Here's the next post I made on this subject on my ACOR list. (First post was here.)
It's hard for me to believe that this would be as important as it seems (the Nobel Prize in 1931???) yet shortly after diagnosis my hospital gave me a diet encouraging me to increase my caloric intake, including a lot of the forbidden items below.
Yet, the author of Anticancer said his oncologists told him the same thing: "Doesn't matter what you eat, just keep your weight up."
Many of the specific recommendations at bottom will be familiar, but what was completely new to me was that this stuff encourages tumor growth! And nobody told me. Just as the author (an MD) described at his hospital, none of the nutrition advice I received talked about this at all.
Continuing on the foods theme, from Anticancer: sugars, and certain grain foods that produce sugar.
==== Principles ====
Otto Warburg won the Nobel Prize (in 1931!) for his discovery that the metabolism of malignant tumors is largely dependent on glucose consumption.
When we eat sugar or white flour:
- glucose rises rapidly
- insulin is secreted so the glucose can enter cells
- insulin is accompanied by IGF, which promotes cell growth
Both insulin and IGF promote inflammation, which as I said the other day favors tumor development. Also, cancer journals in 1999 and 1998 reported that insulin spikes and IGF promote cancer growth AND enhance tumors' ability to invade neighboring tissues. Not what I want in MY innards!
The good news: your chemical "soil" changes rapidly in response to a reduction in refined sugar and white flour: levels of insulin and IGF drop quickly. (Specifically, it doesn't take months of diet change to get results: you can quickly alter the "soil" in which your tumors will or won't be growing.)
==== Bottom line ====
Foods we can use liberally:
Mixed whole-grain cereals (Yum!)*
Oatmeal, All-Bran, Special K
Multigrain bread (not just wheat, even whole wheat)
Rice: whole grain, basmati, Thai (NOT white)
Pasta (preferably multigrain) cooked al dente
Oats and other grains (not corn)
Legumes: peas, beans, yams, etc.
Fruits in their natural state, especially blueberries, cherries, raspberries.**
Drinks: flavored water; green tea; red wine with meal
Garlic, onion, & shallots lower insulin peaks when mixed with foods
* We love Nature's Path FlaxPlus granola - delicious and crunchy; doesn't taste like cardboard as some organics do.
** We LOVE Rader Farms' "Nature's Three Berries" mix , which comes in a big frozen 4# bag for just $10 at Costco. Don't know if it's available elsewhere. Delicious; we put it on cereal or desserts.
Troublemaker foods to avoid:
Sugar (all colors, incl honey & all syrups)
White grains / bleached flour: white bread, white rice, overcooked pasta, muffins, etc
Potatoes, especially mashed. Potatoes turn quickly into sugar.
Cornflakes and most other bleached or sugared cereals. Even unsugared, they digest directly into sugar.
Fruit in syrup; jams, jellies
Do NOT drink: sugared drinks; alcohol except during meals
More details are in the book - this is just the basic idea, with some specifics.
Wednesday, December 31, 2008
Here's the next post I made on this subject on my ACOR list. (First post was here.)
Tuesday, December 30, 2008
As promised Sunday, here's the first of several posts I made to my kidney cancer group on ACOR.
NED = No Evidence of Disease. We don't say "cured" because invisible microtumors can still exist. All we can say is "no evidence of disease."
Complete Responder: a patient whose disease has "completely responded" to treatment, i.e. disappeared, i.e. NED.
VHL = Von Hippel Lindau syndrome - a particular form of kidney cancer (not mine).
Mets = metastases (distant tumors, as opposed to the primary tumor where the cancer started).
From: The Kidney Cancer Online Support Group [mailto:KIDNEY-ONC@LISTSERV.ACOR.ORG] On Behalf Of Dave deBronkart
Sent: Sunday, December 28, 2008 7:23 PM
Subject: [KIDNEY-ONC] Anticancer Foods (was: New Member - Stage IV)
I'm going to write some things here about foods. I'm not representing them as sure cures or treatments or anything of the sort. But, I've been doing some research and I've checked with some people I trust and I think this is worth sharing.
Here's the thing: I'm an IL-2 responder whose mets have shrunk another 75% since my treatment ended 7/23/07, but my oncology team is out of advice for me.
They say my odds of relapse are now down to 50%, but they have no advice on how to improve my odds. But like most people here, I'm not one to sit back and just hope!
My wife bought us a book Anticancer: A new way of life by an MD/PhD who had a brain tumor, got rid of it, and had it recur, all before he was 40. Third time around he decided to look for additional advice, beyond what his doctors had said ("Eat what you like. Just don't lose weight.")
(I first wrote about the book in November: Chocolate Therapy, and I just found a good layman's article about it in a British paper here.)
He found there's a lot of research worth paying attention to regarding how tumors grow and what foods help or hinder them grow.
1. One way cancer works is to hijack our normal inflammatory response. For one thing, an everyday injury triggers tissue repair, which includes growth of new blood vessels (angiogenesis). We can fight tumors by any intervention that discourages inflammation or angiogenesis. Some foods do that.
2. Angiogenesis plays a key role when microtumors get promoted into nastier things. (The book's cover says "All of us have cancer
cells in our bodies. But not all of us will develop cancer.") It's good to interfere in that process.
Note: that text explained to me why even complete responders (NED) often have a "relapse" (i.e. they go from NED to having visible tumors again). And boy is it motivating to realize I can affect THAT!
Even better: in the three-step cancer growth process (initiation / promotion / progression), PROMOTION IS REVERSIBLE. I realized: holy crap, I don't have to sit here and hope some tiny death pellet hasn't already started growing?? If I catch it early, I can REVERSE it??? That's game-changing!
3. At a Christmas party I bumped into Dr. Othon Iliopoulos of Mass. General, head of their VHL program. (Heck of a party, huh?? It wasn't a medical event.) He told me fighting angiogenesis is also good against mets, whose size can be "vessel-limited."
So: choose foods that resist angiogenesis, and avoid foods (particularly fats) that cause inflammation.
A few specifics:
1. Green tea has powerful antiangiogenesis ingredients. Have 2-3 cups a day; steep for 10 minutes to release the goodies and drink
within an hour before they expire.
2. Green tea also binds receptors that affect tissue penetration into neighboring cells.
3. Raspberries & strawberries have lots of ellagic acid, which blocks angiogenesis by acting against VEGF and PDGF.
4. Turmeric (an ingredient in curry) is a potent anti-inflammatory. Buy turmeric, not just curry (which is only 20% turmeric). Also turmeric must be taken with black pepper, and ideally dissolved in oil.
5. As many have said here, cruciform vegetables are good (Brussels sprouts, broccoli, cabbage and cauliflower).
6. Blueberries and dark chocolate (not milk chocolate!) contain proanthocyanidins, which promote apoptosis (cell death). Yes, ladies & gents, you can fight mets by eating dark chocolate! (At least 70% cacao.) I now eat it at work, declaring that I'm taking my medicine. (You should see the looks I get; people are sorta getting used to my being playful about cancer.)
That brings me to a non-food item, psycho neuro immunology (a long word that I insist on breaking up):
7. It's finally been proven that humor and other mood-enhancers beneficially affect the immune system. (Psychoneuroimmunology: psych affects neurosystem which affects immune system.)
So laugh! And do meditative/prayer/yoga stuff!
More in a later post. Suffice it to say, I love being able to look at my kitchen with a sense that it's a weapon to fend off invisible future cancer events!
Note, about the above: In an e-patient community, people (ordinary lay patients) become very educated about their disease, help reality-check each other, and share what they learn.
