A Call for a Patients Speakers Bureau

We need to create a speakers bureau that lists informed patients who are available to participate in conferences and other speaking engagements. I think this idea was first suggested to me by the wonderful Ted Eytan MD. We need infrastructure (a place to host the list) and funding for the speakers.

Everyone's talking about creating a new world of healthcare that's more patient-centered or patient-oriented. Actually, in its fullest realization, this will be participatory medicine. (See the many posts on the e-patient blog.)

But how can we do that if patients aren't at the table as this new world is thought out?

There are three separate issues.

• First, conference organizers need to realize that patients should be involved.
• Second, they have to know where to find them. That's where a bureau would come in. (Conference organizers commonly find speakers by turning to a speakers bureau in their field. Google "speakers bureau" and you'll see how widespread they are.)
• Third, patient participation needs to be funded. All other conference participants do it as part of their day job; patients can't.
  

This isn't just about me, but I'll use my own example to show how this plays out. I would attend far more conferences than I do, but I have to take time off work and pay travel expenses:

• I was on a panel at the Mass Tech Leaders healthcare cluster in June, with the CIOs of local hospitals and vendor reps, with investors and analysts in the audience. I had to take time off work.(My parking was validated.)
  
  
• That went well enough that I was subsequently invited to be on the Advisory Board for that group. I attended several meetings, and became co-chair of an upcoming event in April. But I had to stop attending meetings because they're workday meetings.
  
  
• When I spoke at Connected Health 2008 in October (slides and video), I had to take time off work. It was local for me (Boston), so I only had parking costs ($30). I would have loved to attend both days, talk to people, learn and teach, but I didn't want to use two vacation days.
  
  
• Kudos, though, to InvestNI, the Northern Ireland investment group. Northern Ireland is the first country where Europe is rolling out the EU's connected health initiative. They invited me to speak at their dinner that Monday night, and generously gave me a hotel room so I didn't have to drive home to New Hampshire overnight, then back in through morning rush hour.
  
  
• I'm speaking (with my doctor) at TEPR+ in Palm Springs on February 1. The conference is paying most of my travel costs, but it's costing me vacation days.
  

Can you see how difficult it'll be to create the new world if patients aren't at the conference table, aren't in the meeting room, aren't at the industry conferences where that future is planned? How do we start?

Science Blog: Clinical trials: Unfavorable results often go unpublished

I have a continuing interest in patients understanding the statistics that are used to recommend treatments to doctors - and thus to us. So I was intrigued by this post Wednesday at Science Blog:

Clinical trials: Unfavorable results often go unpublished

Trials showing a positive treatment effect, or those with important or striking findings, were much more likely to be published in scientific journals than those with negative findings, a new review from The Cochrane Library has found.

"This publication bias has important implications for healthcare. Unless both positive and negative findings from clinical trials are made available, it is impossible to make a fair assessment of a drug's safety and efficacy," says lead researcher, Sally Hopewell of the UK Cochrane Centre in Oxford, UK.

The international team of researchers carried out a systematic review of all the existing research in this area. In addition to showing that negative results were published less often, they found that if these results were eventually published, they would take between one and four more years to appear in journals than studies showing positive results. ...

As often happens, there's more to learn from the comments than in the original post:

"No one will publish a paper about an experiment that gave negative results. The problem is that negative results could as important as positive ones (so maybe other researcher won't try the same thing again, for example). I hope the publication industry will soon disappear, and that the strengths and paradigm of the Internet will finally be used also for scientific articles."

"The worst part of this very understandable human trait to publish only successes is this: How can we learn from failures if we never hear about them?"

"I think you could argue that publication bias negatively affects the entirety of scientific research, not just clinical trials. As someone who works in the business, I wanted to mention the PHARMA Code, the code of ethics for the industry. Regarding publication it's pretty clear: you must ATTEMPT to publish findings, significant or not. Now, whether a journal editor wants to publish non-significant results is another story entirely."

"I think it is unfair to blame the journal editors. ... The researchers (in any grant-dependent field) may be required by a grantor or a code of ethics to attempt publication, but my guess is that they don't work very hard to produce a high quality manuscript when all they have to discuss are unsuccessful trials or nul results."

My takeaway: it's even sketchier than I thought to presume "If it was important information, we'd have read about it." The process of preparing and publishing articles is fraught with potholes and pitfalls.

I'm not saying we should ditch journals. We should, though, be conscious of what they are and aren't. Certainly not an inherently authoritative source of information – despite the best efforts of their editors.

p.s. Where did I learn of that post? In an online patient-to-patient community – patients empowering and informing each other. Gotta love the Internet and e-patients!

