The good people at GE and JESS3 have come up with an HAI infographic.  It’s pretty, and it conveys the horrible information that many of us already know — healthcare associated infections kill about 100,000 people a year, and add $35 billion a year to our collective health care bill (here in the US of A); 5% of hospital inpatients end up with an HAI.

So what do we expect the world to do with this infographic?  The FDA has rolled out new cigarette package warnings, including graphic photos, that are presumably intended to so sicken potential purchasers of cigarettes that they drop the pack of cigarettes and run screaming from the counter.  In more measured terms, the FDA says:

The introduction of these warnings is expected to have a significant public health impact by decreasing the number of smokers, resulting in lives saved, increased life expectancy, and lower medical costs.

But what is the expected public health impact of publishing this infographic?

I would like to see GE, and/or others, fund the public health campaigns that are needed to accompany the release of such information.  GE is already doing some of that, to be sure, but a staggeringly large problem like the one identified here needs more attention.  The federales are trying to move the needle by refusing to pay for the cost of providing health care services required due to HAIs.  The government and providers are likely to be spending a lot of time and resources in line-drawing and finger-pointing, fighting over the dollars at stake, without pulling back and addressing root causes of HAIs in a systematic manner.

And what sort of campaign do we need in this circumstance?  A consciousness-raising campaign, so that (1) the empowered patient can insist on provider transparency, and create additional market forces pulling or pushing providers away from the marketplace that has allowed the preventable HAI count to swell, and (2) engaged providers can work to prevent the preventable HAIs and communicate the value and quality of care that they can deliver to patients and potential patients.

One possible meeting ground for like-minded patients and providers on this issue is the Society for Participatory Medicine (yes, another shameless plug for the Society and its journal, blog — yes, this blog — and listserv).  Join us!

Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.

Again, the infographic may introduce the problem to folks who may not be aware of it, but the real work lies in solving the problem, not just realizing that there is one.

A version of this post first appeared on David’s home blog, HealthBlawg.

So often, signs of the future are all around us, but it isn’t until much later that most of the world realizes their significance. Meanwhile, the innovators who are busy inventing that future live in a world of their own. They see and act on premises that are not yet apparent to others.

In the computer industry, these are the folks I affectionately call “the alpha geeks”, the hackers who have such mastery of their tools that they “roll their own” when existing products don’t give them what they need.

Watching the alpha geeks — people whom more traditional marketing analysts might call “lead users” — can give insights into the future directions of technology, gaps in existing products, and new market opportunities.

Who are the alpha geeks in health care?

Off the top of my head, I’d name a lot of the people who founded this site or founded organizations we talk about all the time.

Thinking more deeply, though, I realized that there are multiple categories: patients, caregivers, clinicians, pharma, public health workers, librarians, government (comments please: other categories?)

Re-reading Tim’s description, especially the line about how alpha geeks “live in a world of their own,”  I thought about the people I’ve met who most closely fit that description, who make a way out of no way — people living with rare disease. They are in the crucible. They “roll their own” by creating communities of health information exchange where none had existed.

Who would you call an alpha geek? What can the clinician alpha geeks learn from the patient alpha geeks? Is there a mechanism for that information exchange? What can the pharma alpha geeks learn from the public health alpha geeks? Is there a way to connect the disparate tribes? Or maybe you know about connections that I haven’t seen yet, in which case, do tell!

It was a provocative talk, because although “everyone knows” the Obama administration has mastered social media, there’s a real question of whether we out here actually use those blogs. And it had never even occurred to me to go there – I have about six zillion other blogs I want to keep up on, and besides, to me social media is all about conversations, not one-way publishing or one-way reading. I commented that the thing about the administration isn’t just that they publish, it’s that they seem to listen.

Anyway, when Aliya published another piece today, Administration urged to engage public on e-health records, I took a look. She spoke with Michael Painter of the Robert Wood Johnson Foundation, and the famous Brian Klepper of Healthcare Performance, inc. And something Brian said stuck in my craw:

In my view, there are parallel universes of health care reform discussion. One is what everyday people are saying and thinking. . . .And, yes, the White House hopes people will visit its site on reform and weigh in. The core problem here is that there is no political power center for regular people to glom on to health care reform.”

(Emphasis added.)

Think about that: the only people who will live or die, depending on how reform goes, have no power center in Washington.

It took me right back to Craig Stoltz’s excellent post last night about the new Declaration of Health Data Rights: Declaration of Health Data Rights: Aux Barricades!

Craig’s point is “The most visible and active ‘stakeholders’ in discussions about HIT so far have been … commercially self-interested players who may not [or, to be fair, may] have patient rights … top-of-mind.”

As I often say, I have nothing against business; I’m in business. But I assert that something is terribly broken if we – the ones who stand to live or die depending on this issue – have no power center to “glom on to.”

Think about it: all we hear about from DC is what the AMA wants, what pharma thinks, and so on. Where the hell is the voice of the patient?