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."

---

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.

Cross-posted: "Born To Be . . ."

From Paul Levy's blog:

Born to be . . .

Following up on the theme introduced last Friday, here is a pertinent animated view of the Baby Boomers.

All I could say in my comment was "o... m... g..."

To heck with cancer; I don't like having a cold.

MAN do I get annoyed having a cold.

Especially with a cough. Trying to hold back a cough, I get an abdominal cramp that won't go away.

My nose hurts. It's hard to breathe, and I make a lot of noise.

Candidly, cancer was less uncomfortable.


(Well, except for the surgery.)

(And the throwing up, and the diarrhea and constipation and the leg that hurt like hell, and then the broken leg, and the pain whenever I coughed after surgery, and....)

Oh, never mind.

At least when I had cancer I had a better attitude. :)

"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.

----------

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.