The Federal Message is Loud and Clear: It’s Time for Patients to be Truly Empowered | Rajiv Leventhal | Healthcare Blogs Skip to content Skip to navigation

The Federal Message is Loud and Clear: It’s Time for Patients to be Truly Empowered

April 11, 2018
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“Who controls my health data?” is a question that the government is trying to create a simple answer to

A few weeks ago, I had to transfer money from one financial institution to another, and right before I submitted the transaction, a screen came up giving me three “transfer fee” options: one for $3 that would complete the transfer in 3 to 5 days; another $10 option for a one-day transfer window; and finally an option for $30 to complete the transaction on that same day.

While this probably sounds quite steep just to send your money from one place to another (and yes, it is steep), there is at least one silver lining to the whole process: I control my financial data and I have the ability to access it, check it, and transfer it somewhere else, essentially whenever and wherever I want.

But as most people already know, consumers hardly have that affordability when it comes to their healthcare data. I go back to an exchange had last year between former Vice President Joseph Biden and the CEO of Epic Systems, Judy Faulkner. The topic was access to patient records. According to Greg Simon, president of the Biden Cancer Initiative, who witnessed the exchange, Faulkner said, “Why do you want your medical records? They’re a thousand pages of which you understand 10”. To which Biden replied, “None of your business. If I need to, I’ll find someone to explain them to me and, by the way, I will understand a lot more than you think I do.”

There was plenty of reaction to that Biden-Faulkner interaction, with most of the debate around who actually owns patient health data that is inside electronic health records (EHRs). For the most part, people just bluntly assume that patients own their data (they say, “Of course we do, it’s ours!”), but it is actually not that simple. The Health Insurance Portability and Accountability Act (HIPAA) does not specify ownership, and state laws are inconsistent. So while it might seem blatantly absurd that you and I don’t have complete ownership over our health data, in reality, we don’t.

Right after that Biden-Faulkner exchange, I recorded a podcast with Niam Yaraghi, Ph.D., a fellow in the Brookings Institution's Center for Technology Innovation, and health IT researcher, who said that Epic is not a charity and that just because a patient desires his or her medical records doesn’t mean that the EHR vendor or healthcare provider has to give it to him or her for free. Coming back to my banking analogy, Yaraghi also said at the time, “You own every penny of your money in your bank account. Why are people completely OK with paying a fee to access their own money in a bank…but when it comes to medical data, it’s different logic?”

Granted, Yaraghi might be on somewhat of an island with these thoughts, but the point is that patient medical record ownership is not as cut and dried as some might think.

The Message from Federal HIT Leaders

That brings me to last month’s HIMSS conference in Las Vegas, where the message portrayed was as clear as day: a heavier push toward patient empowerment than perhaps anything we have seen before from federal health officials.

Indeed, it was Centers for Medicare and Medicaid Services (CMS) Administrator Seema Verma who announced early on in the conference the launch of a new initiative called “MyHealthEData,” aimed at revolutionizing the relationship of U.S. healthcare consumers to their patient data. According to a CMS news release, “MyHealthEData will help to break down the barriers that prevent patients from having electronic access and true control of their own health records from the device or application of their choice. Patients will be able to choose the provider that best meets their needs and then give that provider secure access to their data, leading to greater competition and reducing costs.”

At the same time, Verma also announced the launch of Medicare’s Blue Button 2.0—a new way for Medicare beneficiaries to access and share their personal health data in a universal digital format, according to CMS. An example of Blue Button 2.0 being used in action would be a patient accessing and sharing his or her health data, including prior prescriptions and treatments, with a new doctor. Verma noted that while the Blue Button initiative has been around for years, the data has been in raw form, such as a PDF or Excel document, without useful context.

Of course, MyHealthEData is just a campaign; it’s not a mandate, or even a pilot that will go through phases of research and studying. So it’s fair to ask: does this patient empowerment push have enough “teeth” and substance going forward? I personally think it does, especially when you consider the comments that were made by HHS (Department of Health & Human Services) Secretary Alex Azar and leaders from the Office of the National Coordinator for Health IT (ONC) during that same week of HIMSS.

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