Tuesday, December 29, 2009

More on surgical options from my doctor

Last May my urologist/surgeon, Dr. Andrew Wagner, graciously did an informal interview with me about surgical options for kidney cancer. That post is here.

People on my kidney cancer patient community on ACOR.org were recently discussing the different ways their surgery was done. I asked Dr. Wagner for his thoughts about "open" surgery vs laparoscopy (I had the latter), and he responded:

There are several options for open nephrectomy, some incisions removing portions of rib and some not.

All of the open options ("back or front or side or flank etc.") are generally decided on based on surgeon preference and training. For example I have a "go to" incision for open nephrectomy called a thoracoabdominal incision, it is a flank incision but extended to also open the diaphragm. This is a fairly common urologic incision for open kidney surgery.

I need to remove a piece of rib about half the time with this incision. I like this (rather large) incision because the only time I do open kidney surgery is if the tumor is very large or if the patient has had major abdominal or flank surgery already. In my opinion and experience, over 90% of kidney tumors should be able to be completed laparoscopically.
(reprinted with permission)

My hospital's renal tumor program web site, with contact info for the doctors, is at www.bidmc.org/renaltumor.

Tuesday, December 22, 2009

Meeting Dr. Amy Ship - "There's no billing code for compassion"

Today I met Dr. Amy Ship, a primary care physician at Beth Israel Deaconess Medical Center, who was the recipient last month of the Compassionate Caregiver Award from the Kenneth B. Schwarz Center.

What a wonderful person. She's not involved in all the policy stuff, the "health 2.0" stuff, the "eHealth" stuff where I spend my time - she just wants to deliver care.

Amy and I were talking (very informally, like this incompetent informal photo :-)) about what we (all of us - that's you) can do to get everyone else out of the way so patients and clinicians can just do care.

One line in her acceptance speech: "There's no billing code for compassion." And that led to an idea.

We have an idea for a campaign to raise awareness about this. I'm sure somebody else has used this name, but to me it's about the doctor-patient relationship, so it should be called:

"Who Cares?"

Waddaya think?

Here's Amy's acceptance speech, which I first saw on Paul Levy's blog. It was so inspiring I called and dug her up. (Doncha just love how social media lets ideas spread??)

Monday, December 21, 2009

A celebration of you: please sign in

To say the least, this has been an astounding year for me. It's not New Year's Eve yet, but I want to get started on remembering everything that's happened.

I can't begin to get a handle on the scads of people I've met this year, so I'd like to ask you to sign in, in a comment, and say hi!

You can read this retrospective if you want (this is only the posts on this blog, not e-patients.net) or just skip to the comments and say hi. I'll really appreciate it.
_____________

On New Year's Day I posted about "Physicians as coaches, patients as players" - one of my most-quoted concepts since then. Participatory medicine!

In January I first heard of Jay Parkinson, then met him. In May he was in Fast Company's "Doctor of the Future" article; in September I was in Health Leaders "Patient of the Future" article; and today at my day job, we released a podcast interview with him.

In February I spoke at the TEPR+ medical records conference and discovered that doctors mainly hate the medical records systems that are available. They're overpriced and hard to use. I met many wonderful people there.

I also wrote my first post about the business of healthcare, "A Thousand Points of Pain," after realizing that with the massive amounts of money at stake in US healthcare, the money interests were going to fight tooth and nail to protect their stake. I said:

I'm starting to think that as patients, our fastest access to better solutions is to take matters into our own hands: use the Internet to gain access to information (and to each other) and create new tools of our own.

Let's get moving – let's show 'em how e-patients can git 'er done! Let's gather our facts, band together, create new tools, and spread the word to each other.
IBM picked it up and cross-posted it on their Smarter Planet blog.

It was also in February that I decided to transfer my personal health data to Google Health. And, separately, became co-chair of the Society for Participatory Medicine.

In March I created a video for my hospital and got to know the eminent David Kibbe, whom I'd met at TEPR+. I also pushed the button in PatientSite to move my data into Google Health, and was a little stunned by the result. I could have flamed, but I'm not the flamer type, so it took me weeks to figure out what to say. And on the night of March 31 I started writing.

In April I finished that post, and all hell sorta broke loose. On April 13 it was in the Boston Globe, a week later was the "Health 2.0 meets Ix" conference in Boston with lots of publicity and people from DC. Met a ton of people there - it was bizarre and fun having my "celebrity moment" - people in the hall saying "omg you're e-Patient Dave!" :-)

In May and June I didn't say much here; I attended three policy meetings in DC, and that was an amazing experience. Met a slew of wonderful people there, too. I also got to meet famous author/analyst Clay Christensen, and recorded my first podcast, interviewing my surgeon with questions from other patients in my ACOR community.... well, enough - let's get on with it. It's been an ASTOUNDING year. Sign in! Say hi!

