

Rock West explains data governance as the management of data in terms of its availability, usability, security, and integrity. Let us take a closer look at each component:

  • Availability – The question of availability addresses who has access to data sets and for what purpose. Not all data is readily available to anyone who wants it, nor should it be.
  • Usability – The extent to which data is actually usable determines its overall value. Every data stream contains noise that has to be dampened in order to make the relevant data usable.
  • Security – This is self-explanatory. Data has to be kept secured in order to protect those to whom it pertains.
  • Integrity – The integrity of a given data set influences its usability and value. Moreover, integrity has to be protected over the long term.

Addressing these four components would seem like a pretty straightforward exercise. In a perfect world, every organization that collects data of any sort would adhere to the common principles of data governance at all times. But the world is far from perfect. There will always be those individuals and entities willing to step outside generally accepted practices in order to use data to their own gain.

A Government Solution

Issues like data governance often lead us to turn to government for solutions. That is where we are in terms of big data and healthcare. Already governed by the Health Insurance Portability and Accountability Act of 1996 (HIPPA), data collected by healthcare organizations must be kept private. However, current regulations only go so far.

When the HIPPA was enacted, big data was virtually unheard of in the healthcare sector. The legislation was intended to protect individual health records, like those compiled by primary care physicians. Collecting data these days goes way beyond those kinds of records.

As an example, Imperial College London made a major announcement earlier in 2019 detailing how they believe they can use artificial intelligence to better treat ovarian cancer. Their system uses big data to develop more accurate prognoses for patients. And the data they use and generate covers more than just individual patient records. It is data added to a central database purposely designed to get smarter as the years go by.

What happens to that data once it is collected? Who controls its availability, usability, security, and integrity? That is the big question. And unfortunately, there is no clear answer.

It would seem as though a government solution is the only solution. Though many of us may not be happy about more regulation, there doesn’t seem to be any other way to handle data governance in a world that relies so much on data for everything. Not only that, but the monetization of data demands some sort of governance.

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