Evidence-based medicine, part 2: No evidence that parachutes help.

A while ago I wrote about evidence-based medicine, the discipline of relying on evidence when making treatment decisions. I wrote about its strengths, but also the risk of relying exclusively on evidence. Bottom line, as Mom always said, is "Use your HEAD, Rosebud." (Yes, she called me Rosebud at times like that.) For details see my earlier post.

I'm at conference in Boston right now, and I just saw a great spoof of this topic. In 2003, the highly respected BMJ (British Medical Journal) ran this article:

Parachute use to prevent death and major trauma related to gravitational challenge: systematic review of randomised controlled trials

If you understand medical research you're already laughing. Others, consider this:

Objectives To determine whether parachutes are effective in preventing major trauma related to gravitational challenge.

Design Systematic review of randomised controlled trials.

The punch line is that in a controlled trial, some people receive the treatment (a parachute) and some don't. In this case, they'd all then jump out of a plane. NOT bloody likely that you'd get many people to participate in that one. But, if we're being rigorous, no excuses! The "investigators" have no choice but to conclude that "the effectiveness of parachutes has not been subjected to rigorous evaluation by using randomised controlled trials."

These are exactly the words used by the staunchest advocates of evidence-based medicine to put down treatments that have no such trials.

My conclusion: pay attention to your mother. Or mine. Think.

p.s. The investigators end with a recommendation that "the most radical protagonists of evidence based medicine" ... participate in a trial of whether parachutes work.

Why I love participating in blogs (and in healthcare)

We hear people talking about "social media" – Facebook, blogs, Twitter and all that – and I often hear folks wonder, "Is this making any difference or is it just another way for idiots to waste time?"

Well, in healthcare it's sure making a difference. For one (big) thing, it brings together people who very likely would never have connected. Like, I mentioned Albert Schweitzer, and I just got a reply from the president of the Albert Schweitzer Foundation.

That's amazing, and so is the context in which it happened: patients being welcome in discussion of changing healthcare. This post shares what happened, and my perspective as an observer of these social media changes.

---

12/21/08: Paul Levy writes What if?, inviting other Boston hospitals to share ideas and information to try and eliminate common causes of hospital-acquired infections. In one comment, I wrote:

I sure love the idea of cooperating across hospital lines. And I can't imagine anyone with the spirit of an Albert Schweitzer who'd say no. (And yeah, that's the spirit I want in my medical community.)

1/15/09: Paul writes What does it take?, noting that not a single hospital replied to his invitation, not even to say "Nice idea, but you overlooked x, y and z." He cites that day's big news story that pre- and post-surgical checklists reduce errors. He comments that people from all other walks of life think checklists are an obvious way to be sure you didn't forget something, but many people in healthcare prefer to "go commando" (my term - no checklists), like "we don't need no steenkin checklists" (also my words, not Paul's).

A vigorous discussion has ensued - 38 comments so far - some doctors saying change is hard, another observer says changing culture is hard, a few patients piping up. I wrote an irked comment and posted here and on the e-patient blog, and got some constructive criticism. I commented again, repeating my Schweitzer thought. And here's what I got in response:

To what e-patient Dave said:

Albert Schweitzer taught: "Example is not the main thing in influencing others, it is the ONLY thing." Atul's report on Seattle confirms this once again. It's seeming clear that what Paul is saying on his blog has limited influence on other academic centers, at least in Boston. But if/when we at BIDMC have a demonstrably safer hospital than we do now, and medical, nursing, and other staff who are thus even more proud than of working here than they are now (and thus attract others), and if/when we are then attracting patients who trust us even more than they do now, THEN there would be no one in health care who wouldn't listen (or at least look!).

The different views expressed here are unlikely to be resolved through discussion. Schweitzer said "My LIFE is my argument". What Atul reports from Seattle and Jordan is a pretty powerful argument indeed. ...

Lachlan Forrow, MD
President, The Albert Schweitzer Fellowship
Director, Ethics Programs, BIDMC

My mind got blown as I wrote my reply (the links are worth chasing if change interests you):

Lachlan, thank you so much for your kind, informative and illuminating response.

I'm always humbled and grateful when a doctor takes time to teach me something. Sometimes I speak strongly because of my passion for a new world of healthcare, where patients and professionals collaborate in sharing responsibility and creating solutions. (See October discussion of the forthcoming Society of Participatory Medicine, and the recent discussion Embrace Knowledge Symmetry, as BIDMC's Danny Sands put it).