Sunday, December 20, 2009

Don't let the median scare you to death

Further to Friday's post Advice to a Cancer Patient Facing News He Didn't Want:

One powerful factor in my case was the education I got about not putting too much meaning on the probabilities I read. They may be accurate but they're not useful to focus on, except as a motivator to get it in gear.

Here's more background on that, for people with varying appetites for math. Note: This isn't anti-science blather; it's scientifically valid. But often clinicians are taught not to give people "false hope" i.e. that they shouldn't get your hopes up "unrealistically." I understand that - it must be horrible to face a bereaved family, crying "But you told us there was hope." But frightening odds don't mean there's no hope; in fact it's unrealistic to think there's no hope.

The first thing to understand is "median survival time." The classic article about this is "The Median Isn't the Message," by famed Harvard author Stephen Jay Gould. The median is the statistic that's most often published about cancer survival, but it's not the whole story. Here's why.

The median is the middle number in a study. It tells you nothing about the other numbers. The others could be the same or vary vastly.

Example: let's say a study starts with 25 people who have a given condition. When the middle one (#13) dies, that's the median. Did everyone else die the same day? Can't tell. Did the others get completely better? Can't tell. You can't tell your personal odds by looking at the median.

Why do scientists publish the median? Because that's the first statistic they finish. They won't know the average survival until the last person dies, which may be never. And they'll never know yours.

As Gould says, "the median isn't the message."
__________

And here's where the rubber meets the road: when you're in a crisis, the most important flaw of medians is that the median gives you no useful information about what to do.

So yes, the median can tell you how bad it might be, and that may motivate you to get your butt in gear to improve your odds. But it's not the whole story. Don't let it scare you to death.
__________

p.s Another copy of that article was posted on the CancerGuide web site, which was handed coded by one of the most senior of all e-patients, Steve Dunn - a kidney cancer patient who founded the "KIDNEY-ONC" kidney cancer community that I used so heavily, on ACOR.org.

In his "Cancer Guide" Steve assembled a phenomenal set of empowering teaching tools about statistics. They're listed in the side menu on that ugly old website :-). If you want, read it.

My approach to life

One of the pleasures of traveling to conferences, as I've done this past year, is meeting people "IRL" (in real life) whom I've only known online. One is Twitter buddy Steve Woodruff (@SWoodruff).

Today, with the big east coast snowstorm, he tweeted about this video - "19 seconds of pure joy." It's his year-old puppy's first snow play. As I watched (with joy), I realized it's pretty much my approach to life. :-)



If you can't see the video, click here.

And thanks to all of you who make it so!

Friday, December 18, 2009

Advice to a Cancer Patient Facing News He Didn't Want

Recently an online friend from long ago introduced me to someone who's got a cancer case that's not going well, looking for any advice and counsel. He wrote today to a big cc list, with unfavorable news (I'm obscuring all details), and I replied.

In the email he expressed understandable concern about the next treatment, discussed his physician's news about the odds, and said he doesn't want to disappoint anyone. This is my response.

Note: I'm not saying anyone should be like me, nor that I'd say this to any other individual. This is just my response to this one person. I'm posting because I hope it will be of use to someone else someday - perhaps light a candle of hope and determination in someone.

________________

K,

This is not the news we want, but since H. introduced us (as we're both cancer patients) and you cc'd me on this, I'll presume you want feedback and here it is.

(Folks, this will be long, and blunt, so feel free to ignore it.)

First, I feel for you. I faced imminent death (median survival 24 weeks) three years ago so I know what it feels like. For my disease the web sites said "almost all patients are incurable," "prognosis is grim," "outlook is bleak." And I have friends who are still going through this all the time. Visited one today.

And, here I am three years later - my doctor's main advice after this year's physical was back to normal: I should start losing weight, like any middle aged schlumpf.

Remember, probabilities apply to populations, not individuals. Nobody knows what will happen to you, and anyone who says otherwise is lying. Something like 1% of all cancers disappear spontaneously, and science has no answer for that. (And I say that being trained as a scientist - MIT graduate and all that.)

Wisecrack: "Statistically, the average person has one ovary." Absolutely accurate - but it tells you nothing about any individual.

Second, I know first hand that the only useful approach is to find out what's so, find out what your options are, and ask "What's next?" Anxiety is understandable but it's useless. You can unlearn it: it helps nothing, consumes your energy and psyche, and actually weakens your immune system. You may want to get some advice or coaching or therapy or whatever in things like mindfulness, relaxation, or even one of Bernie Siegel's Exceptional Cancer Patient retreats http://www.ecap-online.org/ecap-retreats. My family was going to send me there but I went into treatment first and got better. If I were in your shoes today, I'd do it in an instant.

Two books I like: There's No Place Like Hope and Anticancer: A New Way of Life by an MD who twice beat an unbeatable cancer (brain cancer!), despite his own oncologists telling him it wasn't likely. You wanna be like him?? Sounds good.