This is very, very different from the isolation and lack of empowering information that plagued us just a few years ago. (See the opening anecdote of "E-Patients: How they can help us heal health care," Dr. Blakely & Mr. Murphy, which happend the same year the Web came into being.) The Internet has brought us together with each other, and has brought us together with information we might never have seen. It's let us share what we learned, reaching others who might have had even less chance of seeing it.
And here's the key thing: sometimes it goes beyond what patients can get from their own oncologists – even some of the best specialists in the world. "Because," as the banner on the e-patient blog says, "health professionals can't do it alone."
This is "Health 2.0" on the hoof. Here's the definition that some of us "crowdsourced" last June:
Health 2.0 is 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.And that is how it works these days. The Internet is altering the balance of power by bringing us together with information and with each other.
Sunday, December 28, 2008
It’s been three weeks since I last posted about my attempts to learn about the world of healthcare. I’ve entered a period of reflection while roving among different areas I’ve been studying: the politics of healthcare, the anticancer effects of certain foods, the rapidly evolving world of patient-centered healthcare. That, plus holiday commotion, has led me not to be sure WHAT to say.
It’s been a whirl. The last post was 12/9. Since then:
Sat 12/13: My chorus’s two Christmas Cabaret shows – some say our best show ever
Mon 12/15: Quarterly CT scan follow-up. My remaining lesions have shrunk another 16% in the past three months. Team says: “You’re doing superb!”
Tues 12/16: After work Dr. Danny Sands and I are interviewed by Matthew Holt of The Health Care Blog. It was going to be 30 min but became 56.
Same night: at a Christmas party sponsored by the Invest Northern Ireland people, who had me speak at their October dinner, by total coincidence I ran into Dr. Othon Iliopoulos, head of a kidney cancer program at Mass. General, . Immediately we dived into the power of one’s attitude (he’s a strong believer) and then I launched into questions I’ve had since re-“reading” Anticancer on CD, especially about fighting angiogenesis (the growth of new blood vessels that tumors need).
This was a Big Deal conversation for me. See, I’m now in the group where I have a 50% chance of relapse, and nobody can predict which 50% I’ll be in. That stinks - I am not the type to sit back and hope or fear.
See, Anticancer talks a lot about fighting early tumor growth with various foods, but I’m long past there: what I have left is distant metastatic tumors. I'd asked my oncology team about dietary factors, and they had no answers.
So I asked Dr. Iliopoulos if fighting angiogenesis is good against mets, and he said “Absolutely! Mets can be vessel-limited.”
This is huge news. More on this below. (He gave more detail about how anti-angiogenesis drugs work, but I won't get into it here.)
Weds 12/17: Chorus sang carols at the local hospital and veterans’ home. And this blog got nominated as Best Patient Blog.
Thurs 12/18: The interview podcast went live.
Sat 12/20-27: Christmas week, with a mini-vacation in nearby Newport R.I. The place didn’t have the promised WiFi service! So, gasping for air, I mostly took TIME OFF. And slept a lot. And played with Ginny, and read The Tao of Pooh, and visited wonderful people.
Sat-Sun 12/27-28: Returned, and got my hands on a hard copy of Anticancer, to seek details on those foods. (CDs are great for “reading” in the car, but no good for looking things up!) I sent some detailed notes to Robin Martinez, the terrific RN who co-manages my cancer patient community on ACOR, and after some back and forth, she responded “good work” and I posted it on the ACOR list.
Tomorrow night I’ll post it here.
Why the back and forth? Because I’m not interested in flake-level “this food cures everything” promotions. I’m only looking for things that really have some basis in cellular biology, particularly concerning how tumors grow. That’s what I liked about Anticancer – lots of well-documented, detailed information. What Robin provided was validation that it’s relevant to my type of cancer.
Such is the life of a stage 4 kidney cancer patient at holiday time. Not exactly interested in sitting back and doing the Woe Is Me, They Have No Answers thing.
Plus, this year I'm having a really remarkable sense that every day I live now is a day I might never have seen. So even when the weather stinks, it's like a miracle that I got to see it. Nice.
Wednesday, December 24, 2008
As my longtime supporters know, two pivotal moments occurred in my care: when I was referred to my oncology team at Beth Israel Deaconess, and when my primary doctor Danny Sands handed me a slip of paper that said on it "ACOR.org."
The time has come when, for the first time ever, ACOR must ask for donations. Go directly to their donation page, or read on.
ACOR, the Association of Cancer Online Resources, is the community of cancer patients who gave me absolutely the best information I found anywhere on the Internet. I've mentioned them many times: http://patientdave.blogspot.com/search?q=acor, because what I got from ACOR made a huge difference in my sense that I could beat this thing.
Plus, ACOR communities give vital emotional support. Here's a message that came through today:
My husband is on chemo for stage 4 colon cancer, he is not very happy and a bit difficult to live with! I have been having bad headaches and had a brain scan a few days ago just to check there is nothing sinister, the oncologist feels it is stress but thought it best to check with my history, stage 3 RCC. [renal cell carcinoma, the type I had]ACOR is a profound expression of people helping people using the Internet. It was conceived by a man whose wife had a bad cancer experience; he created it free out of its personal funds, it's grown to hundreds of thousands of users and each list is staffed by volunteers from the patient community. It's free to all and it's open 24/7, and believe me, both of those make an enormous difference when you suddenly learn that your butt is on the line.
My mother is in hospital in a city many miles away and I have not been able to get there yet. This is hard.
Today I have my 3 children with their partners and 3 grandchildren coming for some festive celebrations. I hope to find the magic of Christmas in all this and I would like to wish this for everyone on the list too.
Plainly put: no other resource anywhere outside my hospital gave me more accurate information, and nothing in the world gave me the confidence that the information I was getting from my hospital was accurate. My ACOR community was the best resource I had. And it's open to all: repeatedly we hear about people who have no health insurance, for whom ACOR is their only reliable resource.
Well friends, the time has come when ACOR needs our support. Please go to their donation page and donate what you can. The menu suggests $50, but of course smaller amounts are available - and larger.
How important is this to me? How important do I believe this is for the new world we're creating of patient-centered and patient-empowered healthcare? I myself am donating $1,000, in a year when money is not abundant. Your $5 or more will help too: as the email below suggests, we're going for breadth of support: many hands make light work.
The form gives you three picklists:
- Main ACOR group: mine is KIDNEY-ONC
- In honor of: "general" is okay, but you can use "in honor of a cancer patient" (moi) or "in gratitude for a doctor" (David McDermott) or "a nurse" (suggestions: Kendra Bradley, MeeYoung Lee, Gretchen Chambers)
Funds usage: Detailed plans have not yet been laid out but I myself have joined ACOR's "inner circle" funds team, and I assure you the goal is to improve ACOR's equipment and software, making it more reliable and more available to more people. At one point in 2007 the entire system went down. The network was unavailable for days, and some messages were lost forever. As awareness of ACOR spreads and the whole world of patient empowerment spreads, we simply can't go on forever with an all-volunteer staff using cobbled-together equipment and software. Plus, we want to add technologies to reach people who don't even have a PC ... today some of the most disenfranchised citizens around the world use only their phone for Internet access.
Thank you. Below is the email that I myself received about this, from Robin Martinez, one of the volunteers who runs the KIDNEY-ONC group. (She's an oncology nurse who lost her husband to kidney cancer.)
For many of us, this mailing list saved our lives or our sanity or both. Besides excellent information, we found comfort and friendship here. Today we can do something in return to make sure that we and others continue to have the same great experience with ACOR.
