What is Health 2.0?

Here's the definition I like:

Health 2.0 is participatory health care. The combination of content and community enables the patient to be an active partner in their own health care and the citizen to be an equal partner in improving the health system.

It's from the blog of Ted Eytan, a terrific MD who blogs about new healthcare methods from D.C.

Obnoxious ad against my hospital

A post on Paul Levy's blog about SEIU, a union I've mentioned before, led me to look into a new web site they've started, to slander Levy himself and the whole hospital.

As the post describes, they've put up signs at bus stops implying that the hospital is full of corruption and malfeasance, with a companion web site: "eyeonBI.org". I saw a "Share Your Story" link and went there to say how much I (and every employee I've spoken with) like the hospital, but look what I saw: (click to enlarge)



If you're not already familiar with this story, which has been going on for ages, it's summed up in the many comments on Paul's post.

Several months ago in a comment on a similar post I told an SEIU organizer "This gives organized labor a bad name. Why not go after some evil company??" And to me giving organized labor a bad name really is a problem. But, as shown in a link on Paul's post, it appears the union's leadership has ethical troubles of its own now:

The president of the Service Employees International Union said this week that he plans to consult with two labor reform groups in an effort to clean up his scandal-stained organization, beginning with a new ethics code and an internal watchdog commission.

But leaders of both groups said Wednesday that they were skeptical of Andy Stern's proposals.

"Why does he need a new code of ethics?" said Herman Benson, founder of the Assn. for Union Democracy. "People didn't know that what they were doing was wrong? It's preposterous."

New York Times special section on healthcare

From the e-patient blog Wednesday:

New York Times Health Section

The New York Times published an amazing array of health articles yesterday, each one of which is worthy of a discussion on this blog (and not just because we were mentioned in this one).

But I also want to take a minute to appreciate the entire online Health section of the Times, which consistently grabs my attention with its mix of articles, blogs, reference materials, and multimedia offerings. I love reading the comments appended to some of the articles and wish that more articles could turn into such forums. For example, the comments attached to You Can Find Dr. Right, With Some Effort are as useful and thought-provoking as the tips outlined in the article.

On a good blog, the comments are often as valuable as the post itself. (It's all about community, y'know.) A couple of comments on that post are thought-provoking, not the least of which is from Sarah Greene (manager of the Times online health presence).

The comment that really got me is from Christine Gray, a mother who experienced the rudest, most disempowering treatment by doctors who (she says) were annoyed that she wanted to see her daughter's lab tests, etc. Only when she got connected with a powerful peer patient community (on ACOR, where I found mine) did she learn that those same arrogant doctors had made several important mistakes, while belittling her.

You should go read Christine's comment. But in case you don't, I'll post my reply here, because something's starting to come clearly into focus for me: to a very large extent, healthcare delivery in America is a stinking mess. In this post I'm not talking about the financial aspect, or who has access to the best care - I'm talking about the simple ability to execute expected procedures competently.

Here's what I wrote:

Christine, thanks for your comment. The e-Patients White Paper e-Patients: How they can help us heal healthcare (PDF, wiki) details many such stories, but I'm frankly disheartened to hear that yours happened as recently as 2003.

As I talk with people involved in transformation of healthcare, and I raise various issues from that paper's research, I often hear "But we've already figured out how we're going to solve that one." Those people have surely never faced a loved one's medical crisis and experienced the consequence of the fact that it's not solved now. To the contrary, it's too often rigidly entrenched, as you describe.

Conversely, people not involved in transformation often don't want to hear the system's got problems - understandably. (It's like hearing your local fire department, whom you might need desperately one day, is a bunch of drunks.) In polite conversation we have a cultural taboo against saying anything like "These doctors blew it." Doing so often sounds like a kneejerk anti-establishment rant, or like the bozo who told me in May that "Chemo doesn't work. It's a fraud. All you need is ionized water." In the broad population, there is not much listening, yet, for open, transparent discussion of what works and what doesn't.

I myself only read that paper in January, and as time went by I saw that there were several kinds of e-patient stories, and I wrote about them. Many stories tell of doctors who are helpful and supportive of participatory medicine, and many more tell of doctors who are like the ones you describe.

What people don't realize is that today patients have access to far more power-bestowing information than we did 50-60 years ago. But even then, Dr. Spock was excoriated by many of his peers for telling mothers "you know more than you think you do." Clearly the doctors you faced still don't agree with Spock, a half century later.

As much as I love my hospital, they made some serious mistakes in my cancer case last year. After my nephrectomy the nursing team forgot to remove my catheter on the specified day (apparently that was important), and when I came back in for a follow-up urinalysis at a critical time a few days later (to see if my remaining kidney was working ok!), the lab simply lost my specimen. I couldn't just do another one; the moment had been lost. Yet the hospital had no process in place to make sure this potentially vital specimen wouldn't get lost.

We all need to be aware that healthcare in general is extremely (and I mean extremely) behind the times, compared to other modern enterprises. In a modern factory, things simply don't get lost the way they do in hospitals, and the reason is simply that not enough hospitals have thought out how to prevent the loss, or done anything about it.

