KnowHow: The FDB Blog

National Health IT Week 2013 Report: Who Owns Your Personal Health Information?

Doc charting in tablet
Corporate Perspective, Government, Transformational Change
Friday, September 20, 2013 by Tom Bizzaro, RPh

This week, I attended National Health IT Week in Washington DC. There were a number of seminars, meetings and celebrations focused on the growth of health IT in the United States. On Monday there was a Consumer Health Summit held by the Department of Health and Human Services (HHS). In my experience, I have never seen faster growth in the adoption of health IT. I think we are way past the tipping point. Today, in many health professions, you no longer decide if you are going to use an electronic health record, but which one to use.

As an industry, we have a huge opportunity to promote and improve the sharing of electronic health information. The patient is now in a position to get access to their health record to examine their information and make a better informed decision about their own care. They will have an opportunity to share that information with others who may have a better understanding of what the record is saying.

Consumers now have many ways to access their health information. There is still debate about who owns that information. Why this debate even exists is a bit of a mystery to many, including me. Lots of people are benefiting from the information gathered in a health record; research is being done, financial decisions are being influenced, and lots of people see the electronic record as an unmined data bonanza.

All I can say is this: I will tell you who owns my health record: I do. I’ll tell you who owns your health record: you do. Yet, there are still a lot of folks who do not want to accept this. I would say to them: Get used to it because in the future, this will no longer be debatable.

What do you think? Is healthcare improved when consumers have access to their health data?

About Tom Bizzaro, RPh
Tom Bizzaro is vice president, health policy and industry relations for FDB where he has responsibility for proactively monitoring all healthcare policy issues and proposals emanating from both the federal and state governments as well as participating in health policy initiatives related to the use of electronic drug information. Connect with Tom on Twitter and  LinkedIn.

Comments :
Laura Inniger said:
9/25/2013 11:02 AM

I wonder what having ownership of our information actually means in practice. Do we as consumers have a direct impact on what is recorded or how it is shared? This reminds me of an episode of Seinfeld in which Elaine thinks her doctor has written a negative comment about her in her medical chart and desperately wants to see her doctor's notes. No matter what lengths she goes to, including seeing another doctor, she only manages to sneak a peek and has no control over what's written in her chart. With the complexity and diversity of electronic health records, the use of anonymous data for research, reporting to insurance companies, and multiple providers, I might respond to the idea of having more access to my health data with analysis paralysis. Where do I start and how far and wide have various parts of my information been distributed? If we as consumers do develop a sense of ownership in our health data, maybe there's the potential for becoming more actively engaged in our own health care - but this may depend on the collaborative efforts of providers and patients.

Gregor Fisher said:
9/25/2013 1:34 PM

This is a very thorny and thought provoking issue. I like, and agree, with your perspective that we own our own health records. The rub is that your electronic health record is not in your possession. It is in the database of a legal entity called a healthcare organization. We can say that we own our data and the law can agree with us, but the fine print of these organizations may render that declaration meaningless. As with so many things we do online where we give our information away, we sign legally binding agreements (online) that give the organizations that have our information a lot of discretion in how they use it. In essence, we may own our information but it is not in our possession and we sign away much of the control we thought we had over it. Shy of making our medical information public for non-medical purposes, all bets are off in terms of what these organizations may do with our information. There are many uses of our information (medical research, marketing, process improvement) that these organizations may surreptitiously get you to agree to with a simple click of the mouse. Beware the mouse!

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