Links for Tufts MPH class

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

Students, I said I'd upload my slides, but I'm too tired. :) If you'd like a copy, email me (address on the handouts) and I'll send them.

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.

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* 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.

Florence Nightingale, the passionate statistician

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.

HealthNewsReview.org: a great learning resource

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 review

A 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 review

A 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.

Happy Birthday to this blog, part 4

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:

11/11:Evidence-based medicine

"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 80 95 healthcare-related blogs posted this over Thanksgiving weekend:

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!

Happy Birthday to this blog, part 3

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

Happy Birthday to this blog, part 2

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??

Happy Birthday to this blog

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.
—Eric Hoffer"


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

Engage with Grace: The One Slide project

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.)

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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.

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.

(To learn more please go to www.engagewithgrace.org. This post was written by Alexandra Drane and the Engage With Grace team)

Video of our Connected Health presentation is up

I've uploaded the video of my presentation last month with my primary care doctor, Danny Sands. I added it to my original post about the conference, here.

It's a 55 minute talk, broken into six easy-to-eat segments. :)

More on statistics: deadly omissions, deadly conflicts

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.