ACOR runs mostly on love and dedication -- but we do need some money as well. We must pay for hardware, software, web storage space, bandwidth, administration, legal costs, accounting, etc. Right now we are scraping hard to pay these bills.
Your contribution will make a difference. We are a non-profit group with proper credentials, so you can take a tax deduction for any donation to ACOR. We have a very easy way to donate on line via Google Checkout, which gives us 100 percent of what you contribute. You'll receive an immediate receipt by email which is suitable for tax purposes.
Please visit today: www.acor.org/donate/now/
While you're at it, please ask your friends and family to donate too. They probably know how much this list means to you. If every list member gave $5 and got nine or ten other people to give just that much, ACOR would receive over $1,500,000!
If someone must donate by mail, here is the address:
173 Duane St. Suite 3B
New York, NY 10013
However -- we strongly encourage giving online. That way there won't be any donations going astray! The procedure is easy and quick, and you get your receipt the minute the donation goes through.
Monday, December 22, 2008
This year I've met a lot of great, fascinating people and have had conversations I never would have expected. But one person stands out as, well, outstanding.
Jen McCabe Gorman has the brains of at least three mortals and the energy of twelve. She's an espresso-like writer - intense, dense, many thoughts, few words. A Dutch woman living in the DC area, she's out to turn healthcare inside out, and she's busier at it than anyone else I've ever heard of.
In all the things I've read this year, her particular focus kept catching my eye. Today I found out why. I found her blog, featuring a year-end sort of recap, which includes:
I'm addicted to improving care, via an almost rabid focus on advocating for transparent, usable online health content to support patient-provider conversation and subsequent decision-making.Huzzah! Hail to thee, fellow spirit!
- e-Patient Dave - 6:01 AM
Sunday, December 21, 2008
I don't know what to make of this yet but it's upsetting to me so I'm going to say something and leave it for further digestion.
I've been reading an awful lot about the enormous cost of healthcare in the US, and the various things people are doing to try and "transform the process" etc etc. Then I read stuff like this - stories of three situations in three states where major resources are being put into hospitals fighting with each other instead of getting the job done.
From well respected "Medical Quack" blog, Ducknet: How Hospitals Go To War - it's a hedge war with insurers.
Why is some of this happening, party because we let some of it occur, while the insurance industry (much like Wall Street) was busy investing in business intelligence software and working on their formulas or algorithms, much of healthcare was bliss trying to focus on healthcare. ... risk management is what runs healthcare today, not the focus of better healthcare as we are now observing a continuous downfall in all areas of healthcare when it comes to just getting taken care of. ...
As reported today in the Wall Street Journal, the pressures have even continued to accelerate with hospitals with having to sign up with Experian credit services, so before services offered can be considered, they are forced to look at the algorithms or formulas provided to hedge and see what the risk factor is if a patient will be able to pay.
From today's Boston Globe:
Fueled by profits, a healthcare giant takes aim at suburbsWatch the 2 minute video at the top of that piece - a doctor who's been in practice for 40 years, now being paid 1/3 less for the same work than Partners gets paid, because of how the big chain muscles insurance companies. (That aspect was documented at length earlier in the Globe's series, causing a major uproar, including one Partners executive asserting that their costs are higher because their patients are "more vulnerable."
Partners HealthCare's push has community hospitals running scared, and crying foul
I understand business, but we're talking about people's lives here, including many many people being unable to afford insurance or healthcare at all because the costs are so high. (See below, and I'll write more about that here in the coming days.)
I'm starting to wonder how managers can work in a system that's become so messed up, so thoroughly removed from having any priority on caring for people. When I read those articles and then think about the many many people who have been ruined by the cost of healthcare, I get really sickened. Pardon the expression.
One things seems sure: the current system of care providers trying to bolster their own position, and put each other out of business, is free enterprise at its worst. Those articles talk about investor concerns, with little sign that these hospitals' boards are enforcing care quality. (To the contrary, the Partners organization has recently been found to be entirely ordinary, delivering lower quality care than the less expensive community hospitals it's apparently trying to drive under.)
- e-Patient Dave - 5:03 PM
Boston Globe story here. The Picower Foundation has shut down. The story also explains how other foundations, including benefactors of Beth Israel Deaconess, are affected, though my hospital itself expects no substantial impact to pledged contributions.
- e-Patient Dave - 8:00 AM
Saturday, December 20, 2008
A great, short blog post on Paul Levy's blog. Paul's introduction:
A blogger named Bongi from South Africa gives a sense of what it feels like to be a surgeon. For those of us who are not, this is an important insight. It must be considered if we are interested in process improvement and better teams in the ORs:Very powerful writing. Please click and read it.
(And I just went to the original blog post ("gives a sense" link above) and I can see why this guy has been nominated as best literary medical blog, for his potent descriptions of the experience of being a surgeon.)
Friday, December 19, 2008
The other day I was notified that this blog has been nominated as Best Patient's Blog on Medgadget.T his is heady company to be in. Paul Levy's RunningAHospital blog won in two categories last year. On his blog tonight, he says:
"If you have favorites in these categories, please make nominations. It is okay to renominate some who are already nominated, as the folks at Medgadget will narrow down the list in each category to a few finalists based on several criteria -- and I am guessing that repeat nominations count in their calculations."I agree: if you have favorites in any aspect of medical blogging, do go and make nominations here. The nominations are open to the public. And only 5 people have nominated me so far. :)
If you want to be amazed at what people can do when they get access to a voice, click through on some of the nominated blogs, especially the patient ones. Wow: what stories. Peek at some of last year's winners, too.
- e-Patient Dave - 8:00 PM
Tuesday, December 9, 2008
Preliminary note added 12/26/08: Please see the comments - Doc3osh found a mistake in my reading of the CBO report that I referenced. Will fix later.
I want to get this one out of the way. This is my digging, not anything I've read (yet) in the book.
A common assertion from right-wing talk radio is that healthcare costs are high because of malpractice costs, which is because of tort lawyers. Let's explore.
This point was asserted in a negative review of Critical that I read on Amazon. In response, another person cited a Congressional Budget Office report saying that malpractice costs amounted to less than 2 percent of overall health care spending. Okay, let's dig and see what's real.
I traced the link and found that was in 2002. Details: $24 billion in malpractice costs; total healthcare spending $1.4 trillion, according to footnote 12 of the CBO report.
What's happened since then? Several times I've heard the figure $2 trillion as the current cost of US healthcare, but what year was that? I googled "total healthcare $2 trillion" and found that's for 2006.
That's up 43% in four years, consistent with the insane cost inflation in healthcare costs I've been hearing about. (Compare with the Consumer Price Index, up 13% in the same period. Healthcare inflation has been triple the CPI.) In gross numbers, that's up $600 billion in four years.
How about malpractice costs in 2006? $30.3 billion, up $6.3 billion in the same period. That's 1% of the $600B increase, not the lion's share.
So: I don't know who's responsible for asserting that malpractice is the cause of our healthcare inflation, but I conclude that it's either a manipulation or it's misinformed. It's certainly not from someone who looked at the numbers.
Sunday, December 7, 2008
I've started reading Tom Daschle's book Critical: What We Can Do About the Health-Care Crisis. This is an important book, because Daschle is the newly appointed secretary of Health and Human Services. It's his depiction of and prescription for healthcare in America. It's concise but detailed and easy to read. You should buy it; really.
I'll be summarizing it here using the approach I used in Best Care Anywhere: highlighting as I read, then posting the highlighted bits here.
