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.

"e-Patients," Chapter 4: The Surprisingly Complex World of e-Communities

Chapter 3 started with the observation that "the most effective way to improve healthcare is to make it more collaborative," then detailed the many ways this is already happening: Empowered patients, Equipped and Enabled by the Internet, are more Engaged in their care than hardly anyone realizes. (Those are the four "e"s of an e-patient, as defined by DocTom, whom CNN suggested was "the George Washington of patient empowerment.")

The previous post closed with an observation of my own:

This dynamic is already disrupting where value arises in healthcare. Any student of economic earthquakes can see the signs: when a new source arises that...
* adds significant value to an ecosystem
* is free
* and is not subject to the establishment's constraints,
... then the convergence of forces can make for an explosive shift in everyone's value proposition, everywhere else in the ecosystem.

In an environment where something can be created and flourish for free, unconstrained, and where there's a need for it, it's going to evolve rapidly - becoming rich and complex, and what people want.

Reading Chapter 4 was, for me, a whirlwind tour of what happens when freely available tools get into the hands of people who are seriously motivated – on their own behalf and then with a commitment to do good for others.

But rereading this chapter now, another story surfaces for me: too often, people think "we are not worthy" compared to doctors, and that's an error. Believe me, I like doctors; they saved me, and I'm not one. But believe this too: it's a complete error not to listen to experienced patients.


4. The Surprisingly Complex World of e-Communities

• Online support communities: as far back as 2001, 34 million people had used the Internet for a medical or personal issue. (The Web was only seven years old then.)
  
  
• This is Crazy! This information needs to be saved! (1995 - the genesis of ACOR, the community that served me so well 12 years later)
  
  
• Braintalk (1994): An e-Patient-driven Online Educational and Support Community. "We found [early neuro patient] online support groups especially intriguing ... They offered their members more convenient, powerful, and complex information and support than any of the face-to-face groups we had seen." But those groups were on isolated servers; two doctors created Braintalk to bring them together.
  
  
• Building from the Bottom Up. Braintalk's founders: "Many professional efforts to develop resources for e-patients have taken the traditional 'doctor knows best' approach, providing professionally created content in a top-down manner. 'In these provider-centered systems, patients and caregivers have little or no input or control,' Lester says.
  
  'Yet the communities we'd observed – in which patients had complete control – appeared to be doing quite well without professional assistance.' 'We decided that we would think of ourselves as architects and building contractors,' Hoch recalls, 'creating an online system in response to patient requests.'"
  
  Please think about this: Just last month a friend of mine had a major misdiagnosis turn around completely in 8 hours, with the help of today's Braintalk members – after a hospital full of doctors had completely failed, and had then stonewalled her well-informed questions about the basis for their diagnosis.
  
  
• Online Groups Supplement, but Don't Replace, Doctors: "Online groups ranked significantly higher than either generalists or specialists for convenience, cost-effectiveness, emotional support, compassion/empathy, help in dealing with death and dying, medical referrals, practical coping tips, in-depth information and 'most likely to be there for me in the long run.'... Specialist physicians were rated highest for help in diagnosing a condition correctly and for help in managing a condition after diagnosis."
  
  
• Forgotten Heroes (heroic caregivers): "Family caregivers of those with debilitating, chronic illnesses are the most numerous – and overlooked – health workers of all. There are 27 million in the U.S. alone. They outnumber all other types of health workers combined by four to one." ... "Traditional healthcare all too often leaves friends and families out of illness care. But spouses and other caregivers have so much to offer. Online support communities don't make this mistake."
  
  
• Putting a Human Face on Medical Information: "Learning you have a new disease can be an earth-shattering experience. One day you're "normal" and the next you're a "patient," perhaps for life. Connecting via an online support group with others who have the same condition can be immensely comforting"
  
  
• Special benefits for those with rare conditions: "Patients with rare cancers are often the first example of this disease their local oncologist has ever seen. So, most doctors aren't up-to-date on the latest treatments. e-Patients can learn about the treatments currently in use at the leading treatment centers from their online communities. And they can then pass this information on to their physicians."
  
  Week after week on ACOR, I heard of kidney cancer cases where a physician, probably overwhelmed with the explosion of medical information (see #6), were out of date. Informed patients – informed by their peers – made the difference.
  
  
• Other headings in this chapter need no comment:
  
• e-Groups are always there (24/7/365)
  
• Practical Day-to-Day Illness Management Advice
• Providing continuing support for the incurable
• A godsend for those with limited access to professional care.
  
• Keeping up on the state of the art for your condition

Please think about what it says at the top of the e-patient blog: "Health professionals can't do it alone." Neither can patients, but each can bring a lot to the table. That's why the e-patient team is talking about participatory medicine.

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As homework for the next chapter (e-Patients as Medical Researchers), please review Steal These Slides.

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e-Patient stories: several types

As I talk to people about "participatory medicine" and patient empowerment, I've needed to think out what the term really means when the rubber meets the road - when you (the patient) get responsibly involved in your own health care. So I've been listening for stories, and they seem to fall into two categories: where doctors were helpful, supportive partners, and where they weren't.

The sources of stories are at bottom. Here's my personal concusion.


Helpful, supportive doctors

Doctors today are under enormous time and cost pressures. The e-patient paper "e-Patients: How they can help us heal healthcare", written mostly by MDs, clearly documents how doctors no longer get paid for "going deep" to research every condition they encounter. Now, with the Internet, patients can help.

• In some stories, doctors admitted they were stumped. The patient and family did deep research and found new information that turned the tide.
  
  
• In other stories, docs felt they had the diagnosis, but welcomed it when the patient and family brought new information.

That's "participatory medicine" in action.


Not-so-helpful doctors

Other stories unfortunately echo the stereotype of doctors who think they're god-like.

• Some told of doctors who were arrogant. One patient was asked "Who has the degree here, me or you?"
• Some doctors poo-poo'd the patient's concerns (when they felt "This treatment doesn't seem to be helping me"), and the patients turned out to be right.

"E-patient" means you and I know we can participate in our care; expect to have our questions honored; are willing to learn how to research effectively.

Below is a list of the places I've come across stories. This isn't a scientific study - as one of the e-patient doctors says, "The plural of anecdote is not data." :-) This is just me sharing what I've observed.

Most of these stories are just a few sentences. Well worth reading, if you ask me.

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Sources of stories

Two weeks ago on the e-patient blog we started collecting e-patient stories. It started with an excerpt from Randy Pausch's best-selling The Last Lecture, demonstrating how he matched the e-patient model: actively engaged, learning everything he could, participating in his own care as much as he possibly could - and being fully supported in this by his care team.

Comments on that blog post added five more e-patient stories.

At least another dozen stories are in the e-patient paper (see link above).

Then, CNN.com drew quite a reaction when its "Empowered Patient" feature wrote a column "5 mistakes women make at the doctor's office". (That's a heck of a title for a feature about empowerment, isn't it?)

Dozens more e-patient stories were added to comments on that article and on the e-patient blog's post about it.