What the "E" in E-Patient Really Means

Patients today are empowered, engaged, equipped, and enabled. Healthcare providers should respond, and should help patients with another important "e": expectations.

By now, you've probably heard of e-patients. But it means much more than "electronic patients."

"Our culture assumes doctors know everything and patients can't possibly add anything useful," writes Dave deBronkart, better known as "e-Patient Dave," in his new e-book, Let Patients Help!, a quick but enlightening read that will inform you that the "e" also means empowered, engaged, equipped, and enabled. "Today some add educated, expert, and anything else 'e,'" deBronkart writes.

I've made a career out of documenting the empowering effects of technology. In the 1980s, among other things, personal computers were a way to engage students of all ages through the interactivity of educational software. In the 1990s, the Internet equipped us to get the most current data. In the 2000s, Web services enabled us to build "digital nervous systems" that automated the publication of that data, and our ability to subscribe to updates through the power of technologies such as RSS and search technologies such as Google.

But here in the 2010s, it's ironic that the most personal of data we generate – that about our health – remains locked in healthcare's vaults for a variety of reasons. Some of this is just technological inertia. Some electronic healthcare record software bears a strong resemblance to 1990s-style enterprise resource planning (ERP) software designed to manufacture widgets. (That's changing, too, but it's a topic for another column.)

Patients are not widgets, yet the healthcare system sometimes treats them like widgets. But no widgets ever stood up after a life-threatening illness to tell their story. E-Patient Dave tells his story, and the story of the e-patient movement, in a book that will take you little more than an hour to read, but it will be an hour well spent.

I was delighted to learn that the e-patient movement goes back as far as The Whole Earth Catalog, a 1960s tome that helped inspire personal computing itself. I learned that the founder of the e-patient movement was a Yale Medical School graduate, "Doc Tom" Ferguson, who went on to publish Medical Self-Care magazine, and appeared on 60 Minutes. Truly a man ahead of his time.

DeBronkart's own story has been told many times, including in HealthLeaders Media. But in 2013, his lessons bear repeating. Last September, I bravely made the first prediction in my first predictions column that there would be a national day of patients calling providers, demanding their medical records.

It hasn't happened yet, but it still should. Meanwhile, we have deBronkart's book, and a rollicking YouTube video inspired by the e-patient movement.

Here are a few more top takeaways from Let Patients Help!:

• "In my view, treatment goals should arise in discussion between clinicians and patients." A laudable goal, but the devil is in the details. "Doctors only prescribe the standard of care about half the time," deBronkart says, and he punctuates this with a harrowing story of a patient who didn't receive the vaccines recommended after having a spleen removed, with dire consequences. "What if his family had Googled splenectomy, and said, 'Wasn't he supposed to get some vaccines?'"
• "There's too much for anyone to know everything, even your doctor." Years ago, a white paper by Doc Tom quoted Donald Lindberg, Director of the National Library of Medicine: "If I read and memorized two medical journal articles every night, by the end of a year I'd be 400 years behind." Years later, Lindberg told deBronkart the situation today is "much worse."
• "The Internet lets patients see information their doctors might not."
• "Let patients check the entire medical record, then fix any mistakes the patients find."
• "Clinicians should change shifts at the bedside."
• "They can't control costs if we hide costs from them."

On this last point, the recent publication of hospital costs by CMS may lead to a patient-fueled Cambrian explosion of apps devoted to helping patients compare those costs. There's precedent for this, when Web programmers "mashed up" geographic data with crime data to vividly inform citizens about the distribution of crime. There is no reason not to expect CMS data to be similarly mashed up in the months ahead. Soon, such mashups will be available on mobile phones, ready to be used for everything from a standard doctor visit to comparing costs of ER visits to urgent care visits, perhaps at locations across the street from each other.

To e-Patient Dave's credit, he doesn't believe that giving information to patients, however necessary, will be sufficient to improve healthcare. "Information alone doesn't change behavior," he writes. "Even for smart people." We must also "make it easier to do the right thing," and make the messages that healthcare delivers to patients clear and concise. He recounts the great story from former Wired magazine executive editor Thomas Goetz, who asked the magazine's art directors to make his blood test results look like an investment report. "They came back with snazzy, easy-to-read graphics: a bar for each number, green at the good end, red at the bad end, and an arrow showing where he sits."

DeBronkart also notes that through the Internet, patients are sharing more information about the side effects of treatments and procedures than they typically receive at their traditional points of care. In fact, in his own recovery from kidney cancer,deBronkart's oncologist, David McDermott, MD, told him, "I'm not sure you could have tolerated enough medicine if you hadn't been so well prepared."

There's one more "e" that deBronkart tackles in the book's appendix, and in many ways, it's the biggest "e" of all: expectations. "Medicine can be dangerous, and clinicians work without a net," he writes. "Medicine is complicated and our systems are not fail-safe."

Sometimes, fallible systems can be made safer. DeBronkart reveals that "anesthesia errors were greatly reduced when the hoses for different gases' hoses were made to be different sizes, so you can no longer pump the wrong gas into the wrong hose … in medicine, such protections are often absent."

As you try to implement "patient engagement" in your health system, remember that it's all of a piece. Hear the patients. Let information flow. Manage expectations. And look for clarity in every process and technology, to avoid errors and speed workflow. That's true engagement.