So far, his reporting on our current reality matches what I've been able to learn from my reading this year of books and blogs.
As I've learned in studying data reported by PCPCC, the US is the only nation in the industrialized world that doesn't have universal healthcare. Not surprisingly, our overall level of health is also worse, which is bizarre because as I've reported, our per capita spending is also the highest, by far – more than twice the industrialized world's average.
And that's part of why 48 million of us have no health insurance at all, leading to people avoiding getting care. Which spirals into severe episodes, despite the vast evidence that regular care avoids the crises.
Did you know medical bills have been reported to be the leading cause of bankruptcy in the US? I checked Daschle's assertion (I'm spot-checking as I go), and here it is. Bonus tidbit from that report, not in Daschle's:
"Surprisingly, most of those bankrupted by illness had health insurance. ... 56% were home-owners. In many cases, illness forced breadwinners to take time off from work -- losing income and job-based health insurance precisely when families needed it most."And that was back in 2001, people. Watch what happens now. 533,000 jobs lost in November. And realize that this problem does not exist anywhere else in the industrialized world.
And their costs are lower. Everywhere but in America.
In parting, a presidential statement to ponder:
"Millions of our citizens do not how have a full measure of opportunity to achieve and enjoy good health. Millions do not now have protectionof security against the economic effects of sickness. The time has arrive for action to help them attain that opportunity and that protection.A natural question is how things got this way, given that the situation is no better than after 63 years of action and the highest spending in the world. Comin' up.
"People with low or moderate incomes do not get the same medical attention as those with high incomes. The poor have more sickenss, but they get less medical care. People who live in rural areas do not get the same amount or quality as those who live in our cities."-- Harry Truman, 1945
Tuesday, December 2, 2008
This post is scheduled to release as I'm doing a guest lecture at Tufts University School of Medicine for students pursing their MPH (masters of public health). The course is on consumer health web sites. The instructor is the amazing Lisa Neal Gualtieri, whom I met in March at a wonderful session she was leading (I blogged it live) called "Patient, Heal Thyself." :)
Here are the links I promised the class.
- My personal communities: www.ACOR.org, CaringBridge
- e-Patient Scholars Working Group blog
- e-Patients white paper: My chapter synposes
- Steal These Slides: Tom Ferguson's visionary prediction, when the Web was just months old, about how information-age medicine would turn the world on its head.
- My post on Evidence-based medicine (cites The End of Medicine)
- Making Sense of Health Statistics (excellent paper, discussed on the e-patients blog)
- HealthNewsReview.org: excellent site that evaluates the quality of reporting on health issues, particularly research. (Search for "statins" and you'll see how poor is the quality of most news coverage about statins.)
- Best Care Anywhere: Why VA Health Care is Better Than Yours - my five-part series as I was blown away by this fine book. Buy it and read it. Please; you should have your own copy. It's $10.17 on Amazon.
- The Pew Internet & American Life project
- Tom Daschle's healthcare book Critical - the most helpful reviews on Amazon*
- Patient-Centered Primary Care Collaborative (PCPCC)
- PCPCC slides on my blog
- Definitions of participatory medicine etc
- Overtreated: why too much medicine is making us sicker and poorer, by Shannon Brownlee - most helpful reviews on Amazon
One other thing: in October my primary care physician and I presented a session at the Connected Health Symposium conducted by Partners Healthcare. Video and slides are here.
Lisa, thank you for having me, and students, thank you again for going into public health. We need lots and lots of well-educated caring people creating the next generation of healthcare, and it was a privilege (and fun!) to meet with people who are learning to create Health 2.0 and do it well!
Remember - it's all about the community. Platform comes second. Start by finding out what people want.
* re "most helpful reviews on Amazon": I've found that when I'm in a hurry to know the good and bad about a book, I can go to Amazon and find the spot where it says "25 customer reviews" and click it, and the site will display at the top the positive and negative reviews that others have voted as most useful.
Think about that. It's 100% user-generated / community-generated opinion. People helping people and expressing themselves at the same time. That's Web 2.0, which is the foundation for Health 2.0.
- e-Patient Dave - 7:00 PM
From Science News:
When Florence Nightingale arrived at a British hospital in Turkey during the Crimean War, she found a nightmare of misery and chaos. Men lay crowded next to each other in endless corridors. The air reeked from the cesspool that lay just beneath the hospital floor. There was little food and fewer basic supplies.
By the time Nightingale left Turkey after the war ended in July 1856, the hospitals were well-run and efficient, with mortality rates no greater than civilian hospitals in England, and Nightingale had earned a reputation as an icon of Victorian women. Her later and less well-known work, however, saved far more lives. She brought about fundamental change in the British military medical system, preventing any such future calamities. To do it, she pioneered a brand-new method for bringing about social change: applied statistics.
Monday, December 1, 2008
My volume of recent posts on evidence and statistics (here, here, here, here) indicates how important I think it is that e-patients 'E'ducate themselves about 'E'vidence, as Sarah Greene recently wrote. Last week Ted Eytan steered me to HealthNewsReview, which scrutinizes news coverage of health stories. Newspapers and TV are covered.
When you're new to a subject, as I am to scrutinizing evidence, there's nothing better than this to help you learn. A few examples:
Elderly fare well in open-heart surgery (Associated Press) got two stars of a possible five:
This story failed to provide balance for a reader to understand the risks and benefits of this line of treatment, what other options are available, or the costs involved. Other than gaining the insight that the outcomes are better today than they were in 1989, the reader did not learn much beyond the fact that surgical treatment of coronary conditions may be an option for those in their 80s and 90s. Full reviewA single test to detect many winter ailments (Wall Street Journal) got a perfect five stars:
... a good job of presenting accurate, comprehensive information ... the test is presented in context of a key health issue: the under-diagnosis of the flu in vulnerable populations, such as children, versus the inappropriate and unneeded prescription antibiotics in cases where they are ineffective in treating the flu. This story takes a balanced approach in presenting the evidence supporting the pros and cons of the test. It could have been improved by stating that it is not necessary for most routine febrile illnesses in the outpatient setting. Full reviewA search for keyword "statins" shows that almost all stories on statins (at least the ones the site reviewed) are poor. Example, from the LA Times 11/10/08, Statins may benefit healthy people too:
This story fails to be skeptical about claims of self-interested researchers. Rather than pushing back against exaggerated claims of benefits, safety and guideline changes, the story magnifies them.Another review I spotted dinged an article for talking only about relative risk reduction, not raw numbers. That's consistent with the Making Sense paper, as I wrote earlier.
Ted Eytan is a pretty nifty MD. Clearly believes in teaching patients anything they want to know about.
Sunday, November 30, 2008
Continued from part 3
The final quarter of my first year started with an unpleasant inquiry into something I think is one dirty little secret in our insurance-dominated healthcare system: the "MIB" is a databank run by the insurance industry, to protect it against fraud by you, but with no protection at all for you. This racket needs reform like the credit rating agencies needed reform, to level the playing field.
After my first post about it, to my amazement, an MIB employee contacted me, and in an extended email exchange, simply argued with me and wouldn't answer whether anyone is responsible for the accuracy of the information they have about you. You should request your free copy of your record.
9/5: What's in *your* MIB?, and part 2 (after the email exchange) on 9/27
9/18: "Patient Centered Medical Home" makes it into NEJM
10/2: New York Times special section on healthcare
"...something's starting to come clearly into focus for me: to a very large extent, healthcare delivery in America is a stinking mess. ... In the broad population, there is not much listening, yet, for open, transparent discussion of what works and what doesn't. ... 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." ...
