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How Do We Balance Improved Outcomes with Protecting Personal Information?

Posted on July 29, 2015 I Written By

John Lynn is the Founder of the HealthcareScene.com blog network which currently consists of 10 blogs containing over 8000 articles with John having written over 4000 of the articles himself. These EMR and Healthcare IT related articles have been viewed over 16 million times. John also manages Healthcare IT Central and Healthcare IT Today, the leading career Health IT job board and blog. John is co-founder of InfluentialNetworks.com and Physia.com. John is highly involved in social media, and in addition to his blogs can also be found on Twitter: @techguy and @ehrandhit and LinkedIn.

There’s an interesting article by the Pacific Standard (never heard of them before now) about the “hidden market” of medical data that exists. The final paragraph provides a great summary of the challenges we face when it comes to health data:

There is no perfect way to balance the competing priorities of using big data for improved health outcomes and protecting our personal information. Opinions on which interests should come first will differ—and should. But the debate cannot be open, honest, or effective if major companies like Walgreens or Safeway are secretive about what they do. People are often generous when it comes to volunteering personal data for the purpose of advancing medicine. They are less so when it comes to enriching sellers of information. Either way, the proper course of action is disclosure. Simply put, if our medical data is being bought and sold, we deserve to know it—and have a say. Perhaps making our data available to others is as helpful to medicine as IMS claims. But shouldn’t that be up to us?

That’s the best summary of balancing improved outcomes and personal information that I’ve ever read. We all want better outcomes and I think that most of us believe that the right healthcare data will get us to better outcomes. We also all want our data to be protected from people who will use it inappropriately. The balance between the two competing priorities will never be perfect.

The reality is that there’s going to be more and more healthcare data available about all of us. Much of that data is going to be shared with a large number of organizations. Most people are just fine with that sharing assuming they believe the sharing will help them receive better care. However, there does need to be some mechanism of transparency and disclosure about when and how data is used. That doesn’t happen today, but it should happen.

The challenge is that pandora’s already out of the box. The data is already flowing a lot of places and putting in accountability now will be a real challenge. Not that I’m against challenging things, but we’re kidding ourselves if we think that accountability and transparency around where and when are data is shared is going to be easy to accomplish. First, companies are going to be dragged kicking and screaming to make it happen. Some because they know they’re doing some things that are at least in the grey area and some are totally shady. Others aren’t doing anything inappropriate, but they realize the costs to implement transparency and accountability for the health data they share is going to be very high. A high cost project that doesn’t add any more revenue is a hard business proposition.

While I’m not hopeful that we’ll see a widespread transparency about what health data’s being shared where, I do think that some forward thinking healthcare companies could push this agenda forward. It will likely happen with some of the companies who have avoided the grey and shady areas of health data sharing that want to create a competitive advantage over their competitors and build trust with their users. Then, some others will follow along.

What do you think that could be done to make health data sharing that’s happening today more transparent?

IMS IPO and Health Data Privacy

Posted on January 7, 2014 I Written By

The following is a guest post by Dr. Deborah Peel, Founder of Patient Privacy Rights. There is no bigger advocate of patient privacy in the world than Dr. Peel. I’ll be interested to hear people comments and reactions to Dr. Peel’s guest post below. I look forward to an engaging conversation on the subject.

Clearly the way to understand the massive hidden flows of health data are in SEC filings.

For years, people working in the healthcare and HIT industries and government have claimed PPR was “fear-mongering”, even while they ignored/denied the evidence I presented in hundreds of talks about dozens of companies that sell health data (see slides up on our website)

But IMS SEC filings are formal, legal documents and IMS states that it buys “proprietary data sourced from over 100,000 data suppliers covering over 780,000 data feeds globally”. It buys and aggregates sensitive “prescription” records, “electronic medical records”, “claims data”, and more to create “comprehensive”, “longitudinal” health records on “400 million” patients.

* All purchases and subsequent sales of personal health records are hidden from patients. Patients are not asked for informed consent or given meaningful notice.
* IMS Health Holdings sells health data to “5,000 clients”, including the US Government.

These statements show the GREAT need for a comprehensive health data map—–and that it will include potentially a billion places that Americans’ sensitive health data flows.

In what universe is our health data “private and secure”?