But I'm keenly aware that in absolute terms I don't know squat compared to the vast elephant-sized picture. So I'm always a little afraid to assert a position, and I'm always grateful when someone teaches me.

It's wonderful that social media and increasing transparency are letting lay voices in on the conversation. In developing the idea of participatory medicine, the e-patient scholars group has largely talked about patients participating in their care. But it's evolved beyond that: on his own blog, Ted Eytan MD led a discussion that defined Health 2.0 as "...participatory healthcare. Enabled by information, software, and community that we collect or create, we the patients can be effective partners in our own healthcare, and we the people can participate in reshaping the health system itself."

I participate with all humility, I hope, and I'm grateful for the chance.

And, just to be complete, I popped out of humility mode and ended by returning to the point:

--So, like, what is UP with hospitals (and perhaps their boards?) not "participating" in sharing information and ideas as the post suggests?? My guess is that whatever is stopping us, it's causing as much harm as a disease.

The comments are where bloggage gets really productive, people. Without comments, blogs are one-way. You should comment more, here and everywhere. You do get to speak up now.

An e-patient call to arms

Cross-posted from the e-patient blog

E-patients, this is a call to action. Now. I want you to go express yourself on Paul Levy's blog.

Most readers of health policy blogs know what a costly, inefficient mess healthcare in America has become. Paul Levy would like the people in his business to work together to fix that. Wouldn't that be nice?

Last month he proposed that all the hospitals in the area band together to share information about how to solve problems like hospital-acquired infections. (He's already been posting his own hospital's failure rates on their web site, for people to monitor as they work to improve it.) And on 12/21 he proposed that hospitals not only share data, but work together to figure out how to prevent problems, so you and I don't have as much chance of being harmed during our stay in all their hospitals:

What if all of the hospitals in the Boston metropolitan area -- academic medical centers and community hospitals -- decided as a group to eliminate certain kinds of hospital-acquired infections and other kinds of preventable harm?

And what response has he gotten? NOTHING. From his post today:

Look at the non-response to my challenge to all the Massachusetts hospitals on this matter a few weeks ago. I don't think I am being egotistical to expect at least one hospital administrator or someone from the state hospital association to contact me and say, "Yes, let's try it." Or even have one of them say, "That's a dumb idea." No, the response is silence.

The subject today was the big national news story about how using checklists reduces medical harm. (He has links to it.)

To ordinary citizens it's obvious that checklists make sense, but many doctors are acting like it's some weird controversial idea, or maybe just some fad.

The thing that really irks me is that in the comments, it seems like almost the whole medical establishment is saying "But I don't WANNNA do it different. It's too HAARRRD." Here we have clear evidence that checklists reduce harm, but these intelligent people seem to be whining "But they were mean to us when we were in med school. We LEARNED to hide our mistakes. It's not our fault" or "It's too HARD to change culture."

Well, it's not. Charlie Kenney of Cincinnati Children's (another exemplary hospital) commented about how they've made the change, and he names names of his people who were brave enough to put patients first. (Ya think??)

There is not enough patient voice on that discussion. One other blogger patient besides me, the famous Pregnant Stephanie, said "Bring on the check lists!" And that's where you come in.

Go torch that thread. Set the place on fire, burn it down. Go say what YOU think about whether hospitals should adopt checklists. Tell the doctors and administrators to listen. And ask 'em what the blazes they're talking about when THEY don't put patients first.

Click here to read the post and its comments, and add your voice. And yes, let's get radical: DEMAND that they put patients first. Click here. Really.

Robert Wood Johnson Foundation report on malpractice issues

Recently I wrote a post about malpractice issues. I didn't know much about the subject, and got some useful corrections from helpful commenters. I know this is how the whole Web 2.0 "social media" thing is supposed to work, but it's wonderful and humbling (and FUN!) when it happens.

One visitor is Claudia Williams, director of Health Policy and Public Affairs at the Markle Foundation. She said

Clearly the malpractice system needs to be fixed (it's inefficient, confrontational, and does nothing to improve quality) but not because of the hyped cost figures cited by some.

and steered us to some 2006 work she commissioned at the Robert Wood Johnson Foundation (RWJF) which seems to be a good education about the whole malpractice subject. An excerpt from that web page (emphasis added):

"Improving insurer financial ratios suggest that the malpractice crisis is now abating in some states, [yet] malpractice crises are a recurring problem. Over the last 30 years there have been three periods of rapidly rising premiums, each sparking policy-maker concerns about affordability and accessibility of coverage and the effectiveness of policy solutions. States have enacted a variety of reforms to prevent or temper malpractice crises, but there is a paucity of reliable information available to policy-makers about the effects of these reforms and the impact of the malpractice crisis on health care delivery.

