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Coal miners use to rely on canaries to let them know when an unhealthy level of gases had built up. The canary would end up meeting an untimely demise, but more often than not, the accompanying miner would end up getting out safely. Over time the idea of the coal miner has become romanticized, complete with pit helmets and pick axes. Without question, mining under any circumstances was a risky pursuit. Today it isn’t a coal or lead mine that presents the risk, it is the miners themselves that are worrisome!

These days it’s a group of folks called “data-miners”, who present a risk to patient privacy. Data mining requires data preparation which can uncover information or patterns which may compromise confidentiality and privacy obligations, even when steps are taken to safeguard one’s medical privacy. This can occur through data aggregation. Data aggregation is the process combining various pieces of data. That data is gathered, and put together so that they can be analyzed. The threat to an individual’s privacy comes into play when the data, once compiled, causes the data miner, or anyone who has access to the newly-compiled data set, to be able to identify specific individuals.

There are very legitimate uses for medical research and data collected in the cause of patient care. In fact, only through rigorous investigation is it possible to create the treatments and products necessary to improve the standard of living and conditions confronting members of the bleeding disorders community.  For instance, data used appropriately can be vitally important to drug manufactures working to create new and improved treatments and therapies.

However, in recent years, a lucrative “data mining” market has sprung up that is less about medical research and improvement and more about mitigating costs, profitability and market share. Pharmacies acquire prescription data in the ordinary course of business, and data mining companies purchase the prescription data, remove patient-identifying information, add additional information, and sell the combined data (which includes the names of individual physicians) to a variety of entities for high fees. The highest bidder may happen to be an insurance company looking to use that information to deny coverage or refuse individuals access to coverage in a high risk patient population.  The bidder may be a drug company who will use this information to track drug usage and improve sales.  The bidder may be a lab seeking to license information as part of an effort to manufacture a new generation of miracle drugs.  Part of the point is, one doesn’t know who will have access.

American novelist, Mark Twain once wrote there are three kinds of fibs, Lies, Damned Lies and Statistics. Increasingly data and information have become essential to the best practice of Medicine. We are now in an age governed by research and reason. Statistics and data, personal health information, genetic profiling, these all are the new battlegrounds where; battles over cost and expediency will confront face to face medical decision-making, personal liberty and individual freedom.

We together, must prepare to engage these concerns born of the information age. As we move forward, it will be increasingly important to engage in a dialogue about how data and personal health information are shared.  The community must join the dialogue focused on finding the balance between the privacy rights of consumers and the very real need for information, data and statistics. Questions abound but these few might begin to focus this necessary and prudent discussion:

  • Who is privy to what information?
  • How will ones’ personal health information be used?
  • What safeguards can be taken to ensure that data and private health matters remain private?  Particularly where small populations make it invariabaly difficult to ensure privacy.
  • If an individual’s personal health information or other privileged materials are sold or transferred do individuals have a right to know that?

This conversation will happen whether we choose to join it or not. In politics, decisions are made by those who show up. It is important that members of the bleeding disorders community and the vendors who serve it be engaged in the discussion.

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