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."
10/2: Obnoxious ad against my hospital
10/7: What is Health 2.0?
Here's the definition I like: "Health 2.0 is participatory health care. The combination of content and community enables the patient to be an active partner in their own health care and the citizen to be an equal partner in improving the health system."
In October I was slated to speak at a dinner with Philip Longman, author of Best Care Anywhere: Why VA healthcare is better than yours, so I figured it'd be a good idea to read his book. Fortunately, it turned out to be a great book. I serialized my notes:
10/9: Highlighted in Best Care Anywhere - part 1
Part 2, part 2a, part 3, part 4 (the "Hard Hats" revolution), part 5 ("patient for life")
10/10: Human propulsion device for wheelchairs
10/17: "Medical home": where everybody knows your name
Explains what PCPCC has been talking about when they say "medical home." Dr. Ted says the concept has a marketing problem, because consumers (that's us) hear the term and think "nursing home," which is not at all the idea.
10/19: Runnymede: making light of the colonoscopy thing. (Results here.)
10/22: Important: All MRIs are not created equal
(Applies to MRI, not CT.) Vital information. I've had a few scans, and trust me on this: your hospital will not want you asking how their scanner compares to local alternatives. But your accurate diagnosis can depend on it, and you will have to push on it.
10/24: "Half of doctors routinely prescribe placebos"
Then the big event - my first serious speaking engagement at a healthcare conference:
10/29: Dr. Dan and I speak at Connected Health
Another book I've been reading is Anticancer: A New Way of Life, about things we can do to improve our odds. One thing it taught me is wonderful: dark chocolate fights cancer!
11/8: Chocolate Therapy!
The quarter nears an end with a decision to start questioning one of the principles I'd learned about in the past six months, evidence-based medicine. It's an important improvement in healthcare practice in recent decades, but it has limitations.
And this led to a flurry of increasingly informative posts both here and on the e-patient blog, which have rapidly changed my whole view of who and what we can rely on, as we search for information to save our butts when everything is at stake:
"On the fringes of medical knowledge, lives are at stake and medicine doesn't have the answers yet. What do you do?"This was my first post to be picked up by notable others. AmyT of the highly rated DiabetesMine blog posted about it, and Terry Graedon of The People's Pharmacy sent praise. (I don't mean to sound puffy; my point is that I've been working to educate myself so I'm able to converse at a reasonable level, know what I'm talking about, and eventually perhaps contribute some original insights. So this post is indeed a milestone for me.)
This arose from, among other things, reading The End of Medicine (medicine as we know it, anyway), which was recommended by a longtime industry friend. That book mentions the evidence for the effectiveness of statins such as Lipitor. That led to a series of incisive posts on the e-patient blog, including e-patient doctor John Grohol introducing me to a great paper:
11/15: Making Sense of Health Statistics and part 2 (11/17)
11/22: More on statistics: deadly omissions, deadly conflicts
Finally, I participated in a "blog rally" - at least
11/26: Engage with Grace: The One Slide project
Posts not directly related to my healthcare education:
Two updates on the status of my cousin Chris and his spinal chord injury:
11/7: PT equipment for tall people?
11/22: Sled hockey
And the usual ration of diversions sprinkled throughout -
9/20: Waking Up Is Hard To Do - nurse anesthetists doing a Neil Sedaka parody
10/1: Splitting this blog - announcement of the ImPatient Dave blog
10/10: Grass Roots Candidate (the e-Patient Dave Express!)
So ends my first year as a blogger. I can barely imagine what the next year will bring, but I bet it'll be fascinating and fun!
Saturday, November 29, 2008
Continued from part 2
In hindsight, the first three months (11/28 through the Texas trip) were germination, early thinking, with signs of what lay ahead. The second three months were about exploration and education, as I started learning the lay of the land, understanding my first layers of how the US healthcare system works.
I also saw that I really want to produce results in this area. So although I didn't write about it here, in late May I attended Landmark's Conference for Global Transformation.
I didn't have the prerequisites to be a registered attendee, but somehow that didn't stop me. (Imagine that!) I just wanted to be in the "space" of a mass of people who are actively engaged in changing the world in all areas of life, so I assisted on the production team.
And man, did I emerge with a different kind of energy and a clearer focus. Landmark's technology is a kind of "applied ontology," a sort of existential booster shot that fortifies who you are in life, with a promise of "the power to be effective in the areas of life that matter most to you."
Q3 (the third quarter of this blog) turned out to be my "coming out" - starting to gain a wider audience.
6/7: CaringBridge story
This was the Associated Press story about CaringBridge and CarePages by Stephanie Nano (a sharp reporter), which started with my story and featured a photo of my daughter Lindsey and me, going out to dinner to celebrate her engagement - an occasion that wouldn't have happened if things had turned out the way the statistics had suggested. :)
That same week, for the first time I was on a panel at the Mass Tech Leaders Council. They asked me to write something for their blog, which led me to write some material for new visitors in my next posts.
6/18: Why I blog and My cancer story - short version
During the spring on the e-patient blog we'd highlighted what we felt were some weaknesses in the viewpoint of CNN's "Empowered Patient" column. So I was very happy to be contacted by Elizabeth Cohen, health correspondent for that series, who asked my thoughts for a "pioneers" feature they were doing for July 4:
7/3: CNN's "Empowered Patient heroes" recognizes e-patient pioneers Tom Ferguson and Gilles Frydman
A profound moment for me was the discovery of two slides by Tom Ferguson MD, which he created when the Web was less than a year old. He foresaw (correctly!) how healthcare would be turned on its head when patients have access medical information and to each other. Visionary, foundational thinking:
7/18: Steal these slides
7/25: Illness in the Age of 'e'
Announcement of the paper and presentation that my doctor and I are doing.
Then came the series where I summarized the e-patient white paper over an 18 day span:
e-Patients: How they can help us heal healthcare, chapter 1: Hunters and Gatherers of Medical Information (8/5)
Chapter 2: Content, Connectivity, and Communityware (Includes the seminal "seven preliminary conclusions")
Chapter 3: Patient-Centered Networks: Connected Communities of Care
Chapter 4: The Surprisingly Complex World of e-Communities
Chapter 5: e-Patients as Medical Researchers
Chapter 6: Learning from e-Patients
Chapter 7: The autonomous patient (8/23)
Intermixed with that was misc. news:
8/10: Inspiring news from my cousin's blog
8/18: To heck with cancer; I don't like having a cold.
8/23: "Born To Be..." (levity from Levy)
8/28: Takin' It Back with Barack, Jack – still a great swing song for swing voters
And that brings us up to three months ago. For me the synopses of the white paper were the big moment: once I'd done that, I became about to express the content on my own. I wouldn't say I can quote it "chapter and verse" but I now have the ability to write and speak without that feeling of "What was that I read... wasn't there something about that in the white paper?"
Series ends with Part 4
Friday, November 28, 2008
Continued from Part 1
3/5: "Succeeding in online health" lunch meeting
and "Succeeding in online health" lunch: take-aways
Returning from Texas, I immediately had the chance to attend a technology lunch meeting on Boston's Rt. 128 high tech corridor. I started engaging in the conversation about a new generation of healthcare systems and companies.
"I'm not being anti-establishment here, I'm being businesslike. Peer-reviewed medical journals may be full of reproducible experimental results, but (a) they may not answer what people want to ask, and (b) as happened in my cancer, the best current peer-reviewed journal articles may not be useful anymore."
