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.