In all the sturm und drang over the US health care system in the last couple of years – and the last many decades – one voice seems to be largely missing in the discussion.

We’ve heard from health care providers – hospitals, doctors, et al.

We’ve heard from insurance companies.

We’ve certainly heard from politicians.

We have not, however, really been hearing from patients, unless some disease sufferer with a story to tell to support the POV of a health care provider, an insurer, or a political position gets trotted to the microphone to tell his or her story.

As social media rises as the brave new communication platform for any and all global-village ideas and events, health care is starting, sloooooowly, to dip its toe into social networking as a tool to get their message out. What we have not seen, though, is a lot of listening, other than the usual suspects listening to (and yammering at) each other.

There are a number of community sites that have grown up around specific conditions and issues – Fran Drescher’s Cancer Schmancer community and Lance Armstrong’s LIVESTRONG efforts around cancer spring to mind.

Microsoft has launched, and Google’s got Google Health.

Patients are out there: on Facebook, on Ning, on Twitter, and other online community sites like However, less than 20% of doctors are currently using technology to manage their patients’ medical records – given that resistance to technology, combined with the strictures of HIPAA (which I swear must mean Health Insurance Paying All Attorneys), it’s easy to see why the health care industry seems to be MIA in the Web 2.0 world.

One of the reasons cited by health care providers for not using web tools to communicate with their patients is privacy concerns. That is a legitimate concern, but I think it’s being used as a smokescreen – there are plenty of security apps and protocols available that would allow a dialogue between doctors and patients without having the conversation become Twitter status updates.

How refreshing, even revolutionary, would it be to have a way to communicate with your doctor and his/her staff online? To log in, schedule an appointment, enter your blood sugar numbers or blood pressure, request a prescription refill, ask a question, get a referral, download your medical records.

The health care sector has been losing the trust of its customer base for a long time – gone are the days when doctors were looked at as elevated beings who knew way more than the average dude (dude, in this usage, is gender neutral).

Doctors can take some of the blame there, since they’re not batting 1.000 on calling out the bad apples in their bunch, and have, as a group, been acting as the supply-chain for the pharmaceutical industry more than is, um, healthy.

The pharma industry takes some heat on the trust gap, too, since they seem to be all about “ask your doctor” and not so much about “you’ll be able to afford this stuff”. And don’t even mention Celebrex or Vioxx…

These revolutionary web-enabled conversations would allow doctors and other health care professionals to start to build those one-on-one and one-on-many trust relationships that could actually bridge that trust gap. Even help us understand, manage, and maintain our health.

Patients need to take the lead here, I believe, because left to their own devices doctors, hospitals, insurers, and politicians will continue to talk at each other, and not listen to the ultimate consumer of health care: the patient.

That’s my story, and I’m stickin’ to it.

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Health Care Storytelling
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