Trust yourself. You know more than you think you do.

In the new Society for Participatory Medicine we assert that patients have a lot to contribute to their well-being and to their own care, and ought to do so.

We know some folks can't quite believe that, or aren't quite comfortable with the idea. So we scoured the earth for the newest, most radical thinker's opinion on this. His words are on the fridge magnet that I bought the other day at Whole Foods Market: "Trust yourself. You know more than you think you do."

No, wait ... that's Dr. Benjamin Spock, writing the very first words of his classic baby book.

In 1946.

Reality is what it is, regardless of what we think

It's come time for me to say publicly something I've been saying since the beginning of my cancer case 26 months ago. It has to do with the power of our attitude, how we choose to view our circumstances.

Reality is what it is,
whether we know it or not,
and regardless of what we think.

In my community of other kidney cancer e-patients on ACOR, people are repeatedly faced with news they never wanted to hear, uncertainty, circumstances they were not raised to deal with. I know what that feels like, and no matter what your circumstances are today, chances are good that you too will face this – for yourself, a parent, a child, a loved family member, a loved friend.

Reality is what it is, whether we know it or not. For instance, as I'm fond of saying, "Oxygen was real and was doing its thing, long before Joseph Priestley figured out how it works." Among other things, this realization helps understand that we may have access to all kinds of things that science hasn't discovered yet. It also highlights that disempowering thoughts are useless, so why bother?

The other day in my ACOR community a woman named Sally (not her real name) wrote a note titled "Question for caregivers whose loved ones have passed," wondering about the decisions she and her husband are facing along the way. Here's my response.

---

Sally, I feel for you. I well remember those days in my case, knowing that what we had to do was educate ourselves and assess our choices. There was no way to know how it was going to turn out. It felt desperate at times. I'll never forget reading those words on the web pages for my disease: "Outlook is bleak." "Prognosis is grim."

I think everyone deals with this differently. After the initial shock I found myself saying "reality is what it is, whether we know it or not. I had cancer before the diagnosis; I have cancer after the diagnosis. The main difference is that now I know it. This is scary, but it also means I have much better ability to deal with it. What are my choices?"

With that approach, I had the experience that knowing I have cancer is empowering and enabling, MUCH better than not realizing it.

(I should note that for years I've taken courses from Landmark Education, a personal growth company that among other things teaches us to be clear about the difference between how things are and our thoughts about them.)

As I say, everyone's different. I personally have a strong gut feel that attitude makes a big difference, and the relatively new field of psycho-neuro-immunology supports this: they're studying how mood/attitude (psych) affects the nervous system (neuro) which ties to the immune system. There's real evidence now that attitude can boost the immune system. So I want my attitude to be strong, action-oriented, rather than victim-oriented.

Some might rightly say I'm a "victim" of cancer but for me there's no use in that.

We know that thousands of years ago the function of our anxiety was to help us be alert when a tiger might be about to pounce, so we could take action. Today, when we learn we have cancer, we get anxious and we take action. Beyond that moment, the anxiety has outlived its usefulness. So sometimes I'd remind myself "Yes, this stinks. Thank you for the alarm, Mr. Anxiety. Now, what are my options?"

All the while, I knew these really might be my end days. But there was no use for any other attitude than "what are my options?" With the attitude I chose, I became better able to fully experience life if it DID turn out to be my end days.

I also found that being in touch with my community (family, online CaringBridge journal, etc) about my status, thoughts, and feelings would help clear my mind. From them, I got back messages of support and encouragement. And some of them said "I can't believe you're being this way about it. You're amazing." And that left me feeling "Huh, maybe I can beat this thing, regardless of the odds."

---

Think about this,too: none of us knows how long we'll live, and patients with a fatal diagnosis have (oddly enough) the advantage of knowing that it's time to wake up and pay attention now. No sudden death for us, nosirree; we have advance notice.

My advice to patients everywhere, regardless of circumstance: Use your mind as an asset, not a liability.

No matter where you are in your journey, choose to be present in the moment, clear about your choices, and the master of your attitude.

Or, as my wonderful sister says about the game of life:
"Must be present to win."

