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.

Apps for America Contest Winners – Clay Johnson of Sunlight Labs will present the awards. (Check out the submission by hometown and e-patient favorites Regina Holliday and Ted Eytan.)

Open Government Ninja 101: Skills, Strategies, and Stealth – David Hale will tell the inside story of Pillbox, the result of a partnership between the National Library of Medicine and the Food and Drug Administration. (I saw an early prototype at HealthCampDC and resolved to get on Twitter so I could follow David & the others at that meeting — it was that transformative.)

Collaborate, Build, Deploy, Repeat: The Next-Generation Emergency Response Platform – Andy Carvin, Noel Dickover, Patrick Meier, John Crowley, Heather Blanchard, and Walton Smith will explain how online tools can be deployed to help people caught in catastrophic disasters worldwide. (Check out Crisis Commons for a preview.)

An App We Can Trust: Lessons Learned in Post-Katrina New Orleans – Denice Ross will show how her team used U.S. mail delivery data to create an ad hoc neighborhood census so services could be sent where they were needed most. (What are some other unexpected sources of data which might transform health care delivery?)

Healthcare Needs a Redesign – Jay Parkinson, now of The Future Well, will talk about what the government can do with technology to foster change in health and medical care. (Jay always blows people’s minds and I bet this will be no exception.)

How Open Data Can Improve America’s Health – Todd Park, CTO of the U.S. Dept. of Health & Human Services, will light up the place with his enthusiasm for his topic. (Catch his act – and count the “mojo” references – in this video with Aneesh Chopra. Wait, I mean Aneesh Chopra!)

Joe and Terry exemplify the participatory medicine movement. He’s a pharmacologist, and she’s a PhD medical anthropologist, studying what people do in a given culture (in this case, ours). Our founder “Doc Tom” Ferguson lists them as his advisors in his White Paper’s acknowledgements.

Theirs is a story of conversion based on undeniable evidence gained by listening to patients:

“We were the country’s leading generic enthusiasts,” he told me recently. But over the last eight or nine years, Mr. Graedon began hearing about “misadventures” from people who read his syndicated newspaper column, also called The People’s Pharmacy.

The stories were typically from patients who were switched from a brand name drug to a generic one and had side effects or found that their symptoms returned…

The Times article spells out the issue: to the FDA, a generic is the same if it has “the same active ingredient, strength and dosage form.” But the citizens on the People’s Pharmacy discussion forums report that’s not true for them – and new research the Graedons sponsored shows that another variable, the release rate, varies. The body might well respond differently if the drug arrives in the cells at a different rate, but the FDA doesn’t look at that. People’s Pharmacy convinced ConsumerLab.com to do that research.

E-patients who want to take responsibility for their own care need to wise up and speak up. In many ways the FDA’s processes prevent junk from entering stores, but it’s a mistake to expect perfection.

Listen to your body. If your insurance company switches you to a generic, pay attention to your response. Or even if it doesn’t! If your response to a medication changes, tell your medical advisors.

Here is a sample of frequently-asked questions and my current answers. Please add your questions and answers in the comments: What are you curious about when it comes to technology’s impact on health care? What resources do you recommend?

Is a cultural shift affecting health care?

Yes. Thanks to the internet, people increasingly expect to have access to information.  They increasingly expect to be able to comment on and easily share information.  And it turns out that participation matters as much as access.

This is my favorite topic and I could talk for hours (or for 4:21; 4:44; 3:06; or 4:50).

How do people judge the quality of health information online?

The best they can, but probably not the way you think they should. However, we may have bigger fish to fry in health care.

Follow me on this one: Most people’s first stop for health information is a general search site. Google dominates the search market. A British Medical Journal article found that Google is a pretty good diagnostician. Very few people report bad outcomes from their online health research.

UPDATE: I stand corrected on my citation of “Googling for a diagnosis” thanks to the comments below and those attached to the original BMJ article. Thank you!

But wait, who’s in charge of vetting health information online? Shouldn’t we be concerned about this?

Nobody’s “in charge” and to some degree, yes. The base of the internet population is broadening to include people with less education and lower health literacy/numeracy. E-patients with a high school degree or less are more likely than better-educated e-patients to say they were confused by the health information they found online. But note that the two groups are equally likely (and more likely) to say they felt confident to raise new questions or concerns with their doctor, too.

For more on the “who’s in charge” and “what advice can we give consumers” please see:

• Tell the FDA the Whole Story, Please.
• How Do People Evaluate a Web Site’s Credibility? (2002, but I don’t think it has been topped by a more recent study)
• Carl Sagan’s Baloney Detection Kit
• Medical Library Association’s consumer guide
• Alicia White’s “Keep Calm and Carry On” advice for reading health news (PDF).

What are doctor’s attitudes?

I don’t know, but Manhattan Research and ThinkHealth do.

Are patients ready for this?

The Center for Studying Health System Change’s study measuring “patient activation” is one indicator. The central role of family caregivers is not addressed in the study, however. See the comments on this post, for example: 41% of Adults are “Activated Patients”

Another indicator is the relentless popularity of health information online. Lots and lots of people are looking up information on all kinds of health topics. (Hey E-patient Dave, are patients ready for this? :)

What about privacy?

Daniel Solove’s taxonomy of the word “privacy” has forever changed my thinking about the changing nature of personal information. In fact, I try to avoid using the word at all (instead: confidentiality, security, anonymity…)

Deven McGraw, Director of the Health Privacy Project at CDT, is a good source on health privacy regulations and enforcement. Jules Polonetsky, Director of the Future of Privacy Forum, is a more general source.

E-patients.net has a few posts on the topic of health privacy and I am happy to provide contact information for sources on all sides of this question. (Nominations welcome in the comments!)

What about hospitals? Are they using online tools?

I don’t know, but Ed Bennett does.

Does the internet cause cyberchondria?

Caution: “cyberchondria” is a loaded term.  E-patients.net has hosted discussions of how to describe people who use the internet to gather health information. For example: Googlers vs. e-patients vs. cyberchondriacs. Amy Tenderich of DiabetesMine had another good take on this topic:  “Patients” versus “Health Care Consumers”? Both, If You Ask Me. We also unpacked a Microsoft study of “cyberchondria” (be sure to read the comments on all of these posts).

What business opportunities are there in this field? What does the future hold?

I do not endorse companies, people, or policies. I try not to make predictions about the future. But I can say that I am watching the spread of wireless internet use very closely. Wireless access has a significant, independent effect on how someone uses the internet and it’s the trend I am most excited about tracking over the next year or so.

I hear from start-ups and established businesses every day (yes, every day) who would like me to publicly recommend their work. I can’t. However, I’m happy to hear from them and would love to hear from even more — via email or here in the comments.

OK, I’m serious about this: I love answering questions and, even more than that, I love being useful.  So help me out:  What questions do you have?  What answers would you like to provide?  What resources did I miss?