At the recent Cinderblocks2 conference, ePatient Dave DeBronkart told attendees that his doctor prescribed the Internet, where he was empowered by community and information.
In conversations about digital health, we frequently use terms like mHealth and eHealth, whose often-overlapping meanings are difficult to define to outsiders using less than 100 words. Essentially, they refer to methods of care delivery.
At first glance then, the term ePatient might seem like a natural offshoot of the rest of the digital health vernacular. However, ePatient means more than just electronic patients.
The term ePatient was coined by Dr. Tom Ferguson (1943-2006), who founded the movement and website e-patients.net. The “e” in ePatient means: “equipped, enabled, empowered, and engaged in their health and healthcare decisions.”
With health information readily available, and numerous devices on the market for tracking our own health metrics, you might assume that the number of ePatients would be growing quickly. It may be true that mHealth and digital devices have helped equip and inform patients; however, information alone isn’t enough to change behavior. If it were, we’d all be vegetarians, at our ideal body weights, walking 10,000 steps per day, and sleeping 7-8 hours each night.
According to Dave DeBronkart, a cancer survivor and patient advocate frequently referred to as ePatient Dave, there’s a difference between just being online and being a true ePatient. Speaking to Cinderblocks2 attendees (nuviun’s Jenn Lonzer was there) earlier this month, ePatient Dave said: "Today, everybody—including disempowered lunatics—is online."
Indeed, being online is easy. Using the information we find there to inform our lifestyle choices is another story.
An incidental finding
Although it is hard to imagine that such an enthusiastic advocate was ever not equipped, enabled, empowered, and engaged, there was a time when DeBronkart was a patient. It wasn’t until he brought up a stiff shoulder in a routine physical exam when his world started to change. After reviewing the x-ray, his physician, Dr. Danny Sands, called DeBronkart with the news that his shoulder would be fine—but there was something in his lung.
When they found DeBronkart’s renal cell cancer, it had already advanced to stage 4, grade 4. The median survival was 24 weeks.
Upon receiving such news, some people, according to DeBronkart, feel scared and just want their doctor to take care of them. But he wanted to do something—to feel as though he weren’t powerless. To do this, he needed information. DeBronkart told us:
My doctor prescribed a kidney cancer patient community on ACOR (Association of Cancer Online Resources). I love the look on doctors’ faces when I say: ‘my doctor prescribed the Internet.’ People tend to think simplistically about health information seeking. But we have this urge for certainty – especially when we’re desperate.
Lately, ePatient Dave is focusing on the empowering part of the definition of ePatient. He is considered to be a thought leader in a growing movement demanding interoperability in health information technology and full access to electronic medical records for patients.
But what does it mean to be an empowered patient? ePatient Dave told us: "In the 60s I learned to think of a disempowered person as someone who says: there’s nothing I can do."
ePatient Dave referred to the World Bank’s 2002 definition of empowerment:
Empowerment means increasing the capacity of individuals or groups to make choices and to transform those choices into actions and outcomes. An empowering approach to participation treats poor people as co-producers with authority and control over decisions and resources devolved to the lowest appropriate level.
By substituting patients for poor people in the above statement, you start to see what ePatient Dave is getting at when he talks about empowering patients.
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