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 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."

---

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?

"e-Patients," Chapter 7: The autonomous patient, part 1

Twelve days ago I posted about Chapter 6 in this series. It was the most difficult chapter to absorb, at the time, but Chapter 7 has stopped me in my tracks: I've been thinking. (Then I got the cold, during which my chorus also had a performance, yadda yadda.)

Apologies for the delay. Let's resume.

---

This is the 7th post in a series summarizing the e-book "e-Patients: How they can help us heal healthcare." The starting post is here.

7. The Autonomous Patient and the Reconfiguration of Medical Knowledge

We must redefine the patient's role
to emphasize autonomy, emancipation
and self-reliance instead of passivity
and dependence.
—Angela Coulter

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." That completes the profound reconfiguration of medical knowledge.


Topics in this chapter:

• Introduction: 3 out of 4 medical episodes are handled without a clinician, and 19/20 are partly or entirely self-managed. Only 5% are managed entirely by physicians. Could it be there's more genuine capability in lay patients than we've assumed?
  

• The changing medical paradigm: patient web sites become the most useful sites (to patients). One researcher wrote:
  
• "In the judgment of those who really count – e-patients themselves – the most useful online information and guidance available on a given medical topic often comes from online patients (e.g., patient webmasters and e-patient groups) rather than medical professionals.
• "It is these e-patients themselves – and not their clinicians – who choose the online resources they prefer. And it is they who decide when and how to use them.

• Who's in charge here, anyway? The stark contrast between the past's closed access to medical info and how that's been exploded by the Internet.
  

• The configuration of medical knowledge in [last century] medicine: Some of the items in this section will pop your eyes open. Personally, I realized that these nasty tidbits are one consequence of not having access to the knowledge, so we had to go through a closed society to get it. We don't have to, anymore.
• The only limit, frankly, is how many of us know it's happened, and have access to the Internet (no small issue, to much of the planet's population).
  

• The pitfalls of paternalism: "Patients were considered incapable of understanding and taking charge of medical matters. ... The model for most health care is still 'doctor knows best'... The problem with this template, apart from its essentially authoritarian nature, is that the doctor may, indeed, not know best. ... Example: It took 60 years to establish that, for many patients, a simple mastectomy is just as good as a radical one. ... But in many parts of the country, mastectomy is still often the only option women are given."
  
• Think about that, too, if you still feel an M.D. degree guarantees greater wisdom.
• And if we can't be sure MDs know best, where can we turn? That's the point: we turn to ourselves to be responsible.
• We do consult our physicians, but we also gathering what info we can, and we check with our peers to see how different approaches have turned out.
• Bottom line, we decide for ourselves which resources are most valuable.
  
• Sometimes it is indeed our doctors. (That's how my peers steered me to my oncologist.) Sometimes it's elsewhere.
  

• The e-patient-resistant clinician: A brief section: "We have used this term to identify those health professionals who refuse to acknowledge their patients' competence or to accept their influence."
  
• Here's a recent example from May 2008: responding to a blog post on CNN, Carol K said when she asked her doctor about a treatment, he responded "Who's got the degree here?" (btw, his diagnosis turned out to be completely wrong.)
  

• Moving beyond medical paternalism: "Coulter proposes that patients be treated as '…responsible adults, capable of gathering and assimilating information and of learning the skills needed to provide much of their own medical care.' The clinicians' roles in 21st century healthcare will increasingly be to support their patients' own initiatives, to encourage patients to practice self-managed care, to help patients acquire the information, skills, tools, and support they need, and to serve as advisors along the way." You may want to again review "Steal These Slides."
  

• 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.)
  

Continued in the final segment.

"e-Patients," Chapter 6:Learning from e-Patients

This is the 7th post in a series summarizing the e-book "e-Patients: How they can help us heal healthcare." The starting post is here.

This post is different - it's not a paragraph-by-paragraph synopsis of the primary text, it's a separate write-up of my own.