3/6: Susannah Fox's keynote at Health 2.0
"Earlier this week, at the Health 2.0 conference in San Diego, Susannah Fox of the Pew Internet and American Life project gave a terrific yet short keynote speech. I wouldn't be surprised if we someday mark this as a cusp, a turning point. It's the best quick answer to "What's all this e-patient stuff?", plus a bonus super-sharp insight into what the future holds."
3/7: When the Patient is a Yahoo
A response to an unpleasant article in Time called "When the patient is a googler." A vital point as patient and doctor alike wake up to the new world of patients participating in their care.
3/22: Recent posts on other blogs
3/22: The Minnesota "wrong kidney" cancer tragedy
A defining moment, for me. A year after my own nephrectomy, a case that vividly illustrates the value of giving patients access to their medical records online – - if for no other reason than to let them and their families check for errors.
3/23: Cancer patient empowerment for GenX and GenY
3/24: A Neuroanatomist Witnesses Her Own Stroke
Jill Taylor Bolte's phenomenal TED talk.
4/1: Randy Pausch is still kickin'
"Yesterday my wife sent me a very sad story titled Four Get Cancer from Teen's Donated Organs. This morning I wrote a heartfelt post about it on the e-patients blog. If you're trying to understand what the role of an e-patient is, in today's healthcare world, I urge you to read it."
4/13: Beginner's Guide, Part 1
5/9: Beginner's Guide, Part 2
Since the start I wanted to help people get oriented. I started this series and never finished it. Instead, this fall I "synposized" the white paper.
5/3: My cousin Chris: doctor-to-be, paralyzed, blogging
He's coming along strongly. Long way still to go.
5/6: A (female) e-patient clone of you know who
The e-patient blog starts its serious of guest e-patients.
5/8: Patient-Centered Primary Care
Thanks to Leslie Harkins, I got connected with PCPCC, which continues to be one of the best forces for pushing information top policymakers for bringing us back to the point where we have a "medical home" and where primary care is valued by the payment system.
5/20: The Launch of Google Health
5/24: More on Google Health: two reasons to be wary
As noted in the previous post, I'm now inclined to think that our interests (as patients pushing for change) may override the concerns I expressed here.
5/25: e-Patient stories: several types
As the guest series continued on the e-patients blog, a slew of different stories and scenarios arose. A fitting conclusion to my first full quarter as someone exploring the e-patient world!
5/26: Memorial Day 2008
6/4: Beth Israel Deaconess on ... Jeopardy??
Thursday, November 27, 2008
This weekend marks the first anniversary of my first blog post ever. Great time to look back, in preparation for looking forward.
I'm going to post a recap of the past year, in several chunks. This first one covers the first three months, from when I started, not knowing where this would lead. The three month mark happens to come just as I left to join the e-patient working group for their annual retreat in Texas.
11/29/07: Thank you, Beth Israel Deaconess!
Dr. David McDermott, oncologist; Kendra Bradley, RN, manager of my biologic therapy program; Mee-Young Lee and Virginia Seery, nurse practitioners; Dr. Megan Anderson, the orthopedic surgeon who fixed my leg; the nurses of Stoneman 7; Dr. Danny Sands, my primary physician, and, I later learned, a pioneer in the use of doctor-patient email. Lucky me!
I suppose I could thank CEO Paul Levy, too, but what does he know. :)
12/4: Thank you, Dr. Drew Wagner!
Then I remembered there was this surgeon involved, who removed the kidney. Oh yeah, him.Read this, if you haven't. Extraordinary surgeon, but I almost beaned him with my cane.
12/7: What's it gonna take?
12/8: For prettier statistics, omit inconvenient people.
Given that I've been talking a lot about statistics lately, I was surprised to see that it was one of my first posts. But today I see that misunderstanding statistics - or not reading them critically, thoughtfully, inquiringly - may be a root cause of the mess that American healthcare is in today.
12/9: Thank you, Harvard Pilgrim!
1/14/08: Don't fall for SEIU
This was an early warning. This union has gone on to use despicable tactics against this hospital, with all kinds of claims of employer abuse, meanwhile advocating an end to secret ballots when employees vote on whether to unionize. There's a lot about this on Paul Levy's blog. They're liars; don't believe a word they say.
1/19: What is the nature of wellness?
An early inquiry into the nature of the immune system. I continue to think, intuitively, that this is valid. And, in Anticancer, the author cites evidence that the immune system functions better "when it's in the service of a life that's objectively worth living" (whatever that means). My gut agrees.
1/20: On the health of complex systems
A note on my friend Dorron's little blog about his deep work with analyzing statistics to predict system failures. I see a future for this in healthcare.
(1/23: Dr. Sands steered me to e-patients.net)
1/24: What's next - Google Health??
My initial, highly skeptical take on Google Health. My views on this are changing: as I study healthcare I'm coming to think that (a) there's a lot of potential patient benefit in aggregating our data, (b) it ain't happening rapidly on its own anywhere else, (c) the privacy concerns that I spoke of are not nearly as "worse" in Google's case than than they are in HIPAA-covered entities, because in reality hardly anything ever happens with HIPAA violations (from what I've heard).
Bottom line, if reality today was what most people think it is (and I thought it was), Google Health would not be worth the risk. But it's not, and there's a real opportunity for us to take matters into our own hands. I'm likely to sign up.
1/26: Colas and kidneys
1/27: Books that make you dumb? I don't think so.
Another early post on misinterpreting statistics.
1/28: e-Patient? Yes, e-Patient.
After reading the e-patients white paper, I "re-branded" myself from Patient Dave to e-Patient Dave. Why? Because I discovered that everything about the way I'd approached my illness was completely aligned with the trends in the paper. And I immediately saw what I'm going to do with "the new life of Patient Dave": do everything I can to promote this agenda for positive change.
1/29: Seeking medical data on the web
"Last week's post on eDocAmerica cites a report by the US Center for Medicine in the Public Interest (CMPI) documenting that searching for medical information on the Internet can cause serious problems. Here's the comment I posted there (edited slightly for this context). Please read it listening for the shift in the wind that's underway with the e-Patient movement I wrote about yesterday...
"Having read most of the e-Patients "manifesto" (white paper) in the past few days, I find the CMPI report rather like a belching volley from a dying breed. (I know they mean well, but they don't yet get it.) ..."
2/7: Latest on the e-Patients blog
"In a time of drastic change it is the learners who survive, while the 'learned' find themselves fully equipped to live in a world that no longer exists.
2/7: Web 2.0 means we get to say.
A key topic I've learned about in 2008, at work and in healthcare, is what's called "Web 2.0." Some call it "the read-write Web" because you can post things on the Internet now - it's not "read-only" like the early Web, where you could look things up but you couldn't write anything into the Internet.
The impact of that has been massive. It's not just that we can write blogs and talk to each other; we can now be publishers, and we now have access to thousands of times more information than in the past. Enabled by this, Ordinary Us can learn things and make informed choices that were never possible.
Students of the subject call it User Generated Content (UGC):
"...This that you're reading, right here, is user-generated content.
"And the big thing about THAT is that it's enabled us to spout our opinions, for instance rating books on Amazon or even posting our own book reviews, as short or as long as we want.
"What this means in the world of e-patients is that we ourselves get to talk about anything we want; instead of reading only what a magazine editor thinks we want (or need to know), we ourselves get to start any discussion we want and take it anywhere we want.
"You could put it this way: Web 2.0 means we get to say. We get to say whatever we want, and we even get to say what gets talked about...."