To be sure, lots of good work is in process. But there's not nearly enough of it, and many facilities haven't even begun the process, and many more don't even agree there's work to be done.

Then we layer on top of that the attitudes of the subset of doctors who think they're godlike - again as detailed in many e-patient stories. Certainly not all of them are like that - mine last year were wonderful. But as Christine's story shows, there's way too much of it still out there. Is that who you want caring for you in your crisis?

I was fortunate to encounter one of those in my 20s - a guy who took offense at my asking if I'd get a scar from the procedure. I should have run, but I figured a doctor wouldn't be unprofessional, right? Well, he was - to remove a tiny basal cell on my nose, he decided to do a large crescent-shaped skin flap, and he never did come see me to discharge me - I had to check myself out. And within a year he'd skipped town.

I'm not disfigured from it but I learned my lesson: do not tolerate professionals who think we shouldn't be privy to our medical data, much less consider that we might have something to contribute. We do.

Many thanks to the Times for publicizing all these ways patient empowerment is happening.

Splitting this blog

Loyal readers have surely noted that this blog has wandered well afield of my "ePatient Dave" medical writings. Tonight, sitting home with a foggy headcold, I decided to use my diminished capacity to split the blog - to move the non-healthcare posts to a separate place.

So now I have two, and you can read whichever you want! There's this one, "The New Life of Patient Dave," and ... hm, what shall we call the other one? Dave's ImPatient Life. Yes, that will do nicely.

So far I haven't set up email subscriptions for it, but if you want, you can beg.

I may invite some guest authors over there. Fair warning; anything non-medical is fair game, and it's likely there will be some political content. (Oops, two such posts already.)

What's in *your* MIB?, part 2

A few weeks ago I linked to a video and post on the e-patient blog, about a woman who says she's been turned down for insurance repeatedly. According to Consumer Reports, she found out that the reason was an error in her MIB record. And as a consequence, her 401(k) has been completely drained by covering her ongoing health costs without insurance.

So I wrote my post, and for the time, that was that. But then I was contacted by an MIB official, and I had an extended exchange of emails with him. I asked the questions I posted on the e-patient blog:

• Is anybody, anywhere responsible for the accuracy of your MIB record?
• Is anybody liable for the consequences of reckless or negligent errors, or even for simple human mistakes?
• Is anybody required, under penalty of law, to correct such errors and make restitution for benefits that were wrongly withheld due to the errors?

In all our exchanges I didn't get direct answers to any of those questions, but here's the bottom line as I read it:

• Nobody (not nobody, not nohow) is responsible for whether their information in your MIB record is accurate. It's entirely up to you to detect and fix any errors. Most of the responses I got amounted to detailed repetition of how to request your MIB (during the hours that their robot phone answerer is turned on) and how to request a fix.
  
  
• Nobody (not nobody, not nohow) is responsible for any economic damage suffered by a patient as a result of such errors. Nobody, that is, except the patient (aka the victim).

In other words, the MIB and its contributors are not the least bit responsible for doing anything right, and if they don't, it's entirely and exclusively your problem.

I think you ought to contact them every year and get your annual free copy of what's in your MIB record, because it could be wrong, and it could cause you real harm.

But don't call right now - they shut off the phone answering computer on weekends and evenings, when most people are free to call and spend the seven minutes it takes to file your request through their robot.

Personally, I think the whole situation is disgusting, and I think some legislation would be in order.

Waking Up Is Hard To Do

OMG.

How often do my two after-work passions come together? Singing and healthcare? (And they're from Minnesota, no less, like me.) A group of nurse anesthetists, singing medical parodies.



(From the amazing Toni Brayer MD, via KevinMD, all brought to my attention by Paul Levy. Looks like these boys are goin' viral in the medical blogosphere.)

"Patient Centered Medical Home" makes it into NEJM

In May I posted some slides from PCPCC, the Patient Centered Primary Care Collaborative, which has been working for years to promote the value of having a "medical home," a place where doctors and staff know you. We grew up with a family doctor, but PCPCC says 40% of Americans no longer have a medical home; increasingly we're handled just by specialists, and so many of us only get care by going to emergency rooms.

The "medical home" is not a concept that's widely acknowledged in America as something we should strive for. Even though most of the industrialized nations in the world have it, and even though their costs are better, and even though their health is better, we don't have it as a common concept in our healthcare conversations.

I'm very, very pleased to say that today's New England Journal of Medicine has an important column about this concept.

How ironic that it's described as a "new model of care delivery." Look at the slides in that PCPCC post, with all the data they have from every other modern country in the world - this is a new idea?

Perhaps it's American arrogance, thinking "Well, if we didn't think of it, it's new." (In business, that thinking is a good way to go out of business, as the American auto industry has been doing for decades.) I don't know. I'm just heartened to see a major journal like NEJM finally recognizing this information.

What's in *your* MIB?

As regular readers know, the "e" in e-patient stands for "empowered, engaged, equipped and enabled." Usually we're talking about "power" in the sense of who has a say in a medical episode, but there's more to it than that: who owns your information, and who's responsible for keeping it accurate?

