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.

A new dimension in doctor-patient collaboration :-)

I was emailing yesterday with Dr. Sands about our videotaping Saturday (see below). The producer was advising us on wearing camera-friendly clothes, and he said not to wear bright white. We'll pick this up mid-stream. How rude.


----- Original Message -----
From: "Tom"

The Navy jackets are fine. I was more worried about the shirts. Often, people take off their jackets and have white shirts for their taping.. Muted colors are cool blues and green, grays, tan, some pastels,and other colors that are not white or too bright.

----- Original Message -----
From: "Dave deBronkart"

I'm not takin' off my jacket.... as my doctor (ahem) knows, my profile looks MUCH better in a coat.

Seriously. I get higher ratings as a conference speaker when I keep my jacket on.

----- Original Message -----

From: "Danny Sands (dzsands)"

And the rest of your clothes, for that matter...

----- Original Message -----
From: "Dave deBronkart"

Hey! Did I just witness a violation of doctor-patient confidentiality???

I feel a blog post comin' on.

Gone are the days when all power resided in the medical office, buster. Today we are free to TALK.

Come be in the studio audience for the live taping of "Illness in the Age of E"

UPDATE 3/26: Directions have been added in a comment below.


This Saturday, March 28, Dr. Danny Sands and I will videotape the presentation we've given twice before: "Illness in the Age of E: A Case Study in Participatory Medicine." We're looking for interested, engaged people to be in the studio audience.

I first became Danny's patient in 2003. He's my kinda guy because he thoroughly believes in using the internet and he thoroughly believes in patient empowerment. This all turned out to be a really good thing several years later, when a routine shoulder x-ray showed an ugly cancer that had spread to my lung.

In the talk, we share the story of how we used the internet in every way possible: email, accessing my medical records online from home, sharing my login with others who could help, joining a patient community, forming a terrific support group in my online journal, even emailing diagnostic photos in one case.

People have said it's a moving, inspiring talk that opens the mind to a new realm of what's possible when patients are actively engaged in their care, and when health professionals support patients in taking a participatory role. Danny and I are both experienced business speakers, and we've designed the talk to be of value to professionals and patients alike.

We need a head count! RSVP to epatientdave at e-patients.net. It's at Bryant College in Smithfield, R.I. from 11 to 12.

Everyone's invited: patients, family, caregivers, doctors, nurses, hospice workers, Federal health officials, everyone. The only prerequisite is that you care about the future of healthcare.

Which, by the way, just might affect you some day. So get with it!

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."

Best intro to "health 2.0" I've seen

At the TEPR+ conference in February, where I spoke with my physician Danny Sands, I had the pleasure of meeting the venerable Dr. David Kibbe. An august fellow. Or so I thought. :)

See, I'd known David through his appearances on THCB (The Health Care Blog, where all the big-dog policy wonks hang out). He writes some seriously erudite (and wordy) stuff there, for instance his Open Letter to the Obama Health Team in December. And the reams of comments that he gets, from far wordier people, has usually meant that jumping into that sandpile over there has been more than I dared attempt.

So little did I know, until I met him, that David is One Of Us. Not only is he whole-heartedly into the bottom-up disruption of today's healthcare, in a wholly participatory empower-patient fashion, he's really good at story-telling and getting the idea across.

To illustrate that, here's a 16 minute "TV pilot" he put together to convey what "Health 2.0" is about. It's entertaining, stringing together interviews with some people I've met and others I haven't. (Oh, and did I mention he schemed up a way to weave it into a supposed motorcycle tour, making the whole thing a business deduction?)

I hope you enjoy it, and, more important, I hope you "get" what Health 2.0 is about: refocusing healthcare on us, out here in the real world, particularly in web-enabled ways, as opposed its previous focus inside the fortress. 16:38.



Please do drop me a comment so I have some idea what you think, y'all! I'm on a mission here - it's more fun if I have some idea whether it's working. :)

Extraordinary example of the mind's influence on well-being

A friend writes: "If you ever needed an example of the mind's influence on disease, please see the figure at the bottom of page 3 here: Impact of exposure to war stress on exacerbations of MS. Wow."