2/10: An e-patient writes in Newsweek.com
(about Amy Tenderich of the widely-read DiabetesMine blog)
"Here's a perfect e-patient snip from her article:I'm just astounded to think that one sick mom in California can reach out to so many fellow patients, create a community, and actually turn the whole thing into a business."Amy's story illustrates a major aspect of the e-patient movement: that if patients (the consumers of healthcare) get to start conversations and other patients get to take those conversations wherever they want (a.k.a. "We get to say"), the most useful conversations will thrive, and all of us - consumers and providers alike - will benefit.
2/10: Don't be a jerk to your partner.
As one learns about the fallibility of the healthcare system sometimes there's a tendency to start barking at the doctors, which makes no sense. Some doctors may be arrogant fools, but IMO that's just as true of patients. And good luck to any patient who tries to play the doctor's role in treating kidney cancer or reconstructing a shattered leg.
The world of the future involved participatory medicine, collaborative medicine, a partnership: "The point of the e-patient movement is to create partnership with your providers. If your physician is new to the idea, share, don't clobber."
2/10: Let's spread the term "e-patient"
2/11: MSNBC covers CaringBridge and CarePages
2/18 (my birthday): Randy Pausch: "Alive and Healthy"
2/19: A Singing Valentine from a barbershop quartet
2/20: Our cancer journal is e-published!
I'm so happy to announce that my community's CaringBridge cancer journal has been published online, for anyone to download (free) or read online. Laugh, Sing and Eat Like a Pig: My Year of Living Cancerously now has an official home on the ACOR web site.
A week later, I headed off to Texas, to meet the e-patient team for the first time. Nothing's been the same since. :)
Continued in Part 2
- e-Patient Dave - 11:05 AM
Wednesday, November 26, 2008
Today many bloggers are cross-posting the item below, to encourage conversation about a topic that's close to my heart: how we want to die. Here's why I'm participating.
Last year I approached the end of life. I didn't get close to the moment itself, but the prospect was real enough that I started thinking about which of my organs would fail first and what it would feel like – not from a pain perspective but wondering what it would be like as my body lost strength and shut down forever.
Nothing's a better platform than that for thinking about patient empowerment issues.
It includes calling the shots on how it'll happen, including refusing to go along with unwanted treatments from providers. Nobody wants to think about that, but it still happens. Just last month my friend Paul Grundy MD, of PCPCC, reported that it happened to his own father. And he says it happens "well over 50% of the time."
Let's be informed, empowered, and prepared. As we enter this holiday season and families come together I hope you'll take the chance to discuss this before a crisis arises. My family and I had time to discuss what we want, but you never know.
Here's an image of the slide, and below is the post that many are sharing today. (The original PowerPoint slide is linked within the post.)
This has real consequences. 73% of Americans would prefer to die at home, but up to 50% die in hospital. More than 80% of Californians say their loved ones “know exactly” or have a “good idea” of what their wishes would be if they were in a persistent coma, but only 50% say they've talked to them about their preferences.But our end of life experiences are about a lot more than statistics. They’re about all of us. So the first thing we need to do is start talking.Engage With Grace: The One Slide Project was designed with one simple goal: to help get the conversation about end of life experience started. The idea is simple: Create a tool to help get people talking. One Slide, with just five questions on it. Five questions designed to help get us talking with each other, with our loved ones, about our preferences. And we’re asking people to share this One Slide – wherever and whenever they can ... at a presentation, at dinner, at their book club. Just One Slide, just five questions. Let's start a global discussion that, until now, most of us haven’t had.Here is what we are asking you: Download The One Slide and share it at any opportunity – with colleagues, family, friends. Think of the slide as currency and donate just two minutes whenever you can. Commit to being able to answer these five questions about end of life experience for yourself, and for your loved ones. Then commit to helping others do the same. Get this conversation started. Let's start a viral movement driven by the change we as individuals can effect...and the incredibly positive impact we could have collectively. Help ensure that all of us - and the people we care for - can end our lives in the same purposeful way we live them. Just One Slide, just one goal. Think of the enormous difference we can make together.
Engage with Grace: The One Slide project
We make choices throughout our lives - where we want to live, what types of activities will fill our days, with whom we spend our time. These choices are often a balance between our desires and our means, but at the end of the day, they are decisions made with intent. But when it comes to how we want to be treated at the end our lives, often we don't express our intent or tell our loved ones about it.
(To learn more please go to www.engagewithgrace.org. This post was written by Alexandra Drane and the Engage With Grace team)
- e-Patient Dave - 1:00 AM
Sunday, November 23, 2008
Saturday, November 22, 2008
It appears that my inquiry into statistics, which I started here and cross-posted onto the e-patients blog, has started something of a storm. I am amused and pleased - after all, the only thing I ever really wanted to do was turn the world upside down, and this is as good a start as any.
(Okay, any of you who think "That doesn't sound very modest, deB," give it up. This is MY blog, and I'm happy to have started something that I think is productive. :))
Here's how the blogosphere works.
First, I wrote about evidence-based medicine, just because I'd been mulling the subject after reading Anticancer. Then John Grohol, one of the e-patients.net authors, sent me a paper, which I wrote about here.
I cross-posted it on the e-patient blog. The timing was great, because that morning the NY Times piece came out, misreporting the new evidence on statins. (Note: I'm not saying they made false statements - I'm saying they didn't give us the info we need.)
The comments on that post led Dr. Ted Eytan to point out a great web site that evaluates the quality of health news reporting, HealthNewsReview.org. Here is their comment on the reporting (in the LA Times) on the statins story.
Gilles Frydman, founder of ACOR, dug into it and wrote Lies, Damn Lies And Statistics: Collective Statistical Illiteracy. (He did some digging and found that the first known publication of that expression was in reference to medical research!)
The Psych Central blog picked up Gilles's post.
Gilles continued Thursday, partially inspired by the issues raised by HealthNewsReview, and wrote the slash-and-burn What's wrong with this picture? He pastes in the conflict of interest fine print that appears at the end of the article: 345 words of disclosures about how the article's authors receive funds from the makers the medications described in the article. And the disclosure then ends with the delightful phrase: "No other potential conflict of interest relevant to this article was reported." [Emphasis added.]
And this was no tabloid rag - this is in the New England Journal of Medicine, one of the most respected journals in the world.
What would you think about news reporting by writers who are literally being paid by the people they're reporting on?
I think I'm going to make a point of keeping an eye on HealthNewsReview, and maybe start bitching at the NY Times when I spot them omitting vital information like that.
Anyway: in the comments on that post, Sarah Greene, who recently left the NY Times online health department, speaks from the perspective of someone who's been on the inside of a big modern news organization. In her comment she remarks, "More to the point, patients don’t get to wear that E-badge if they aren’t first Educated to understand Evidence."
She adds, "my shock-disbelief-sadness centers on the media. Can journalists be held accountable at a time when news organizations are pushing for more & faster & shorter, coupled with desperation for digital advertising dollars?"
All in all, I agree with Sarah's remark that it's up to you and me to dig into the numbers when a treatment is recommended. As Making Sense says, if we don't know the actual numbers, the whole concept of "informed consent" doesn't work.
And, sadly, a new contributor, Karen Vaughan, speaks up from the diabetes community and highlights something I hadn't noticed: "About 20% more people got diabetes in the drug group. For every life 'saved' by the drug, someone else got diabetes. Factor that into the 'costs' of the drug." That issue too is reported in Making Sense: every treatment (or decision not to treat) has side effects, and no informed choice is possible unless all that is laid out.
Vaughan answers the balance question, concluding: "If a person took a 30 minute walk per day they would have better results without the side effects or costs."