This is a story of a woman who's experiencing real harm from a doctor's condition coding error in her MIB record (Medical Information Bureau) and says her attempts to get it fixed were unsuccessful, leaving her in real financial trouble and completely powerless.

In the past I might have politely sat by and said "Gosh, that's bad news." But as an e-patient (empowered), I say "Hey, that's not right - that doesn't make any sense - can't we change this??"

I know the MIB exists to keep insurers from harm (fraud), but patients are vulnerable to harm, too. (Listen up; patient = YOU.) Looking into the story, I requested my own MIB record (like requesting your credit report) and was quite surprised at how one-sided the power is, in that world.

The full story, with short video, is over on the e-patient blog, where I also write.

Given the opacity of the system, I shudder to think about my chances of correcting any error.

See what happened after I spoke with them: part two of this series.

For more about the e-patient movement, see E-Patient? Yes, e-Patient.
For why I blog, with links to my excellent cancer story, see Why I Blog.

Takin' It Back with Barack, Jack

As many of you know, my sister Suede is a professional singer who's just released a new CD, "Dangerous Mood." Two of the songs have fabulous harmonica accompaniment from a guy named Will Galison. When I saw her CD launch tour's inaugural show in DC this summer, he was there, live.

Little did I know he can sing. Here he is with a swing group – and what a song!



(A plug – this weekend we're going up to see Suede at Jonathan's, a fabulous restaurant and music venue in Ogunquit, ME. We saw her last weekend in Provincetown, and even with a cold she still got a long standing ovation and hollers for multiple encores. What a trouper – can't wait to hear the full voice again!)

"e-Patients," Chapter 7: The autonomous patient, part 2

I'm writing this in March 2009, but to keep the thread together I'll back-date it to 8/24/08, just after the previous post in this series.

In the previous post I covered the first sections of Chapter 7. Continuing:

• The e-patient-receptive clinician: "When patients [can] collaborate with a non-paternalistic clinician, asking questions in their own way and communicating via e-mail when needed, actual consultation times typically do not increase. Patients are more satisfied and feel that they have spent more time with their doctors – even though, in some cases, they may spend less time interacting face-to-face." (Emphasis added.)
  
• I know this from first-hand experience: when I've communicated with my providers before a meeting, so the agenda is pre-set, I always leave the meeting satisfied. And it gives them a chance to be more prepared.)
  


• Clinician Support for the Expert Patient:
  
  • "Kate Lorig and her colleagues at the Stanford Patient Education Research Center were the first to identify and study the expert patient. They found that, compared with other patients, expert patients did a much better job of managing their diseases-improving their health status, coping more effectively with fatigue, remaining less dependent on professional care, and managing the many other challenges of their chronic condition."
  • "Anecdotal impressions so far suggest a level of commitment and enthusiasm from patients, healthcare professionals, and managers that will carry the management of chronic disease into a new era of optimism and opportunity." Liam Donaldson, chief medical officer of Britain's National Health Service, commenting on the NHS's Expert Patient Program.
    
    
• How e-Patients Can Help Healthcare: "Autonomous patients will educate themselves about their medical conditions and will manage more of their own medical care. In so doing, they will operate at a higher level:
  
1. setting and implementing their own healthcare agendas whenever possible;
2. diagnosing and treating more of their own medical conditions;
3. obtaining more tests and treatments on their own;
4. storing, organizing, and updating their medical information in more comprehensive and useful ways;
5. preparing themselves for their interactions with medical professionals."
   
   
• Patient-Initiated Quality Improvement Project: The story of a patient feedback form developed by e-patient founder Tom Ferguson MD, while he himself was a patient.
  
  
• Conclusions: "As Coulter warns, clinicians must accept patients as partners. If they do not, the healthcare system will be vulnerable to a widespread loss of confidence. But if they do, there is the potential for more patients to help themselves to the health care that they need."

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I think it's fitting to end by repeating what I said at the start of this chapter:

In some ways, it all comes down to who can make informed decisions, and "informed" comes down to who's got access to the information. That's what this chapter is about: the Internet has fundamentally changed who can get at information. (Hence, in the chapter title, "the reconfiguration of medical knowledge.")

The Internet also adds something that was never before possible: today we (patients in need) can talk to peers around the world whom we'd never have met, to share experiences and knowledge. In a complete inversion of the previous "knowledge/power pyramid," this sometimes means we the patients have access to knowledge that our doctors don't!

Think about that. Really think about it. I don't want to say "this changes everything," but it sure dynamites conventional wisdom about where to go if you want your life saved. Really think about that.

Plus, our ability to get at information and our ability to share it (and find new information from other patients) gives us an autonomy we've never had, forever freeing us from dependence on a single source of knowledge.

Ironically, this also reduces the historical burden on the physician to "know everything." And that completes the profound reconfiguration of medical knowledge.

---

I know I've read something that alters my view when I can return to the beginning and find that it has a whole new meaning. Here's the quote that opened Chapter 1 of this white paper:

[People] are suddenly nomadic gatherers of knowledge...
informed as never before...
involved in the social process as never before...
[as] we extend our central nervous system globally..."
--Marshall McLuhan, 1964

Don't you just love a visionary?