Honestly I'm not sure your doctor did you a favor by emphasizing the negative. He may feel an obligation to tell you the odds (some docs are trained that way), but did he also spell out everything you can possibly do to improve those odds? THAT's what deserves your attention. You're already well aware that you might die - okay, so now what are the ways you can reduce that chance?

I'm dead serious about that. Been there, and that's the approach I took.

For instance, what have you been doing to make yourself laugh? Laughter's been proven to be good for the immune system. I had my family send me the whole first season of Saturday Night Live on DVD, and every Bugs Bunny cartoon ever recorded. What makes YOU giggle yourself silly? Are you doing it? (Even if you're dying you can have fun in the process!)

And just to be clear - if you die you won't "disappoint" anyone. Do NOT get into a head game of feeling guilty about having cancer! For heaven's sake. I think you need to get in touch with what YOU CARE ABOUT: say "I will never give up, because I care too much about all of you to say goodbye before I absolutely have to!" THAT is a reason to survive - not to "avoid being a disappointment."

You need to get in touch with why you WANT to be alive, and then do something about it. Even if the odds are bad, like mine were.

You might not survive. So get it in gear, if you want to.

I look forward to hearing YOU talk like this to someone a couple of years from now. :)

____

Addendum Dec. 21: see also "Don't Let the Median Scare You to Death"
____

Addendum Feb. 16: for a start, see Tim Conway's "Dentist" clip here. You might want to visit the bahthroom first.

Wednesday, December 9, 2009

What a headline to have in one's scrapbook

This is the start of an item in today's Manchester Union Leader.


Yes, that's Dean Kamen, inventor of the Segway scooter. He's also the inventor of many medical devices that are making life better for a lot of people.  And he and I are two of the "HealthLeaders 20" this year - "20 People Who Make Healthcare Better." My doctor Danny Sands, is another. We're there because of the Society for Participatory Medicine.

On my  business website I acknowledge some of the many people who are making this happen:
Making Healthcare Better through Participatory Medicine

Thanks to friend John Peterson for letting me know about this in the Union Leader.

Saturday, November 28, 2009

How to evaluate something like the mammography recommendations

This is a long post because it's not a simple topic. Please don't jump to conclusions.

On the e-patients blog, Gilles Frydman, founder of ACOR, has written one of his potent deep-thinking posts. This time he reflects on how we (humanity) tend to get ourselves in trouble when we frame our thinking in terms of "war on..." It doesn't matter whether it's a skillful manipulation ("war on terror" / "Iraq - 9/11") or unintentional; fear comes from the more primal parts of the brain and can prevent that distinctly human skill, thinking.

This is adapted from a comment I posted.

--------

Before I start, let me say that I have not evaluated or even read the task force's recommendations. The instant I heard the public reaction I knew there was craziness in the air: insanity, reactions to things that weren't being said, hysteria. And I knew what I'd write about wouldn't be a thumbs-up-orodown post, but how to approach such a consideration as an informed, engaged e-patient.

What does this have to do with being an e-patient? Everything. It's increasingly clear that we can't rely on the establishment (political leaders and news media) to interpret science correctly. Gilles lays out the evidence for that well. We must learn to interpret evidence for ourselves.

_________________

1: The purpose of using statistics

Gilles, thanks for tying this to our previous posts on understanding statistics. PLEASE, people, read last November's short post on understanding statistics. And consider reading the excellent paper it links to.

Look at its incredible evidence that even physicians misinterpret statistics - the example on the second page is specifically about gynecologists being unable to correctly interpret mammography data, unless it's presented quite clearly. The point isn't that docs are dumb, it's that misinterpreted statistics lead to confused, botched conclusions.

See, the purpose of statistics is to improve our guesses when we don't have certainty. Use the tool correctly and it'll help; use it wrong and it'll drive you right off the road into a ditch.

Another example in that article is Rudy Giuliani's ignorant, erroneous comparison of apples-and-oranges prostate screening data from the US and UK - data collected under different circumstances in different environments at different times in life. The reality is that prostate mortality is the same in the two countries, but Giuliani's bogus logic led him to declare that the US healthcare system works better than the UK's.

Right: same mortality rate, but pick some arbitrary statistic and claim that it shows there's a difference, even when the actual mortality rate is the same. Brilliant civic leadership.

REMEMBER, PEOPLE, THE PURPOSE OF STATISTICS IS TO IMPROVE OUR GUESSES. Actual outcomes outweigh interim statistics!

(Not to be outdone, in the UK, Tony Blair declared that his country was doing poorly and must improve 20%.)

STOP BEING IGNORANT. Don't use a tool if you don't know what it's for!