The first time I read the whole document, this chapter (the shortest in the book) lost me. It covers four distinctly different topics - it's almost odd that they're in one chapter. Lots of food for thought, but hard for me to digest. This time I dug in, and it's far deeper than its length suggests. Here's what I found:

Chapter 6. Learning from e-Patients

• The Internet has allowed ungoverned evolution, taking things in directions nobody anticipated. There's a lot to learn by observing what e-patients come up with when they can do anything they want.
  
  • Before the Internet, patients in need had no easy way to contact each other and satisfy their (sometimes desperate) hunger for information. The system simply was not producing what people needed and wanted. Some people died as a result, and many were unhappy or frustrated.
    
  • As previous chapters have detailed, evolution was inhibited by forces and practices in the then-current medical establishment that actively blocked lay access to information.
  • The Internet provides new access to information and a frictionless platform for new pathways to evolve – new ways for patients to serve each other and be served.
  • In this new world, things can evolve in any direction at all, without centralized planning. No authority anywhere can say No.
  • From an economist's point of view, a profound difference is that patients are now creating substantial value in the system with no project funding and no centralized planning. All it's required is to empower/enable people with the Internet and let them pursue what they want.
    
  
  
• Freedom brings consequences: Patients and doctors alike have discovered that it ain't necessarily easy: pursuing the new power leads to discovering the next obstacles and challenges. New responsibility and new frustrations arise.
  
  
• A new form of privacy becomes available, with new benefits: Seeking care online can provide a kind of privacy that lets people bypass their fear of stigma, so some patients are seeking (and finding) care they'd never sought. But new responsibilities arise, and providers are evolving new practices. We learn by observing what some e-patients are drawn to when nothing's stopping them.
  
  

All that is about liberation of patient desires and energy. Sometimes we think only about how patients have been inhibited, but a potentially bigger challenge to conventional thought is this:

Doctors have been frustrated too. People who think doctors are the obstacle haven't heard how hard it is to want change and be told no, by administrators and insurance clerks.

PCPCC talks about how expensive and ineffective our care policies are - expensive reimbursement for specialist treatments that don't actually improve outcomes, yet inexpensive practices are vetoed, even though they've been proven helpful.

What are we to do?

That's addressed by Learning what patients really want from clinicians. (Emphasis added.) It takes empowerment into a different dimension: not just treatment, but the whole relationship, and the ultimate empowerment question: Who gets to say how it's going to be?

Much of this book has been about what people do in a medical crisis - who takes action and what gets in the way. But for a moment forget about that, and just think how you'd like all medical care to work. If you could switch suppliers (as you can in many other businesses) and find any level of "customer service" and any mix of expertise-vs-self-service that you want, what would you like?

Two Harvard doctors spent two years asking patient/consumers, and this is what they found:

... insurance companies [refuse] to pay for a number of things [these patients considered] vital:

• Being available to patients by e-mail and cell phone on a 24/7 basis.
  
  
• Giving patients access to their medical records via the Internet. This is evolving rapidly, at last - but that doesn't mean doctors are paid for maintaining the data!
  
  
• Offering newly diagnosed patients crash courses on their disorders. This lack leaves you and me to go find the information among our peers.
  
  
• Training and supporting patients to practice self-managed care. See the "Steal These Slides" triangles again.
  
  
• Checking clinical practices against recommended medical guidelines. Can you believe this kind of research isn't reimbursible?
  
  
• Asking patients to critique their services and to suggest better ways to meet their needs.
  
  
• Involving patients in the governance of our clinic.
  
  
• Providing online support communities for patients.
  

Think about that list. It would be folly in any modern business to prevent expert staff from doing what people want. Yet for the most part in America today, medical staffers can't bill insurance for those things, so they must do it "off the clock" (payment-wise) - for free.

That's what's faced today by doctors who want to use their training, their motivation, their compassion and their experience to create a new world for us. Many of us have come to accept the consequences. One doctor writes:

"Even at a world-class medical center like Boston, it's gotten so bad that most of us take the defects for granted. Patients expect long delays in getting doctor's appointments. They expect to have to wait long hours in our waiting rooms. They expect rushed, time-pressured visits from overworked, distracted clinicians. They expect to be treated rudely by clinic staffers. They expect that it will be difficult or impossible to contact their clinician in a medical emergency.