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

Cross-posted from the e-patient blog

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

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

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

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

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

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

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

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

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

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

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

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

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

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

• Embrace knowledge symmetry.

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

Making Sense of Health Statistics

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:

• 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)

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?

1. The probability that she has breast cancer is about 81%.
2. Out of 10 women with a positive mammogram, about 9 have breast cancer.
3. Out of 10 women with a positive mammogram, about 1 has breast cancer.
4. The probability that she has breast cancer is about 1%.

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).

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.

With this view, 87% got it right. (Of the 98 women who tested positive, only 9 actually have cancer: about 1 in 10.)

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

New York Times special section on healthcare

From the e-patient blog Wednesday:

New York Times Health Section

The New York Times published an amazing array of health articles yesterday, each one of which is worthy of a discussion on this blog (and not just because we were mentioned in this one).

But I also want to take a minute to appreciate the entire online Health section of the Times, which consistently grabs my attention with its mix of articles, blogs, reference materials, and multimedia offerings. I love reading the comments appended to some of the articles and wish that more articles could turn into such forums. For example, the comments attached to You Can Find Dr. Right, With Some Effort are as useful and thought-provoking as the tips outlined in the article.

On a good blog, the comments are often as valuable as the post itself. (It's all about community, y'know.) A couple of comments on that post are thought-provoking, not the least of which is from Sarah Greene (manager of the Times online health presence).

The comment that really got me is from Christine Gray, a mother who experienced the rudest, most disempowering treatment by doctors who (she says) were annoyed that she wanted to see her daughter's lab tests, etc. Only when she got connected with a powerful peer patient community (on ACOR, where I found mine) did she learn that those same arrogant doctors had made several important mistakes, while belittling her.

You should go read Christine's comment. But in case you don't, I'll post my reply here, because something's starting to come clearly into focus for me: to a very large extent, healthcare delivery in America is a stinking mess. In this post I'm not talking about the financial aspect, or who has access to the best care - I'm talking about the simple ability to execute expected procedures competently.

Here's what I wrote:

Christine, thanks for your comment. The e-Patients White Paper e-Patients: How they can help us heal healthcare (PDF, wiki) details many such stories, but I'm frankly disheartened to hear that yours happened as recently as 2003.

As I talk with people involved in transformation of healthcare, and I raise various issues from that paper's research, I often hear "But we've already figured out how we're going to solve that one." Those people have surely never faced a loved one's medical crisis and experienced the consequence of the fact that it's not solved now. To the contrary, it's too often rigidly entrenched, as you describe.

Conversely, people not involved in transformation often don't want to hear the system's got problems - understandably. (It's like hearing your local fire department, whom you might need desperately one day, is a bunch of drunks.) In polite conversation we have a cultural taboo against saying anything like "These doctors blew it." Doing so often sounds like a kneejerk anti-establishment rant, or like the bozo who told me in May that "Chemo doesn't work. It's a fraud. All you need is ionized water." In the broad population, there is not much listening, yet, for open, transparent discussion of what works and what doesn't.

I myself only read that paper in January, and as time went by I saw that there were several kinds of e-patient stories, and I wrote about them. Many stories tell of doctors who are helpful and supportive of participatory medicine, and many more tell of doctors who are like the ones you describe.

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." Clearly the doctors you faced still don't agree with Spock, a half century later.

As much as I love my hospital, they made some serious mistakes in my cancer case last year. After my nephrectomy the nursing team forgot to remove my catheter on the specified day (apparently that was important), and when I came back in for a follow-up urinalysis at a critical time a few days later (to see if my remaining kidney was working ok!), the lab simply lost my specimen. I couldn't just do another one; the moment had been lost. Yet the hospital had no process in place to make sure this potentially vital specimen wouldn't get lost.

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.

To be sure, lots of good work is in process. But there's not nearly enough of it, and many facilities haven't even begun the process, and many more don't even agree there's work to be done.

Then we layer on top of that the attitudes of the subset of doctors who think they're godlike - again as detailed in many e-patient stories. Certainly not all of them are like that - mine last year were wonderful. But as Christine's story shows, there's way too much of it still out there. Is that who you want caring for you in your crisis?