In my annual physical today, Dr. Danny Sands and I again discussed whether I should get a PSA test (prostate cancer test). He first brought it up three years ago, and he (unlike many physicians) made clear that the PSA is notoriously unreliable: many false negatives, and many false positives that lead to unnecessary treatment. That's the kind of advice I like: give me straight-up information about the pros and cons, and let me choose.

_________________

2: Every choice in life has risks.
You cannot evaluate doing something without also evaluating not doing it, and comparing.

See, as with the prostate example, there are risks to screening and risks to not screening.

Many articles have discussed that screening tests (a) cost money, (b) can lead to unnecessary treatment because of false positives, which (c) cost more money and (d) can cause harm.

It's exactly the same as the UK birth control issue. The erroneous public reaction was caused by evaluating one arm of the choice and not comparing it with the other. Result: greater risk of clotting: a botched conclusion with medical consequences. You could call it statistical malpractice.

Just SHUT UP if you want to tell me "Don't take away my tests!!" I didn't say that. Don't be insane, hearing things I didn't say. That's hysteria.

I'm not talking about the conclusion, I'm talking about how to make intelligent choices.

_________________

3. Who gets hurt? The patient.

In a comment on Gary Schwitzer's excellent blog, I said what really upsets me in the mammography insanity is that (ironically!) it's women who are put at increased risk by these misinterpretations: women who are left with less accurate advice.

In a similar way, the first case in that paper is about a 1995 UK scare caused by news that new birth control pills were causing a 100% increase in blood clots. True – but the reality was that they produce 2 clots per thousand women, vs. 1 for the old pills. Literally a one-in-a-thousand difference. But oh wow, that's 100%! Headlines!

Here's the consequence: Because of ignorant misinterpretation, massive numbers of women went off the pill, and in the following year ...
  • 13,000 more abortions were done in England and Wales
  • 13,000 more births, including 800 under age 16
The special irony is that both abortion and pregnancy have higher rates of clotting than the pill itself. So the whole ignorant diversion was not only ill-considered, it worsened women's health (while increasing abortions and births).

Doesn't it irk you that the righteous protests about protecting women's health, ignorantly considered, lead to bad advice?? These errors in interpreting science harm people.


_________________

4. The idiocy of asking celebrities their opinions

Whatever credibility our network news media had with me, they lost it when they trotted out ignorant celebrities to contribute to the misinformation campaign.

A new blog, the oddly named Celebrity Diagnosis, has chosen the mission of talking about health issues through the lens of celebrity discussions. They cite how dumb celebrities have been on this topic, particularly Jaclyn Smith saying "They want to abandon proven therapies. It's wrong."

Excuse me? Since when is a test a therapy? Jaclyn, is checking your pants the same as laundering them? Maybe that's over your head. So shut the hell up on medical advice, willya?

But that's what Gilles is talking about when he cites moral panic, which the Center for Media Literacy defines as "A sudden increase in public perception of the possible threat to societal values and interests because of exposure to media texts."

And what better way to drive people to panic than fear of death?

But hold on; I've been there. Let's think.

_________________

5: On the fear of cancer and death

When I learned on 1/22/07 that my median survival time was 24 weeks, it was NOT pleasant for me. "No. I am not done. Not ready to go."

But after the abrupt shock, I found myself able to look it in the eye and think. What are my choices? Where do I start?

Twenty years ago I listened to tapes titled "Conscious Aging" and "Approaching Death" by Ram Dass, a spiritual teacher who was born Richard Alpert and who, in the sixties, wrote Be Here Now. After years in Tibet with gurus he worked with many dying people during the AIDS epidemic. (I've seen him speak, and believe me, when he entered the large hall, some sort of presence filled the room. Never seen anything like it.)

He speaks of death matter-of-factly, and his perspective aided my acceptance of what I was abruptly facing. I wasn't interested in going through that door, but after a while I realized that if that's what was happening, I could face it.

And that freed me to have authentic conversations with people about it, and with myself: I was able to choose my path with a clear mind.

I don't diminish the concerns of people who face cancer and/or death - everyone's trip is different. But throughout my cancer journal on CaringBridge.org I talked about the power of the words and concepts we use in discussing our world. I opted not to engage in discussion of "OMG!" and "How terrible!" I chose to think about "What are my options? What could be done that would make any difference?"

If we could all face death calmly I bet we'd be able to make much better choices in how we interpret evidence.

_________________

6: Think.

That's why hysteria (Wikipedia: "unmanageable fear or emotional excess") is so very, very harmful. When people lose their minds, perhaps because they're told foolish misinterpretations of the evidence, what are the odds of reaching a sane conclusion?

Oh wait: we don't have to ask the odds. This time we know.

Well done, Gilles. Obviously you touched a nerve.

Thursday, November 26, 2009

Engage with Grace: The "One Slide" Project

Last Thanksgiving weekend, many of us bloggers participated in the first documented “blog rally” to promote Engage With Grace – a movement aimed at having all of us understand and communicate our end-of-life wishes. As someone who faced the thought of death not that long ago, this touched me, and I participated. Have you thought about it?