The article is about relapses of multiple sclerosis during the Hamas war in Israel in 2006. The caption reads "Number of relapses per month. Eighteen relapses occurred during the 33 days of the war compared with one to six relapses in comparable time periods over the 12 months preceding the war. There was no increase in relapse rates during the 3 months that followed the war compared with the same period of the previous year."

Brings to mind a couple of thoughts:

1. It strongly reminds me that during my own illness, I put a high priority on the power of my state of mind. At all times, even when all the information was not encouraging, instead of pondering all that for no benefit, I asked myself (and often said in my online journal), "What could be said that would make a difference?"
               Note: as those who read my journal know, I wasn't in denial – I'm talking about where I chose to focus my consciousness.
   
   
2. It reminds me, in a new way, of the sixties poster that said "War is bad for children and other living things."

Comprehending the US healthcare budget

A classmate steered me to PageTutor, a website for website developers. It happens to have a great illustration that helps comprehend the enormous amounts of money people are talking about these days in bailouts. And healthcare.

Here's a million bucks' worth of $100 bills. (That's 100 packets of 100 bills; each packet is 1/2" thick.)


Here's 100 times as much - a million hundred-dollar bills, $100 million:


Ten of those - a billion:



And a thousand of those - a trillion. Check out the little dude, who's now in the bottom left corner:

And, ladies and gents, the US healthcare spend for 2008 was estimated to be 2.4 times that much. And growing.

This helps understand what I was talking about when I wrote A Thousand Points of Pain, about how much money is at stake in this industry. The problem is that when we try to trim costs, there's going to be a LOT of money at stake. A lot. And right wrong or otherwise, when we try to cut something out, somebody's going to hurt. And there will be resistance.

So as I said in that post, I'm not waiting for the system to reform itself: I think we need to get busy at building our own solutions. The system may well improve, which is fine, but I ain't waitin' for it.

(btw, that's a big part of why I decided to go ahead with Google Health and HealthVault, as I wrote last month. That has turned out to be a bumpy road... I'll be writing about that soon.)

What if, in tough times, leaders could treat workers as responsible adults, and workers proved them right?

This warms my heart: management frankly discussing hard economic times with workers, eye to eye, adult to adult. From Paul Levy's blog, Friday, about the situation at Beth Israel Deaconess Medical Center:

Update on the economy and its effect on BIDMC

He suggests sharing pay cuts, and other sacrifices, to avoid as many layoffs as possible. (He's not the first leader to do this; it just warms my heart.)

Equally heartwarming is how the people have responded.

Town meetings @ BIDMC

As I read that second one, emotion swept over me, and I realized: this flies in the face of all the people who've told me over the years, "People will let you down. Watch."

I prefer to see the human spirit in its fullest, best expression. We can make it through hard times. It'll be hard and resolving the economic dilemma won't be quick. But I am so moved at good people's willingness to stick together and help each other - especially the strong favorable response to Paul's suggestion that they all take a bit greater cut to minimize the impact on the lowest-paid workers.

p.s. Please see the added comment below from the head of the Albert Schweitzer Institute, who works at BIDMC.

About the Renal Tumor Program at my hospital

As some of you know, a while ago my oncologist and surgeon, David McDermott and Drew Wagner, asked if I'd be willing to be videotaped talking about what I think about the Renal Tumor program they offer. Well, you know me – please don't throw me in that briar patch! Besides, since I feel pretty strongly that I owe them my life, the least I can do is tell the story to a million people or so.



In a couple of shots you can see my wife Ginny. And, very sharp-eyed long-time Bostonians may be able to recognize that the unnamed fellow in those shots is Gary Gillis, former sportscaster for WHDH-TV. He's the producer of this video.

More details about the Beth Israel Deaconess Renal Tumor Program are on their web site.

(As I write this, the video player is behaving very balkily for me. I don't know if it's my computer or the Brightcove video server. I expect they'll get it worked out.)