I was fortunate to encounter one of those in my 20s - a guy who took offense at my asking if I'd get a scar from the procedure. I should have run, but I figured a doctor wouldn't be unprofessional, right? Well, he was - to remove a tiny basal cell on my nose, he decided to do a large crescent-shaped skin flap, and he never did come see me to discharge me - I had to check myself out. And within a year he'd skipped town.

I'm not disfigured from it but I learned my lesson: do not tolerate professionals who think we shouldn't be privy to our medical data, much less consider that we might have something to contribute. We do.

Many thanks to the Times for publicizing all these ways patient empowerment is happening.

e-Patient stories: several types

As I talk to people about "participatory medicine" and patient empowerment, I've needed to think out what the term really means when the rubber meets the road - when you (the patient) get responsibly involved in your own health care. So I've been listening for stories, and they seem to fall into two categories: where doctors were helpful, supportive partners, and where they weren't.

The sources of stories are at bottom. Here's my personal concusion.


Helpful, supportive doctors

Doctors today are under enormous time and cost pressures. The e-patient paper "e-Patients: How they can help us heal healthcare", written mostly by MDs, clearly documents how doctors no longer get paid for "going deep" to research every condition they encounter. Now, with the Internet, patients can help.

• In some stories, doctors admitted they were stumped. The patient and family did deep research and found new information that turned the tide.
  
  
• In other stories, docs felt they had the diagnosis, but welcomed it when the patient and family brought new information.

That's "participatory medicine" in action.


Not-so-helpful doctors

Other stories unfortunately echo the stereotype of doctors who think they're god-like.

• Some told of doctors who were arrogant. One patient was asked "Who has the degree here, me or you?"
• Some doctors poo-poo'd the patient's concerns (when they felt "This treatment doesn't seem to be helping me"), and the patients turned out to be right.

"E-patient" means you and I know we can participate in our care; expect to have our questions honored; are willing to learn how to research effectively.

Below is a list of the places I've come across stories. This isn't a scientific study - as one of the e-patient doctors says, "The plural of anecdote is not data." :-) This is just me sharing what I've observed.

Most of these stories are just a few sentences. Well worth reading, if you ask me.

==========

Sources of stories

Two weeks ago on the e-patient blog we started collecting e-patient stories. It started with an excerpt from Randy Pausch's best-selling The Last Lecture, demonstrating how he matched the e-patient model: actively engaged, learning everything he could, participating in his own care as much as he possibly could - and being fully supported in this by his care team.

Comments on that blog post added five more e-patient stories.

At least another dozen stories are in the e-patient paper (see link above).

Then, CNN.com drew quite a reaction when its "Empowered Patient" feature wrote a column "5 mistakes women make at the doctor's office". (That's a heck of a title for a feature about empowerment, isn't it?)

Dozens more e-patient stories were added to comments on that article and on the e-patient blog's post about it.

Beginner's Guide, Part 1

Updated 4/13/08 to make the history more accurate.

I'm starting the process of developing a Beginner's Guide to E-Patient, or you might call it a Patient's Guide to Participatory Medicine. I have a headful of ideas and I don't know where to start. So if there's anything you want to ask, you might as well say so, and I'll write about that.

--------

Meanwhile, here's the first item:

What's with this "e" thing??

The "e" in e-patient originally stood for electronic, email, that sort of thing, as used by patients. It was conceived (to the best of my knowledge) by Dr. Tom Ferguson, founder of the e-Patient Scholars Working Group. It later came to represent empowerment - patients being empowered to be active partners in their care - and has now evolved to "empowered, enabled, equipped, engaged."

The importance (and viability) of empowered patients, actively engaged and participating in their care, is detailed in the e-patients manifesto.

So what does that mean to you?

If you're new to "e" and you're here as a physician, journalist, or researcher, I ask that you change your perspective on healthcare delivery, so the hospital and doctor aren't at the center - make the patient be your starting point, and look outward from there to see what happens around that hub.

Put yourself in the point of view of a patient (your time will come), and read on.

If you're here as a patient, or to support a patient, or as someone who might be a patient someday, this is your starting point.

When I got my cancer diagnosis last year, I had no idea how much of a role I was about to play in my own care - much less why it was important for me to do so.