It was a great success, with over 100 bloggers in the healthcare space and beyond participating and spreading the word. It was intentionally timed to coincide with a weekend when most of us are with the very people with whom we should be having these important conversations – our closest friends and family.

Our original mission – to get more and more people talking about their end of life wishes – hasn’t changed. But it’s been quite a year – so the organizers thought that this holiday we’d try something different.

A bit of levity.

At the heart of Engage With Grace are five questions designed to get the conversation started. We’ve included them at the end of this post.To help ease us into them, and in the spirit of the season, we thought we’d start with five parallel questions that ARE pretty easy to answer:


Silly? Maybe. But it underscores how having a template like this – just five questions in plain, simple language – can deflate some of the complexity, formality and even misnomers that have sometimes surrounded the end-of-life discussion.

So with that, we’ve included the five questions from Engage With Grace below. Think about them, document them, share them.


Over the past year there’s been a lot of discussion around end of life. And we’ve been fortunate to hear a lot of the more uplifting stories, as folks have used these five questions to initiate the conversation.

One man shared how surprised he was to learn that his wife’s preferences were not what he expected. Befitting this holiday, The One Slide now stands sentry on their fridge.

Wishing you and yours a holiday that’s fulfilling in all the right ways.

To learn more please go to www.engagewithgrace.org. This post was written by Alexandra Drane and the Engage With Grace team. If you want to reproduce this post on your blog (or anywhere) please write to me and I'll send you the HTML.

Saturday, November 21, 2009

"Who Says I Can't?" Jothy Rosenberg's incredible story

During my illness three years ago people said my attitude was incredible, and my gut says yeah, it played a role in my total recovery against nasty odds. The first paragraph of my CaringBridge journal ended saying we'll "do everything we can to maximize my chances. Top of the list: a strong mental attitude and a clear mind!"

Thanks to online Connecticut friend Kathleen Tinkel, I just discovered a guy who takes "attitude" to a new level of inspiration: Jothy Rosenberg. 37 years ago he lost a leg to osteosarcoma, which spread 3 years later to his lungs; he lost 40% of them. Well, check this out:


He's ridden the 192 mile Pan Mass Challenge bike ride seven times, and has swum from Alcatraz to San Francisco 16 times. With one lung and one leg.

Why? He writes, "To get through life at all I desperately needed to find a way to regain a sense of self-confidence. I did that through athletics."

He's written a book, launching Dec. 16, titled, aptly enough, "Who Says I Can't?" His story's on his blog here, and the book's Facebook page is here.

I gotta meet him....

Update March 17, 2010: Jothy is currrently planning his next Alcatraz swim. Go donate. I did.

His website/blog: http://www.whosaysicant.org/
Twitter: http://twitter.com/Jothmeister
Facebook fan page: http://www.facebook.com/whosaysicant
His book, "Who Says I Can't?" http://www.whosaysicant.net/

Monday, November 9, 2009

How can public media help healthcare?

Time for a quick crowdsourcing exercise.

In a few hours Lee Aase of Mayo Clinic (Twitter: @LeeAase) and I will be in a workshop on how public media can help with public health. We'd like your thoughts.

The workshop is at the Paley Center for the Media in Manhattan (they also have a branch in LA), and is funded by a small grant from the Ford Foundation. The issue is to consider, in this time of great pressure for healthcare and significant change as the media world goes digital and social, how public media can help.

Excerpt from the invitation letter (emphasis added):
_____

Research shows that one of the major contributors to health inequities and poor health is insufficient access to health-related information. ...[a panel] concluded that “[i]ntransigent and growing health inequities call for new thinking about the role of public health in creating the conditions in which all people can be healthy.” Among many recommendations, the Panel called for new community partnerships that would increase access to health information and community health-related outreach.

...

This workshop will look at some critical questions that have far-reaching implications for the health care industry, general public, policymakers, private media, and public media.

  • Where does the market fail in reporting on health-related problems and solutions and how can public media fill this gap? [market=normal commercial business processes]

  • What role should different public media institutions, including social media and applications, play in health reporting?

  • What is the proper role of public media in serving as a platform and clearinghouse for health-related information and data?

  • What are public media’s special competencies, potential contributions, in health outreach (informational and other)?

  • What structural changes are necessary in terms of technology (e.g., bandwidth), partnerships, funding to enable public media entities to play a more productive role in the dissemination, collection, and creation of health information?

Your thoughts on any of those will be appreciated!

Tuesday, October 27, 2009

My talk at e-Patient Connections 2009

e-Patient Connections 2009 is a new event in an already-crowded fall season on the healthcare conference circuit. I had already attended Medicine 2.0 in Toronto, Health 2.0 in San Francisco and Connected Health in Boston. So not only did I wonder "Who needs another conference," I wondered seriously about taking more time away from my office at TimeTrade Appointment Systems.

