Connected Health: Wired patients become part of the cure

A story in The Boston Phoenix described a woman who needed life-long support after surgeons removed a benign tumor from her brain.

“The Internet has been a real salvation for me,” (she) says. She’s so cyber-centered, she can’t quite separate herself from the various PCs and laptops scattered around her cluttered office. Unable to remember a name, she pauses. “There are some words I’m not able to access right now . . . I like to say I had a Pentium,” she says, referring to her brain, not her computer processor. “Now I have a 286.”

The computer access that changed (this woman’s)  life promises to revolutionize the role patients play in shaping their own treatment. In the past, doctors gave orders and patients complied. Now that patients can seek out the same journals, studies, and specialists doctors consult to make decisions, the balance of power is shifting.

And shift it has. Since I wrote that story in 1998, the Internet has spawned a movement of wired patients. Find all the links you need on E-Patient Dave’s page, which the tireless  New Hampshire activist calls “The Voice of Patient Empowerment. ”   

We’ll see Dave deBronkart this week at the Connected Health Symposium in Boston. From the program: 

The Way Forward: Reform’s New Focus on Health and Wellness, Independent Aging, Chronic Condition Self-Care and the Tools That Support Them

As gridlock threatens elsewhere, the responsibility for driving change falls directly to us — the patients, payers, physicians, hospital leaders, entrepreneurs and IT execs who experience healthcare every day. Please join us in Boston in October. Together we’ll discuss and debate the means of moving care beyond the hospital and clinic and into the day-to-day lives of those who need our help.

Parnters’ Center for Connected Health has a broader mission:

The term “connected health” reflects the range of opportunities for technology-enabled care programs and the potential for new strategies in healthcare delivery.

The Center for Connected Health, a division of Partners HealthCare in Boston, develops innovative and effective solutions for delivering quality patient care outside of the traditional medical setting.  The Center engages in pioneering research in a wide range of connected health-related areas and works to advance the field through its convening and publishing activities.

The Center sponsors the meeting, but,patients play a big role. 

For more on the wired patients, see the The Society for Participatory Medicine or this recent story in SciAm.

 Individuals are becoming more informed, choosy consumers. Moreover, their charge to take over their own healthcare goes even deeper than traditional approaches to health. In some cases—more than imagined by many industry experts—patients already opt for lifestyle changes over prescription medicines when possible. In addition, consumers insist on evidence, such as examples of real-world outcomes from patients like themselves, before they will pay for a treatment or endure one that might not produce the desired outcome.(See graphic here.)

 Still health information does not come without its problem and not much has changed since I wrote this in the Phoenix 12 years ago. The mantra I give to my writing students — know your source.

The benefits are enormous…. But so are the risks. For every Web site hosted by a well-credentialed health center, there’s one set up by a con artist selling the latest miracle cure. The question facing the medical community is this: now that the Internet is providing access to reams of medical data, will the typical patient translate it into better health care or simply get lost in a stew of information?

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4 thoughts on “Connected Health: Wired patients become part of the cure

  1. Wow, was that the Phoenix cover from 1998? I love it!

    I’ll drop you a note… current and prospective Boston members of the Society for Participatory Medicine are welcome to our first annual east coast F2F reception, Tuesday evening at the Liberty Hotel. Details here. (I hope to see you there, Tinker.)

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