"In the traditional clinical model, the doctor essentially works for the insurance company, not the patient."

(Re letting ourselves be treated badly: Not me, you bet your bippy! When that happens to me I speak up, same as if it were a restaurant with crummy service.)

So what are doctors doing? Some are starting practices where they refuse to take insurance, and can provide exactly whatever care they want - by charging a flat all-inclusive monthly fee.

Obviously this is only for the rich - there's controversy about it (Wikipedia). I don't have an opinion about it yet. But consider that the rich in this case (which does not include me yet!) are, in a sense, funding a form of research that's not happening anywhere else: "If you let patients have anything they ask for, what happens? Does anything new evolve?"

"The retainer-based model gives us a chance to say, 'Okay... We're really going to change things. We're going to find some exciting new ways for clinicians and patients to work together. We're going to work with our patients to develop new models of empowerment-based, patient-driven care. And if we succeed, the new practice patterns we create could provide a workable business model for widespread healthcare reform."

What's going on here? I'm not sure yet - But having worked on this post for three hours now, I'm starting to think the message is in that section title: What patients really want. We don't know yet - we're just barely starting to take off the restraints. Stay tuned, world.

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One more chapter left: "The Autonomous Patient." But reading that chapter again has really jolted my thinking, and I don't know what to say, yet.


p.s. Two footnotes:

1. PCPCC's research suggests that what we really want (and certainly what employers want, as insurance buyers) is a patient-centered medical "home." When I was a kid, this was called a family doctor. PCPCC data from around the world shows that where there's good primary care, both costs and outcomes are better.
   
   
2. A few weeks ago Paul Levy commented on the money issue:

The problem with the health care "marketplace" is that it is not a real market. There are so many intermediaries that the usual connection between buyer and seller that we see in other fields does not exist. Thus, the incentives for suppliers (doctors and hospitals) to engage in efficiency improvements and value enhancement are extremely slow to emerge.

"e-Patients," Chapter 5: e-Patients as Medical Researchers

Chapters 3 and 4 gave examples of the many ways e-patients are creating value for themselves and each other online, outside of (and augmenting) the conventional channels of treatment. I had personal experience with that, but Chapter 5 adds an eye-popping dimension: e-patients who have, in the absence of medical data, initiated their own research project.

I call this the "lethal lag time" chapter, because that was the #1 eye-popper for me personally - not because of the existence of the lag, but because it had never occurred to me that lay people could make a difference there. But that was before I got the concept of "empowered patients." And the lethal lag is only one issue. These stories blow me away.


Chapter 5: e-Patients as Medical Researchers

• Andy Martin, the e-patient who became a clinical researcher, studying his own cancer, and became the first person ever to successfully grow his type of cancer cells in a lab.
  
• From passive patients to active researchers: "Few if any researchers had considered the possibility that patients might be able to do real medical research-conducting experiments, collecting and analyzing data, and reporting significant and valid conclusions. Not until the Internet made it possible for large groups of patients with the same health concern to share their clinical experiences did the potential role of e-patients in medical research become apparent." (Did you know it was patients, not doctors, who discovered the sexual effects of Viagra?)
  
• The Life Raft Group: a research-oriented online support community: After his wife is misdiagnosed then correctly diagnosed with a cancer that had no known treatment (GIST), a researcher starts a private group of skilled professionals who are also personally involved with the disease.
• Bypassing the "Lethal Lag Time":
• After a medical breakthrough occurs, it takes years (often 2-3, up to 5) for the world to hear about it - even doctors. In my view this aspect of the established peer-reviewed publication process causes harm. It's truly a lethal lag.
• Patients can spread the word. I see this all the time on ACOR, as patients tell each other to inform their doctors about new developments.
• Note: there's nothing arrogant about doing that. Remember from Chapter 2: "Clinicians can no longer go it alone." If you want, review the full text of that section.
• More astounding is something that's not in this paper: the lag from concept to putting results in practice is 17 years. (I've heard that repeatedly; I'm looking for the source data.) Can't quite believe it? Read the steps a study has to go through.
  