But I decided this one is different: it's a marketing conference (about marketing to patients), and being a marketer and a patient, I decided this would be a place to share my views of how healthcare is changing - patient engagement - in a different context, so I accepted.

Everyone's time slot was half my usual, and it's a puzzle trying to figure out what to say to a new audience. (That's no problem for speakers who say the same thing to everyone including their dry cleaner, but I have this fixation with saying something this audience might find useful.) (I like to get invited back, so it's a good thing when the audience finds value.)

I decided to present my thoughts in the context of one of my favorite topics: authenticity.

(These are just slides - no audio.)


By the way, thanks to Slideboom.com for having the only slide-sharing service I know of that properly handles my complex animations. They're good. I don't know why people keep using services that don't work right.

Friday, October 16, 2009

A quote I won't soon forget

A note I posted last night on the e-patient blog

Marcia Angell MD is a well-known, respected physician, long-time editor of NEJM. So it was a bit of a shock today when Amy Romano, blogger for Lamaze International, sent me this quote:

It is simply no longer possible to believe much of the clinical research that is published, or to rely on the judgment of trusted physicians or authoritative medical guidelines. I take no pleasure in this conclusion, which I reached slowly and reluctantly over my two decades as an editor of The New England Journal of Medicine.
From Drug Companies & Doctors: A Story of Corruption in The New York Review of Books, around New Year's.

Dana Blankenhorn of the ZDNet health blog called it "a bombshell." I couldn't agree more. And I must say, with all the smart people in this community, why on earth haven't we heard more about this??

And how on earth are we supposed to be empowered participatory patients if we can't trust the world's leading journal?

For one thing, we can have our eyes wide open about the evidence we're supposed to trust. Get educated. Learn how to read health news reportingincluding the journals. Wise up.

Think critically. It's a fundamental part of being an empowered patient.

____

That's what I posted last night. Then, this morning this happened:

Next week at the Connected Health conference in Boston, we're launching the new Journal of Participatory Medicine. The editorial and advisory boards include some people who, I'm told, have seriously good reputations in medicine, including Richard Smith, 25 year editor of the prestigious British Medical Journal. Unbeknownst to me, he's got a piece in the first edition that mirrors the above. So today, our person who tweets for the Journal, @JourPM, added these notes:

"R.Smith (BMJ) concurs w/M.Angell (NEJM) in launch of J. Partic Med: 'most of what appears in peer reviewed journals is scientifically weak'"

"Peer review must be job of the many rather than the few. This must, indeed, be part of participatory medicine's philosophy. R. Smith"

The first edition of the Journal will go live (online) next week. Subscribe/register (free, open access) here.

_____

Related reading:

No *other* conflict of interest, huh? (11/08)

Negative data on Seroquel suppressed by manufacturer (2/09)

Dr. Reuben deeply regrets that this happened (3/09)

Wednesday, October 14, 2009

Interview at Health 2.0 in San Francisco October 7

The Health 2.0 conference in San Francisco was a tremendous success in a lot of ways. I made some great business contacts, heard some stimulating conversations on stage, and some very stimulating conversations off stage.

ICYou is the video company that recorded the presentations. In their booth they also recorded informal interviews with people. Here's mine. (It doesn't have a preview image for some reason; just click it.)


Wednesday, October 7, 2009

To Have and Have Not, part 2

The other day I wrote about Fred Holliday. He had clearly troubling symptoms, was unable to get good care due to insurance issues, and is dead. I had the same disease, without symptoms, and it got caught during routine checks.

It hasn't stopped and it won't stop. A week ago I went to a dermatologist because of an itchy thing on my forehead that hadn't gone away for months. It was a pre-cancerous sun-related lesion, which would have become cancer. Caught early, it was frozen off in a one minute treatment that didn't even require Novocaine. I'm left with a spot on my forehead, which they say will be gone in a few weeks.


And every time I see it I think of Fred.
______________

People argue about what reform is. To me there's nothing more fundamental than the simple question of whether people can or cannot get care, which among other things means taking care of little problems before they become big problems.

The simple question of "can or cannot get care" is such a fine line, like a razor's edge that makes all the difference in the world: if you can get care, your outcomes can be more or less like mine; if you can't, like Fred and his family, nature will take its course. You are on your own to battle it.

Fred was one of the tens of millions for whom the answer was "No." He's dead at 39, leaving a widow with a 3 year old and an 11 year old who's high-functioning autistic. And that sucks. It's a disgrace.

There are lives at stake in this issue, people. This stuff matters. We can do better.

Tuesday, October 6, 2009

The Razor's Edge: To Have and Have Not

This is perhaps the most difficult thing I've written about, because in it I confront the reality that when it comes to healthcare, I am a Have, and someone quite like me was a Have Not. I am alive because I'm a Have, and he's dead because he was a Have Not. And I despair that America allows so many citizens to be Have Nots.

