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Physician Calls For Widespread Patient Data Ownership

Posted on October 26, 2016 I Written By

Anne Zieger is veteran healthcare consultant and analyst with 20 years of industry experience. Zieger formerly served as editor-in-chief of FierceHealthcare.com and her commentaries have appeared in dozens of international business publications, including Forbes, Business Week and Information Week. She has also contributed content to hundreds of healthcare and health IT organizations, including several Fortune 500 companies. Contact her at @ziegerhealth on Twitter or visit her site at Zieger Healthcare.

At present, patients anywhere in the United States are entitled to access their patient records, but the records are typically controlled by providers. New Hampshire is the only state which provides citizens with legal ownership of the health information, notes Eric Topol, MD.

“That’s completely wrong. That has to get fixed,” said Topol, who spoke at the MedCity ENGAGE show last week. “It should be your data.”  In fact, he calls patient data ownership “a civil right that’s yet to be granted.”

Patient data ownership rules vary across the U.S. In many states, including Washington, Idaho, North Dakota, Minnesota, Wisconsin, Michigan, New York, Maine, Pennsylvania, and Nevada, there was no law in place as of mid-2015 which specified whether patients are providers owned or had property rights medical records. But in a large number of additional states, including Oregon, California, Texas, Georgia and New Mexico, state laws specifically state that the hospital or physician owns the medical record.

Long before EMRs went into wide use, ownership of medical records would occasionally come into dispute, such as when a practice went out of business or a hospital was acquired. The historic lack of clear case law governing such transactions would occasionally lead to major legal controversies during such transitions.

Today, the stakes are even higher, contends Topol, who serves as director of the Scripps Translational Science Institute at San Diego-based Scripps Health. To realize the benefits of “individualized medicine” – Topol’s term for “precision medicine” — patients will have to control their health data, he said.

“We are going to be leaving population medicine – where it’s one size fits all — in favor of individualized medicine,” Topol told the audience. With individualized medicine, patients drive their own care, he said.

The current centralized model of health data ownership actually poses a risk to patients, Topol argues, given the ripe, financially-attractive lure that big databases pose. “We need to decentralize this data because the more it’s amassed, the more it’s going to be hacked,” he contends.

So what of Topol’s vision for “individualized medicine”? Well, here’s how I see it. Topol’s comments are interesting, but it seems to me that there’s an inherent contradiction between one half of his arguments and the other.

If by talking about individualized medicine, he’s referring to what is otherwise known as precision medicine, I’m not sure how we can pull it off without building big databases. After all, you don’t gain broad understandings of how, say, a cancer drug works without crunching numbers on thousands or millions of cases. So while giving consumers more power over the medical records makes sense, I don’t see how we could fail to aggregate them to some degree at least.

On the other hand, however, it does seem absurd to me that patients should ever lack the right to retrieve all of the records from the custody of a provider, particularly if the patient alleges malpractice or some form of malfeasance. If we want patients to engage with their health, owning the documentation on the care they received strikes me as an absolutely necessary first step.

Does Healthcare IT Need Some Celebrity Endorsement?

Posted on March 17, 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.

Yesterday, I was part of the Dell Healthcare Think Tank event at SXSW. It was a great event that covered a broad range of topics over 3 hours of discussion with some really amazing people like Dr. Eric Topol and Mandi Bishop to name just two of the many. If you missed it, they’ve posted the 3 part recorded live stream.

At one point in the Think Tank discussion, someone suggested that maybe we needed Kim Kardashian to endorse a national patient identifier in order to get it the attention it deserves. The example of Dennis Quad was cited as the model. Basically, a celebrity who is impacted by some ineffective part of the healthcare system. Although, I don’t think anyone would have an issue identifying Kim K, so the national patient identifier and Kim K might not be a match.

There’s no doubt, celebrity has power that can be leveraged to get healthcare messages out. We all know what damage Jenny McCarthy has done with her comments about vaccinations. Something to remember about the double edge sword of celebrity power.

With this on the top of my mind, I was intrigued by this image that came floating across my Facebook page:
Colts Cheerleader Promoting Health

This seems like a mix of celebrity (I think NFL cheerleaders qualify) and sex mixed together to try and improve health. There’s no doubt this ad will catch the eye. I’m not sure this is the best executed campaign. I’m sure some people will try watermelon and tomato from this ad, but does it really promote healthy eating?

One thing is for sure, the right celebrity focused on the right topic can bring a lot of exposure to a topic. We saw that with the ALS Ice Bucket Challenge as well. Could we push some healthcare IT issues forward using celebrities? Which topics and which celebrities?