Wouldn't you think those alternatives should be laid out for our consideration in a journal that purports to inform the medical trade about how best to achieve health? I don't mind reporting on new medications, but simple decent scientific method requires documenting all the known, relevant pro's and cons.
- e-Patient Dave - 12:41 PM
If you believe in empowerment and making the most of life, no matter what you've got and regardless of what you don't have, you'll be inspired by this.
A tip of the hat to my cousin Chris McCulloh, who's making his way back from a spinal cord injury and recently discovered this sport. He blogs periodically.
I vividly recall how I felt when I was making my way through life during my medical challenges last year. They were challenges, but they didn't stop me from walking or driving or working as much as I could. I doubt that I would have played sled hockey, but then that's probably because I never played hockey before. :)
- e-Patient Dave - 12:35 AM
Monday, November 17, 2008
Well, wouldn't you know it??
A perfect example of Saturday's post just arose: Today’s NY Times discusses a “large new study” of Crestor, a statin, involving 17,800 patients. Well, let's take what we learned the other day.
The Times editorial reports that Crestor has dramatic benefits - 54% fewer heart attacks, etc. And the writer correctly asks, “Who should take statins?”
But these “relative risk reduction” numbers (percent reduction) are exactly what Making Sense warns against: what are the raw numbers? We don't know, so from what they wrote, we can't tell whether there's improvement for one person in five or one person in 5,000.
This is not to say we shouldn’t use statins. The whole point is that the Times piece doesn’t give us enough information to know.
And Making Sense argues that without such information, the whole concept of informed consent is a fiction.
Saturday, November 15, 2008
John Grohol, Psy.D., is founder and publisher of PsychCentral, a pioneering community of e-patients. After he read my post the other day about evidence-based medicine, he sent me a paper worth reading: Helping Doctors and Patients Make Sense of Health Statistics.
This is relevant to the e-patient movement because as you and I become more responsible for our own healthcare, we need to be clearer about what we're reading. Plus, it appears we could be more vigilant about what our own professional policymakers are thinking.
The paper is 44 pages, but even the first few will open your eyes to how statistically illiterate most of us are - and that includes MDs.
Consider this question, which was given to 160 gynecologists:
Assume the following information about the women in a region:21% of them got the right answer (#3, 1 chance in 10). 60% guessed way too high, the other 19% guessed #4. (That's 10 times too low).
A woman tests positive. She wants to know whether that means that she has breast cancer for sure, or what the chances are. What is the best answer?
- The probability that a woman has breast cancer is 1%
- If a woman has breast cancer, the probability that she tests positive is 90%
- If a woman does not have breast cancer, the probability that she nevertheless tests positive is 9% (false-positive rate)
- The probability that she has breast cancer is about 81%.
- Out of 10 women with a positive mammogram, about 9 have breast cancer.
- Out of 10 women with a positive mammogram, about 1 has breast cancer.
- The probability that she has breast cancer is about 1%.
The paper presents numerous other examples of statistical illiteracy (an example of "innumeracy"), misunderstandings of data that lead to serious unintended policy consequences. My personal favorite is the opening item about Rudy Giuliani's assertion that he's lucky to have gotten prostate cancer here instead of under the UK's "socialized" medical system. It's not because I don't like Giuliani - it's that his own misunderstanding of the data he was quoting led him to advocate something that had nothing to do with his actual odds. He himself would have been harmed if he'd been guided by his own best advice. And he's not alone in that.
The paper proposes uncomplicated ways to improve our comprehension. First among them is to stop talking in percentages and talk instead in raw numbers. Phrased that way, the same three facts that were given to the gynecologists is much clearer:
- Ten out of every 1,000 women have breast cancer
- Of these ten women with breast cancer, 9 test positive
- Of the 990 without breast cancer, 89 nevertheless test positive.
Another example echoed what The End of Medicine said about Lipitor. (Without Lipitor, 1.5% of the control group had a coronary event; with Lipitor, about 1% still had one.) A 1995 alert in the UK warned that certain oral contraceptives doubled the risk of blood clots in the lung or leg. Understandably, many women stopped taking the pill; within three years, 13,000 more abortions were performed, reversing five years of decline, and there was a matching increase in live births.
What was the risk that led to this? In raw numbers, one woman in 7,000 has such a blood clot anyway; with this pill, one more blood clot happened.
The irony in this case is that both abortion and childbirth carry more risk of clots than the pill itself. In other words, one benefit of the pill is that it avoids the risk of clots associated with the end of any pregnancy.
So although the number presented ("double the risk") was absolutely accurate, the real clinical impact wasn't nearly as absolute.
This is a taste of what's in the first few pages. It gets dry in places but even the first few pages are compelling and informative - and at no point does it require that you be a mathematician. The explanation of Giuliani's error is particularly good.
Thanks to the good Doctor John for the link.
Continued in part 2
Tuesday, November 11, 2008
On the fringes of medical knowledge, lives are at stake and medicine doesn't have the answers yet. What do you do?
As I've recently studied the nature of healthcare today, one thing I've learned about is evidence-based medicine. It's a discipline whose intent, at least in part, is to correct what you might call "medical superstition" - overprescribing certain treatments for no reason other than an individual doctor's preferences or superstitions.
Excellent researchers, now at Dartmouth, discovered widely varying practices, such as a fourfold difference in rate of certain surgeries (from tonsillectomies to hysterectomies) in some regions, even after correcting for differences in population. The discipline of evidence-based medicine is to prescribe treatments based on evidence that they make a difference, not based on local doctors' personal favorites.
What I'm also learning, though, is that the discipline has shortcomings. For one thing, not all evidence of effectiveness means something should be prescribed a lot. The End of Medicine cites Lipitor, the cholesterol drug (a "statin"). We spend $25 billion a year on statins. There's statistically significant evidence that it helps - a 35% reduction in coronary events. But that same evidence, if examined closely, shows that it only makes a difference for 0.5% of the population.
Specifically: 1.59% of the placebo group had a coronary event, but 1.03% of those who got a statin had one anyway. (n=19,243. Study=ASCOT-LLA.)
Looked at a different way: if you're over 60 with cholesterol over 240, you have a 51% chance of coronary disease sometime before you die. But 49% still don't. Which group are you in? Nobody knows: we're at the fringes of knowledge.
This reminds me of the situation with my cancer treatment, high dosage Interleukin-2 (HDIL-2). Depending on which study you read, it only works on 7%, 13%, or 20% of patients. At my hospital it works on 20%, and my team said that's largely because they've gotten better at predicting who it won't work on, so they don't even try. But still, only one in five responds.
End says we spend $25 billion a year on statins; this 2005 article says 12 million of us are on Lipitor, not to mention other statins. The 35% decrease is enough to make it justifiable to insurance companies and doctors. Think what else we could do with $25 billion a year.
Another limitation of evidence-based medicine is that if it's used as the gating criterion for using a treatment, it blocks many things that could be useful if you're in need now, and the firm evidence you need now has not yet been developed - or has been developed, and hasn' t been published yet. (See "the lethal lag time" in Chapter 5 of the e-patients white paper.)
Or it's been published and your doctor hasn't seen it yet. (Tens of thousands of peer-reviewed studies are published every year. Who can keep up?)
This comes up time after time in the book Anticancer, which I mentioned the other day. Sample quote from a woman at a breast cancer conference: "If we wait for you epidemiologists to decide what's what, we'll all be dead! We need to make our choices now."
This is not to say that evidence-based medicine is wrong. It's a valid method, but it needs to be understood for what it is, not swallowed blindly.