(Don't think this is a "liberal guilt" post; there's no guilt here. I got good treatment, as I should. This is about something else.)

In December 2006 I had an annual physical, which led to a shoulder x-ray that incidentally discovered a surprise tumor: kidney cancer that had spread. That x-ray saved my life, because I was near the end, even though I had no particular symptoms.

Two years later Fred Holliday entered the hospital. He'd had symptoms for a year - night sweats, fatigue, bloody urine - but his health insurance was inadequate to make tests affordable; they didn't bite the bullet until it was too late. It took months to get a diagnosis of kidney cancer (like mine) after weekly tips to the primary care doctor and two ER visits. After hospitalization, it took months to receive treatment.

For him it was too late: he's dead now.

Fred couldn't afford to get tests for his plainly evident symptoms, and it cost him his life. I had the same disease without symptoms, and it was found because I could afford to get checkups. And I'm alive today as a result.

Healthcare Haves and Have Nots:
It's a nasty reality that's got to change.


Lack of coverage costs people their lives, costs families their spouse, costs children their mother or father. We can do better than this.

And it doesn't stop here - the story continues. More in the next post.

Sunday, October 4, 2009

Why it's taking so long for me to write about Innovator's Prescription

In a comment on my Verizon Wireless post the other day, someone asked if I'm going to write more about The Innovator's Prescription, the book that's been sitting in my "Currently Reading" widget since June. Since I just pulled it out to continue, this is a good time to fess up to what's going on.

This book is breaking my head, in good ways. It's taking me a long time to think about all of its insights, assimilate them, and let them filter down into the nooks and crannies of my thinking about healthcare.

As one indication, here's a snapshot (courtesy of my webcam, as I sit on this Virgin America flight to a conference in San Francisco) of a two-page spread of the book. Now, I don't usually make this many marks in a book when I read it; I only mark up things I really want to remember, really want to come back and study again. But this single two-page spread has many underlines, circles, margin notes and highlights.

This book is dense, and I mean its information content, not its writing style. And what the authors say about healthcare delivery systems - and how industries evolve - is resonating with my experience both as a patient and as someone who's watched industries evolve, from inside and out, for decades.

Two weeks from now I'm speaking at a conference in Philadelphia with Jason Hwang, co-author of the book, so I want to get it wrapped up by then. (He's the opening keynote; I speak that afternoon.) But just to give a hint of how much juice there is in this book, here are some notes I've scribbled on the inside cover about potential blog posts:

  • The three approaches to achieving data interoperability (p. 138)
  • Toyota's approach to the "right data in the right place at the right time" problem (p. 138)
  • Our health data must be open, not held hostage - vendors must learn to make money by adding value not locking up our data in their private vault (p. 142)
  • As the data become commoditized (not locked up), the software tools that add value will become decommoditized, and this is where new vendors will make money... as old-wave vendors will suffocate. (p. 142)
  • 3/4 of our direct healthcare costs are related to chronic disease, not acute illness. Any approach that doesn't address this can only dent the surface. (p. 150)
  • Their study across industries over the years has shown that the improvements brought about by disruption require new business models too, not just new technology. The business model (the cost structure!) of physicians and hospitals is appropriate for acute illness (relatively brief time from diagnosis to cure or death) and isn't viable for conditions that last for years. (p. 150)
  • The importance of finding why a pattern happens - the underlying mechanism that explains our observations and predicts what's likely next. (p. 151)
Each of those points is important enough that I'd be willing to write a post about it or give a whole speech about it. And that's in a 13 page segment... of which pp 143-148 are a chapter's endnotes.

Mind you, I have some concerns about limitations of their view, but before I spout about that, I want to have finished it!

Look, this is an important book. It's not political; these guys are trying to drum into our skulls that they've found something that's important to understand.

I know not all great healthcare minds agree with their prescription, and only time will tell whether they nailed it. But if I had a half million to invest, I'd be avidly sizing up my options in light of the Christensen/Hwang framework.

It's entirely readable (no geek credentials required, no HITSP ARRA alphabet soup). There is no magic to this. Be old-fashioned: read a book, and understand it for yourself. :-)

Saturday, October 3, 2009

Many goings-on ... an update

This is an update for friends who don't hang out routinely in the world of healthcare transformation, where I'm spending more and more of my time. For those who do, there's nothin' to see here, so just move along. :-)

The Society for Participatory Medicine is gathering steam. I would love it if you join; it's only $30 (yes $30 to join a medical society), and yes everyone is welcome (that's the whole point of participation), and if you want to join but $30 is hard right now, you can have a scholarship. Free. So just go join. Thank you.

Its new Journal of Participatory Medicine (free, online) is launching at the Connected Health conference in Boston, Oct. 21-22. My doctor and I are speaking on the 22d. Twitter uses can follow the Journal at @JourPM.

