Tag: Empowered patient

Shielding My Daughter’s Heart

A couple of years ago, I gave birth to a baby girl, Ada. She looked perfect, but the doctors told me she had a significant heart murmur. When I held her in my arms at night I could hear blood rushing through a hole in her heart that shouldn’t have been there.

My husband and I took Ada to a pediatric cardiologist, who said she would probably need surgery to close that hole. For an entire year of tests and hospital visits, we lived in fear that open heart surgery was just around the corner. And then one day it was. “It’s time,” the cardiologist declared, “That hole is dangerously impeding her growth.”

Was Open-Heart Surgery Necessary?

I am grateful to live in a time and place in which surgery—even surgery on a heart the size of a golf ball—is an option. This kind of procedure has undoubtedly saved many lives. But it’s not without risks. More than 100,000 people die in this country every year from preventable medical errors. And hospital infections are a serious problem, too. We didn’t like the idea of subjecting a life so new, so tenuous, to a procedure of such magnitude unless there was a clear case for it. I’m not going to sugar coat this: We were talking about sawing open my baby’s ribs and stopping her heart and lungs.

Why I Tattooed My Health Data Over My Heart | WTF Health with Casey Quinlan

WTF Health – ‘What’s the Future’ Health? is a new interview series about the future of the health industry and how we love to hate WTF is wrong with it right now. Can’t get enough? Check out more interviews at

How can patients help usher in a better future for healthcare? Start speaking up. LOUDLY.

In this WTF Health interview, meet one of health’s most outspoken patient advocates, Twitter voices (@mightycasey) and podcasters, Casey Quinlan of Mighty Casey Media, who talks about her patient journey as a cancer survivor — and why the awful experience led her to tattoo a QR code linking to her electronic medical record to her chest.

Casey’s ‘physical political protest’ is tied to her passionate views about the lack of data liquidity in healthcare and how patients suffer as a result. She’s launching a new “If-You’re-Selling-My-Health-Data-Cut-Me-In” Movement and weighs in on why more patients aren’t clamoring after their health data to push real change in the healthcare system.

Filmed at Health Datapalooza in Washington DC, April 2018.  

What Exactly Is Health 2.0?

Pascal Lardier, Director, International Events of Health 2.0, answers questions about the co-production of health by patients and physicians today and in the future.

Health 2.0. What exactly does this quite a new word describe? When did you use that word for the first time?

Pascal Lardier: It is a quite a new word indeed. Our first conference was in 2007 in San Francisco and at the time some people called the movement a fad. Since then our organization Health 2.0 has introduced over 500 technology companies to the world stage, hosted more than 9,000 attendees at our conferences and code-a-thons around the world, awarded more than $1,400,000 in prizes through our developer challenge program and inspired the formation of 46 new chapters in cities around the globe! The movement was obviously far from being a fad. Just like web 2.0 was a new version of the web, Health 2.0 describes a new era for health innovation where stakeholders collaborate, patients are empowered and the production of health becomes participatory.

Many people associate the word with social media and related things such as blogs, health platforms and health websites. Is that correct? How does “Health 2.0” differ from “e-Health” or “ICT”, for example?

PL: Communities such as online patient forums and the associated produced content played an important role in the Health 2.0 movement from the start. But it’s not just about social media and communities anymore: it’s also about patient-physician communication, personalized medicine, population health management, wellness, sensors/devices/unplatforms, data, analytics, system reform and more. In the beginning, health content became participatory. It is now becoming more and more personalized. All these profound transformations were calling for a new name and Health 2.0 was a good candidate for describing the extension of eHealth.

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How American Independence Created A New Kind Of Patient

The empowered patient, skeptical of professional authority, is not a new phenomenon: he was actually created by the American Revolution.

Reading through historian Gordon Wood’s Pulitzer Prize-winning book, The Radicalism of the American Revolution, I came across a passage describing how national independence from the British led to an independent turn of mind in other spheres. Wood writes that Charles Nisbet, president of Pennsylvania’s Dickinson College, complained as early as 1789 that Americans were carrying their reliance on individual judgment to ridiculous extremes. He fully expected, he said, to see soon such books as “Every Man his own Lawyer,” “Every Man his own Physician,” and “Every Man his own Clergyman and Confessor.”

In fact, New York’s Medical Repository wrote in 1817 of a shortage of “professional pharmacists” at a time when they did drug-mixing and diagnostic duties. But while the Repository acknowledged the lack of professionalism might lead to some mistakes, it continued that “these mistakes would be no more than occurred in Paris, London or Edinburgh, ‘where pharmacy, as a profession, is scientific, exclusive and privileged,’” writes Wood. (Emphasis in original) What a remarkable attitude!

Around this same time, the word “statisticks” appeared for the first time in American dictionaries. However, in America, there was a growing opinion that facts could speak for themselves without expert interpretation. As one popular journal put it in 1811, “The reflections arising out of [the facts] should be left to the reader.”

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The Problem with Transformation

Eric Topol wrote a post recently put up on THCB where he looks to a future enabled by emerging technology.

Just as the little mobile wireless devices radically transformed our day-to-day lives, so will such devices have a seismic impact on the future of health care. It’s already taking off at a pace that parallels the explosion of another unanticipated digital force — social networks.

Take your electrocardiogram on your smartphone and send it to your doctor. Or to pre-empt the need for a consult, opt for the computer-read version with a rapid text response. Having trouble with your vision? Get the $2 add-on to your smartphone and get your eyes refracted with a text to get your new eyeglasses or contact lenses made. Have a suspicious skin lesion that might be cancer? Just take a picture with your smartphone and you can get a quick text back in minutes with a determination of whether you need to get a biopsy or not. Does your child have an ear infection? Just get the scope attachment to your smartphone and get a 10x magnified high-resolution view of your child’s eardrums and send them for automatic detection of whether antibiotics will be needed.

Now, I am the first to confess my infatuation with technology.  I am also a very big believer in patient empowerment, which could be the one force strong enough to overcome the partisan politicians and corporate lobbyists resisting any positive change.  But there are several problems I see with this kind of empowerment with technology.

First off, the goal is not to find technologies that simply transform, but ones that move care to a better place.  Right now our system is running aground for one reason: we spend too much money.  Patient empowerment that improves efficiency of care is good, while empowerment that increases consumption or decreases efficiency is to be avoided if at all possible.  The technology mentioned in the article is predominantly data-gathering technology, increasing the amount of information moving from patient to physician.  The hope is that this will enable faster and better informed decisions, and perhaps some of it will.  But I can see harm coming out of this as well.

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