When you have time, I urge you to read the manifesto (above). Written by doctors and skilled researchers, it's full of information about

• How the healthcare system is different today from what I imagined
• How patients are changing their outcomes by actively participating (with their doctors) in their own care
• How some doctors, but far from all, are "getting it" and making the transition to empowered patients being active participants in their care, and what you can do if yours isn't
  
• Why in today's world of exploding medical information and treatments, the best medical journals are often no longer the most useful resources - online peer communities are.
  
• How patients are using those online peer communities (such as ACOR) to connect with others who share their disease, their concerns, and their personal research findings
  

In several hours that document will change your approach to participating in health care. You'll become empowered (free to act) and you'll see why you want to be actively engaged in your care.

The next step will be to become equipped and enabled. More on that later.

Part 2 is here.

E-patients: the system is valuable, and so are you

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.

The post is not about the tragedy itself; it's about one of the pivotal points of learning in becoming an e-patient.

One of the central barriers to "participatory medicine," as we're calling it recently, is that some doctors (and patients) don't yet understand that there's far less risk in patients self-educating on the Internet than was once feared. The e-patient white paper (available on that blog site) documents this in some detail. My post looks at this incident as a painful example of that point.

It's really, really important that you understand that lesson and explain it to others. It's the first step toward becoming a really effective partner in the care you're seeking, whether it's for yourself or a loved one.

Web 2.0 means we get to say.

My post below mentions "2.0" stuff. I've been dealing with this subject at work for the past year, but I know a lot of you have only recently heard this "buzzword" buzzing around like an unexplained annoying gnat that keeps getting in your ear, making it hard to think.

The e-patients blog yesterday has the best layperson's introduction I've ever seen for these key aspects of Web 2.0:

• blogs
• wikis (Wikipedia is just one example)
• social networks
  
• social bookmarks.

Worth a view. (These little "training videos" require having your speakers on.)

The big deal about all this is "user generated content" (UGC). See, in the early days of the Web (now known as Web 1.0), the Web was read-only: all web "content" (the stuff you read or view) was created by people who had access to a Web server and knew all the geeky stuff you needed for hand coding a web page.

In contrast to that, today we can create content: Look, I'm sitting here right now, blogging about whatever I want - just as if I could conceive and write a book and get it printed and have it appear in every library in the world, instantly. (Because it IS, right now, available on every computer in the world that has an Internet connection, including my iPod Touch.)

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.

This is a core principle cited in the e-patients white paper, which you really should read, in PDF or wiki form. More to come.

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.)

I went through this in the typesetting industry 20 years ago when desktop publishing (DTP) came along. "Horrors, don't let the unwashed own FONTS, for heaven's sake! They'll mix serif and sans in unclean ways!" And so they did. And some still do.

Similarly today, blogs mean a lot of people who can't spell get to publish, or post comments like "u r dum." But with desktop publishing and now blogs, a slew of people have learned how to use fonts (or be publishers) - orders of magnitude more people than all who'd had access to those previously closed technologies.

Of course that analogy's not perfect - nobody gets hurt due to klutzy font use (usually, heh). A better analogy is letting people drive: some people do get hurt by not being driven by a professional. But you ain't gettin' me to buy an armored Hummer and hire a driver every time I want to go to the grocery store.

I need to say here that I completely respect the people who are warning us about garbage Web content. They're right. But there's at least as big a risk from thinking the average physician (even the most conscientious ones) can be on top of all the conditions we show up with. It's especially true given the explosion of new medical information - who could possibly keep up?

While beating a nasty cancer in 2007, I waded through a ton of bad information on the web - and all of it came from respected medical web sites. All of the information I found was out of date; it had all been gathered (and peer reviewed!) before any of today's treatments existed. And when I attended a patient conference that fall, the same obsolete statistics were still being quoted!

The point isn't that "the establishment" is mucked up. A superb part of the establishment (Beth Israel Deaconess in Boston) saved my butt. The point is that there's no substitute for taking responsibility for your own situation. That includes not just learning everything you can get your hands on; it includes taking responsibility for evaluating what you find, learning to sort the garbage from the gold.