• Parent-initiated research on reflux: Two mothers of children with gastroesophageal reflux disease (GERD) set out to determine whether the condition is genetically transmitted. Established researchers turned them down; they persisted, gathering more data and finding similar families. They succeeded: in 2000 JAMA published their results.
  
• Jannine and Liz Cody: Told in 1985 that nothing could be done for her newborn Liz's condition (chromosome 18 deletion which leaves patients hard of hearing and retarded), Jannine Cody studied and studied, and eventually figured out that human growth hormone might help. This led to research showing that HGH does help hearing and can bring an IQ increase of 47 points.
  
  Updates (not in the EP white paper):
• Liz, now 23, is attending San Antonio Community College
• A few weeks ago Jannine received this year's Founder's Service award from the Genetic Alliance.
• During the course of all this, Jannine decided to get a doctorate in genetics, and is now an associate professor at UT San Antonio.
  
• Portia Iversen Tackles Autism (1995)
• "At first [they] tried to persuade autism researchers to share their DNA samples with other scientists. But the researchers weren't about to turn their hard-earned results over to their competitors. 'They had their own agenda. And it didn't always lead to getting new treatments out to the people who needed them ASAP.'
• So, they started their own tissue bank, which is now the world's largest autism gene bank. Work using this gene bank is hailed by NIH Director Elias Zerhouni as "revealing clues that will likely influence the direction of autism research for years to come."
  
• Parent Expertise on PXE:
• Finding that their children have a rare genetic disorder, and medical science is doing nothing for it (I guess because of its rarity), parents start a tissue bank themselves and eventually find the gene that causes the condition, which "the establishment" hadn't achieved.
• They learned that in other cases where parents had helped researchers, the researchers sometimes patented the gene that the parents helped find, thus hampering other research. So these parents patented the gene themselves, to keep any doctors from doing so. Huzzah! Whose genes are they, anyway??
  
• e-Patients' role in future medical research

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Key take-aways, for me (not listed in the paper):

• The medical establishment, for all its wonderful achievements (including saving me), is nowhere near as almighty as I once thought
  
• The careful, methodical process that we use to accumulate medical knowledge carries what can be enormous costs and penalties:
• It takes a long time for information to be developed and propagated
• That makes the process very costly, which marginalizes less "popular" conditions.
• Consider Randy Pausch's testimony before Congress (see his 8 minute YouTube) about how his cancer, pancreatic, could be figured out if we had the will: he said “Let’s face it,” explaining his determination to make the trip and testify. “The only way you get funding is to rattle a lot of cages.”
  
• Because of the Internet, e-patients now have the ability to connect with people around the world and become their own aggregators of information - and keep it out of the hands of professionals who would prefer to make it their own, to the detriment of the patients they're sworn to serve.

This is really starting to sound like patient empowerment, isn't it? You might want to review the two graphics at Steal These Slides again - and bear in mind that DocTom published those slides in 1995, when the Web was just a year old. Visionary.

Next: Chapter 6, Learning from e-Patients.

"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-Patients," Chapter 3: Patient-Centered Networks: Connected Communities of Care

Chapter 2 ended with two pivotal observations: "Clinicians can no longer go it alone," and "The most effective way to improve healthcare is to make it more collaborative... In the chapters that follow, we offer more suggestions on how we might accomplish this." Chapter 3 begins this inquiry by exploring the trend that made the most difference to me, personally. The chapter starts by exploring the different purposes that have evolved for patient-centered communities.


3. Patient-Centered Networks: Connected Communities of Care

It's astounding how widespread e-patient behavior is, considering that hardly anyone I talk to even knows it's happening.

• Internet surrogates (peer caregivers (especially women) researching for another)
• "In the beginning, like most health professionals and researchers, my Pew colleagues and I assumed that patients would do their searching for themselves. So we were surprised to discover that more e-patients (81%) had gone online because a friend or family member had been diagnosed with a new illness than had searched the Net following a new diagnosis of their own (58%)."
• Pew research in 2006 found 93 million Americans seeking health information for themselves, another 42 million seeking information for their parents, and more.
  