Some Key Questions Addressed in This Issue:

* How does a volatile malpractice environment affect health care delivery?
* What has been the impact of state tort reforms on premiums, claims frequency, claims payouts and physician supply?"

That page links to some documents. I particularly like the medical malpractice primer. (It's now three years old, and I sure would like to see it updated.)

A key item (page 6) is that the author found no reliable estimate of the national cost of "defensive medicine," which is (for instance) the CT scans that commenter "doc3osh" cited in the earlier post. (Doctors prescribe many CT scans, to defensively avoid being sued for not doing so.) (The paper doesn't assert that those costs don't exist; it says there's no good calculation of their cost.)

Some of the report's findings (page 9):

• The system does a poor job compensating patients injured by medical malpractice.
  
  
• The system has high transaction costs. For every dollar paid in malpractice insurance premiums, only about 40 cents goes to injured patients.
  
  
• Awards in malpractice cases are inequitable. Many plaintiffs with meritorious claims receive nothing, while others receive awards that seem disproportionate to the severity of their injury. Moreover, plaintiffs with similar injuries receive quite different awards, even in the same jurisdiction.
  
  
• The system focuses on the misdeeds of individual healthcare providers, but medical errors are often due to breakdowns in whole systems of care.
  
  
• It is difficult to hold a hospital or other healthcare system liable for a medical error so malpractice awards are usually levied against individual physicians.
  
  
• There is no real evidence that the medical liability system deters negligent care.
  
  
• The system has perverse effects on patient safety initiatives.

Also: "Rising claims costs – driven by an increase in average payouts not claims frequency – have contributed to rising premiums, but do not explain the sudden spike in premiums around 1999–2000." (Those costs largely did account for the crises of 20 and 30 years ago, but they're a small part of the surge that happened 10 years ago.)

The 4-page policy brief seems like a terrific introduction to the whole subject, too.

I gotta say, this process of learning about the healthcare morass is a bit scary. The more I learn, the more I see it's a complex mess, and the more I might fear looking like a fool if I dare to open my mouth about something.

But what the heck, folks. The complexity is a result of too little visibility into what's actually going on, and we might as well dare to speak up. On his blog, Paul Levy likes to quote the old line about "Sunlight is the best disinfectant." Huzzah.

Thanks to everyone who contributes to our learning process, here and elsewhere.

Physicians as coaches, part 2: "Embrace knowledge symmetry."

Cross-posted from the e-patient blog

I don't get surprised these days as easily as I used to before I got "e." But something popped my eyes open last weekend, and I dug into it. It goes to the heart of where the power is, in the doctor-patient relationship. But not just the power – the responsibility for getting it right. Yikes.

A new book, Patient, Heal Thyself, is reviewed in the 12/26/08 New England Journal of Medicine (review here; subscription required). I’m a bit stunned by author Robert Veatch’s apparent position on “patient autonomy,” but I soon learned that his utopian-sounding views may be closer to reality than I imagined.

Still, it seems a bit much. Reviewer Mark Hall, J.D., of Wake Forest, says:

Veatch’s proposals are so startling that readers of this review may doubt my characterizations, so I will quote liberally, starting with its excellent title — Patient, Heal Thyself. This injunction captures Veatch’s two main points: Patients alone are in charge, and they have no choice but to assume this active role. According to this “manifesto,” doctors “will no longer be seen as capable of determining what will benefit their patients. It is patients themselves who, in the world of the new medicine, have to take charge.”

As someone whose butt was saved by excellent medical care, I find it unimaginable to consider doctors “incapable of determining what will benefit” me. What, like I was going to think up high-dosage Interleukin-2 on my own?

But whether we accept every word in the book (which I haven’t yet read), let’s step back and look at those two main points.

Patients alone are in charge: Working group colleague Charlie Smith MD wrote about the review, too. He reminds me that patients are indeed in charge of what gets done; a major concern doctors discuss all the time is compliance: whether we slacker patients will actually take the recommended medication (I do), heed dietary recommendations (oops), get checkups at recommended intervals (mezza-mezz), etc.