And for me the only solution to that is peer review - by *my* peers, the other patients whose butts are on the line, like mine. I joined the ACOR.org listserv for my cancer, lurked for 2-3 days, then asked "Where's the best place for me near Boston?" Within 90 minutes I had three responses, all saying the same thing.

Try asking a medical journal that question when you're in big trouble and need an answer fast. And try figuring out how to tell whether the answer you get is reliable.

Yeah, there's garbage on the Internet. There are also people dying from misinformation due to out-of-date physicians and from overloaded good physicians. (Join one of the ACOR listservs and hear the stories that pop up all the time.) The only viable solution I know is empowerment and teaching each other how to be personally responsible for what we read - and partnering with an excellent physician. It worked for me.

I knew that from personal experience - and then along comes the e-patient manifesto, saying exactly that. Cool.

Please, please, doctors (including CMPI): read the "manifesto," and please understand what it says on page 22: "We modestly suggest that the tentative conclusions below are no more 'anti-doctor' or 'anti-medicine' than the conclusions of Copernicus and Galileo were anti-astronomer."

----

What do you think? This is a significant issue. You, or someone you know, will face this issue first-hand, and if you're in my generation it'll most likely happen within 10 years (or already has). What do you think? How will you advise family and friends?

e-Patient? Yes, e-Patient.

In the past few days, with my discovery on 1/23 of the e-Patient Scholars Working Group, my entire outlook on life has changed - so much so that I'm changing the title of this blog from "Patient Dave" to "e-Patient Dave."

That's because I've found my purpose for this blog. And that in turn is because my experience over the past year is a ridiculously close match for the principles and practices recommended by the group. So I think I've found the answer to a question I've asked in recent months: "What am I going to do, what am I going to create in the world, out of my experiences of the past year?"

I'd heard about this "movement" (my term, not theirs) earlier in the month from Dr. Danny Sands, my primary physician, a member of the group. I'll be saying more about the subject in coming posts, but I'm going to start with a few words and a few links. (These will be duplicates, for readers of my CaringBridge journal.)

Here's what I found last Wednesday when I googled the term. First I found the eDoc America blog, which said:

'ePatients are those that use e mail and the internet to become empowered to manage their own health and become partners with their providers. From saving lives to saving dollars, this blog both entertains and instructs in ways to use the internet for better health care. Approach with caution—this may radically change your views about your approach to the health care system!'

(The page with that text went away when the blog moved in January - but it'll live forever here :-).)

Here are a few links I've found since then:

• The e-patients white paper - a manifesto, brilliantly written, with compelling true stories that will bend your outlook on who's responsible for what in health care. 126 pages but it reads fast - someone I know read it Friday afternoon, and called it "thrilling." (The paper was a research project supported by a Robert Wood Johnson Foundation Quality Health Care Grant.)
  
  
• Their blog and its RSS feed
  
  
• A guest appearance (last week!) by group member Dr. Alan Greene on NYTimes.com. (He's founder, with wife Cheryl, of www.DrGreene.com, one of the first e-patient-centric pediatric sites.)
  
  
• An interview with group members Joe and Terry Graedon, founders of PeoplesPharmacy.com and hosts of a Public Radio talk show. (Check out their classic e-patient editorial, just last Monday: "Don't be a good patient." Huzzah!) (And no, it doesn't say "Doctors are jerks." Just read it.)
  
  
• ACOR.org, the free collection of online cancer resources founded by group member Gilles Frydman, including the [KIDNEY-ONC] kidney cancer email group that played such a pivotal role in my case last year.
  
  
• A landmark 2001 article in Wired about people taking command of (and responsibility for) their care. The article won the American Society of Journalists and Authors 2002 Writing Award for Outstanding Article of the Year: Reporting on a Significant Topic. Note - that's not "significant medical topic" or "significant e-topic," it's any topic.
  

There's much more, but enough is enough for a first post. Suffice it to say, this looks to me like the Sixties motto "power to the people," made real in the world, in a way that's touching many many people and could be touching far more - even everyone.

And suffice it to say, it's been a busy few days for me. As I've said to several friends, "It's as if I've discovered a parallel universe where everyone speaks a language I thought nobody else spoke."

I can't believe I went through last year without knowing about this group. Well, I do now.