• Helping patients & families deal with a new diagnosis: when people hear of a friend's crisis, they reach out with advice and useful information.
  
  
• Patient-centered support networks - a very different entity than the better-known disease-specific communities.
• I'm not in the book, but my CaringBridge friends are a perfect example. They'd get email notifications of each new post I made, and sometimes they'd forward the emails to others. In Web 2.0 terms, my support "went viral," and I got advice and support from people I'd never met or hadn't seen in decades.
  
  
• Web sites that support patient-centered online health networks: The public is now more aware of CarePages and CaringBridge, even moreso since this June's Associated Press story. But it was a very new topic in 2006.
  
  
• Why personal online health networks have received so little attention: Most people have considered the discussions very private. Not me, baby: put me out there. :)
  
  
• Providing continuing support for the incurable: "Professional medicine is often at its worst in providing continuing comfort and care for patients facing serious illnesses that are beyond the hope of cure. In such cases, the support and care patient-centered networks of family and friends provide can be a lifeline."
  
  
• What we can learn from patient-centered networks:
  
  
• "Patient networks are emerging as a new medical domain within which a wide variety of individuals and groups become valuable healthcare resources. Nearly all of those involved with patient-centered networks provide their services for free, and since patient-centered networks operate independently of the formal healthcare system, they are not constrained by that system's built-in limitations, inefficiencies, and defects." (emphasis added)
  
  
• "The importance of this form of communication should not be overlooked, since individual telephone calls and emails to a person's entire network of concerned individuals puts a huge burden on the patient or the caregiver."

The following is my observation, not taken from the published paper:

Look at how this dynamic is already disrupting where value arises in healthcare. (See the italics I added above.) 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,

...the convergence of forces can make for an explosive shift in everyone else's value proposition, everywhere else in the ecosystem. The White Paper doesn't say so, but having been through the gauntlet myself, and being a student of business change, the signs are clear enough for me.


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Next: The surprisingly complex world of e-communities. (That illustrates what I just said: 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.)

"e-Patients," Chapter 2: Content, Connectivity, and Communityware

Continuing the series started in the previous post...

Chapter 2: Content, Connectivity, and Communityware – seven preliminary conclusions (full text wiki)

This chapter was my personal favorite, because it exploded so many myths and provided so much evidence that the change is already well underway.

Remember, I didn't read this until late January 2008, six months after my treatment had ended. When I read it, my immediate question to the e-patient working group was, "How the (#@$! could I have gone through last year without ever hearing about this?? We need to get the word out!" So here we are.

From the introduction:

"John Seely Brown... notes that when established experts first consider the effects of new information technologies and the cultural transformations they produce, they typically do so from within the cultural constraints of their established professional paradigm ... We were no exception. Our findings were so unexpected that we were forced to consider alternative points of view... But as Brown discovered, 'Really substantive innovations – the phone, the copier, the car, the PC, the Internet – drastically alter social practices.'"

The authors – mostly doctors, remember – said "Our most helpful insights came from a growing awareness that e-patients use the Internet in three fundamentally different ways: to access content, connect with others, and collaborate with others in ways never possible before."

See what I mean about how this had strong echos for me? They continue:

... many who have attempted to study or explain e-patients and many leaders in medical reform have overlooked, ignored, downplayed or even actively opposed some of the most innovative developments in modern medicine.

Presenting their findings, they said "We modestly suggest that the tentative conclusions below are no more 'anti-doctor' or 'anti-medicine' than the conclusions of Copernicus and Galileo were 'anti-astronomer.'" The preliminary conclusions:

1. e-patients have become valuable contributors, and providers should recognize them as such.
   
• "When clinicians acknowledge and support their patients' role in self-management ... they exhibit fewer symptoms, demonstrate better outcomes, and require less professional care."