And I realized, it goes beyond that: a friend of my family developed kidney cancer a year after I did, and elected not to get treatment where I did – he stayed with his local hospital (also in the Boston area), and is dead now. Who was in charge? Clearly he was. And that leads to the second assertion:

[Patients] have no choice but to assume this active role. A vital question is whether the patient realizes this – or, more to the point, realizes the implications. Did our friend fully comprehend the implications of his choice? Was he “e”? Was he empowered or hopeless? Talking to him, I was never sure, but it didn’t feel like an active role.

But then I thought back to “Doc Tom” Ferguson’s visionary slides, dating back to 1995, predicting that patient access to medical knowledge would turn healthcare on its head. (Click to enlarge.)

The vast majority of tough thinking and wonk work on blogs like THCB, and at conferences, is about the ugly tangled mess American healthcare has become. I'm not belittling that work – it needs to be un-messed – but while that work continues (and regardless of its progress), the real juice for each patient now, today is in how well we take responsibility for our care, by informing ourselves and making choices.

Charlie nailed it in the close to his post: "What lessons does Mr. Veatch's book leave with us? ...It is a good wake up call for physicians. We need to embrace the 'ePatient Revolution', recognize that the patient MUST be the one who is in control of their own health care, assist them in achieving this, and not be tempted to allow that to interfere with our professional self esteem because, in my view, it in no way threatens it!"

That echos last week's post "Physicians are coaches, patients are players."

Or, as my primary physician Danny Sands put it when he and I spoke at Connected Health in October:

• Embrace knowledge symmetry.

That's the core of it. See our banner graphic – "health professionals can't do it alone." We the patients do need to accept that not only do we have the right to guide our care, doctors need our help – and we need their guidance.

HelloHealth: putting you back in direct touch with your doctor

Well, I just got my mind blown. I'd heard of this little company – this doctor with a completely radical idea – but until tonight I had no idea how completely upside down inside out different his approach is. Radically trashing the current way of doing business in today's doctor-patient relationship, kicking its ugly butt right down the fire escape and replacing it with what he wanted in the first place: a really good personal relationship.

Mind you: I haven't thought this through at all, to see how it plays out. Like, I don't know how his model would work when someone like me comes down with stage IV kidney cancer. But put that on hold for 20 minutes and listen to what he's talking about.

And thanks to the always richly informative Susannah Fox of the e-Patient Scholars Working Group, who highlighted this guy in her post today on that blog, Doing Our Best to Blow Your Minds. Ya think?

Wingsuit BASE jumping

This has nothing to do with healthcare. But not many things make my jaw drop, and this did.

These people are crazy. Click the little white four-arrow symbol at bottom right to make it full screen, then play.


wingsuit base jumping from Ali on Vimeo.

Thanks to Uncle Sandy, the former airline pilot. He's crazy himself, but at least he believes in flying in a machine.

"Health reporters should have higher standards" (Sci.Am.)

Scientific American has a good new post, Health reporters should have 'higher standards,' commentary says. It's about a piece in today's New England Journal of Medicine on the "Pitfalls of Health Care Journalism" by NPR's Susan Dentzer.

Well folks, you heard it here first. :)

11/15/08: Making Sense of Health Statistics

11/17/08: Part 2

12/1/08: HealthNewsReview.org: a great learning resource

Just between us, I can't tell you how pleased I am that having just started this exploration in February, I've gotten to the point where I'm noticing (and writing about) issues when (or even before) the big cats do.

“Physicians are coaches. Patients are players.”

Cross-posted from the e-patient blog:

I don't know who Stanley Feld is, but he just became my friend, with a terrific post on doctor as coach, patient as player. It starts:

The role of patients with chronic diseases and their physicians must be clear to both patients and physicians. Physicians are coaches. Patients are players.

This resonates with what's become my favorite item from Chapter 2 of our white paper, e-Patients: How they can help us heal health care: Preliminary Conclusion #6, which is "The best way to improve healthcare is to make it more collaborative."

It resonates particularly well with me because my own e-patient community, the kidney cancer group on ACOR.org, taught me that increasingly cancer has become not an immediate threat to life but a chronic condition. Then, when I read Anticancer: A new way of life, an astounding idea came to my attention: cancer without disease.

Cancer without disease!

Astounding, and I've never heard it mentioned elsewhere; but here I am, a living example. I still have metastases in me, but I don't have a trace of illness.

And, thank you very much, I'd like to keep it that way.

Funny thing is, though, in my case, I'm getting more advice on how to do that (chronic management, keeping it that way) from my reading than I am from my physicians! (Especially from reading Anticancer.) I'll be talking to them about that.