2. The art of empowering patients is trickier than we thought.
• "We now know that empowering patients requires a change in their level of engagement, and in the absence of such changes, clinician-provided [information] has few, if any, positive effects."
  
  
3. We have underestimated patients' ability to provide useful online resources.
   • Fabulous story of the "best of the best" web sites for mental health, as determined by a doctor in that field, without knowing who runs them. Of the sixteen sites, it turned out that 10 were produced by patients, 5 by professionals, and 1 by a bunch of artists and researchers at Xerox PARC!
     
     
4. We have overestimated the hazards of imperfect online health information.
• This one's an eye-opener: in four years of looking for "death by googling," even with a fifty-euro bounty for each reported death(!), researchers found only one possible case.
  
• "[But] the Institute of Medicine estimates the number of hospital deaths due to medical errors at 44,000 to 98,000 annually" ... [and other researchers suggest more than twice as many]
• "We can only conclude, tentatively, that adopting the traditional passive patient role ... may be considerably more dangerous than attempting to learn about one's medical condition on the Internet." (emphasis added)
  
  
5. Whenever possible, healthcare should take place on the patient's turf. (Don't create a new platform they have to visit - take yourself wherever they're already meeting online.)
   
   
6. Clinicians can no longer go it alone.
• Another eye-popper: "Over the past century, medical information has increased exponentially ... but the capacity of the human brain has not. As Donald Lindberge, director of the National Library of Medicine, explains 'If I read and memorized two medical journal articles every night, by the end of a year I'd be 400 years behind."
• In contrast, when you or I have a desperate medical condition, we have all the time in the world to go deep and do every bit of research we can get our hands on. Think about that. What you expect of your doctor may shift - same for your interest in "participatory medicine."
  
  
7. The most effective way to improve healthcare is to make it more collaborative.
• "We cannot simply replace the old physician-centered model with a new patient-centered model... We must develop a new collaborative model that draws on the strengths of both systems. In the chapters that follow, we offer more suggestions on how we might accomplish this."
  

Next: Patient-Centered Networks: Connected Communities of Care

e-Patients: How they can help us heal healthcare, chapter 1

Regular readers know I often speak of "e-Patients: how they can help us heal healthcare," aka "the e-Patient White Paper." I urge people to read it, but at 126 pages, it takes a commitment.

So I'm going to serialize it into seven chapter summaries, in the form of seven blog posts. Here's the first.

e-Patients: How they can help us heal healthcare

Published in 2007 by the e-Patient Scholars Working Group,
completing the life work of Dr. Tom Ferguson

"[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 <==wow

Chapter 1: Hunters and Gatherers of Medical Information

This chapter lays the foundation for the body of the book, opening with two compelling stories of what we might today call "e-patient pioneers" - those individuals who, with no precedent, took matters into their own hands, embodying the e-patient idea that they (and you and I) have every right to know everything they can about their health - and sometimes they might even do a better job than the doctors.

Sections:

• Edward Murphy's incredible story of trying to get information about his condition - he had to impersonate his doctor (1994)
  
  
• "An unusual sloshing sound inside her head": Marian Sandmaier diagnoses her daughter's severe headaches, when two specialists had failed to (1999)
  
  
• Turning to Dr. Google: research from the Pew Center for the Internet & American Life, documenting that patient googling is now dominant: the great majority of Internet users look for medical information. (That seems obvious today, but it was radical and almost verboten when Tom Ferguson started his work.)
  
  
• Three types of e-patients - the well, the newly diagnosed, and the chronically ill - and more Pew research on the different ways they use the Internet
  
  
• "The Accepting, the Informed, the Involved, and the In Control": an intriguing way of viewing different people's Internet use based on their attitudes and how deeply in trouble they are.
  

In that last section, check out Group IV: "...believe in making their own medical choices... will often insist on managing their own medical tests and treatments as they think best... may attempt to help to keep their clinicians up to date on new treatments and studies.... may start, manage, or contribute to local support groups, online communities, blogs... " My my, which group am I in? :)

Next: Content, Connectivity, and Communityware - seven preliminary conclusions