In the run-up to the launch, as chief blogger on e-patients.net, I'm organizing a series of blog posts on "Why PM?" (participatory medicine). (Twitter users, this series is hashtag #WhyPM.) Posts in this series:

  • 9/21: Give patients (that’s you) access to all their (your) data – so they can help - a comment on my keynote speech at the Medicine 2.0 conference in Toronto 9/17. We hope to have video of the speech available soon, but not yet.

  • 9/26: Participatory Medicine Around the World: the Seven Preliminary Conclusions reach India - a physician in India discovered the e-patient blog and agrees with our principles

  • 9/27: What Participatory Medicine can learn from a $2,467 phone bill - as I originally noted on this blog, when I went to Toronto there was a bit of a mishap on my Verizon Wireless bill. How it happened - and what they did to fix it - contain valuable lessons as healthcare looks as adopting better practices for good quality data.

  • 9/28: Social media and Healthcare: Hospitals Lead. One of the great gurus of social media, Rohit Bhargava (of Ogilvy's online division), wrote that hospitals are starting to adopt social media. I commented, "A signal moment has happened: When a major business authority with no history in healthcare speaks up about a shift in the wind, it’s worth noting..." And, terrifically, Rohit responded by looking into the Participatory Medicine concept, and tweeted "love the concept of participatory medicine" and he started following @JourPM on Twitter. That is cool. And important.

  • 9/29: Journal of Participatory Medicine and e-Patients. In Toronto I met up with John Sharp of the Cleveland Clinic. (That's the place that's often cited as a model of modern approaches to healthcare.) He's entirely "boarded the boat" about patient empowerment; his guest post for us starts "If you have not read the e-Patient White Paper, you do not understand the future of medicine."

  • 9/30: A Lifetime of Participatory Medicine Can Start With Maternity Care. The PM movement has been discovered by Lamaze International. I was thrilled when their blogger Amy Romano contacted us, because for the first time it brings a non-disease community into the e-patient community. And, Amy's a heck of a writer, as shown by this guest post on our blog.

  • 10/1: Participation Matters by Susannah Fox of the Pew Internet & American Life Project. Pew doesn't advocate on any issue; Susannah simply documents what Americans are and aren't doing. Significantly in this post, she reports that 42% of adults say they know someone who's been helped by medical info they found on the internet, up substantially from 2006; and only 3% know someone who they say was harmed, same as 2006.

  • 10/2 - and this is the astounding one: “Doctors Are Killing Their Profession, the Healthcare System and Their Patients with Paternalism”. Those strong words come from a board certified neurosurgeon who describes, on his blog, what paternalism in medicine looks like, and the harm it's doing. (He saw my presentation in Toronto and mentions it.) Significantly, he also describes how many doctors have been taught to think that way: "Your patients don't want to know the details, they just want to get well. It's your responsibility to shoulder the burden." Clearly undoing that training is a big part of what the Society hopes to achieve.
I've also continued working half-time at TimeTrade Appointment Systems, while starting my healthcare consulting business ePatientDave.com: So yeah, it's been busy!

Next up, flying tomorrow to San Francisco for two events, HealthCamp SFBay and then on a panel at Health 2.0. Friday 10/9 I'm attending a patient safety event in Boston.

Then, the following weekend, Sunday night 10/11, we go to beautiful Ogunquit, Maine, to hear the phenomenal Suede, in her first New England appearance in a year! If you're in this area, get reservations and join us!

Saturday, September 26, 2009

Don't I just LOVE totally screwed-up data. (But check how they dealt with it.)

I often say that I like "Good quality data, well managed." And I talk about the importance of having good reliable processes to ensure reliable data. And I talk about how most industries got this sorted out decades ago.

Well, sometimes things go a little haywire. Here's the email I got last night from Verizon Wireless.



Hm, it seems that when I went to Canada for the Medicine 2.0 conference last week, and adjusted my Blackberry data plan to include Canada, something Did Not Go So Well.

Me being me, I'd done quite a bit of research into my options before the trip. (I have this thing about people knowing what their options are, and being actively engaged to find out.) At the time, the Verizon agent I spoke with said that my data charge would be 0.02 cents per KB. I said "So that means 50k would be one cent, and 1 MB would be 20c." She said "Right."

Well, not so much. Their fraud prevention department called while I was in Canada, because my data bill was going through the roof. "No," they said, "that was 0.02 dollars per KB."

Evidently the original agent didn't know "$0.02 per kb" is point zero two dollars which is two cents. And when I did the math for her, concluding "1MB = 20 cents," she said yes; it was evidently over her head.

So when fraud called I popped my cork. But they said "No problem, we're setting it to the other plan, retroactively." So the bill would be just fine.

Well, apparently everyone got the word except the billing computer, which just sent me a bill for two grand.

When I got the email I called customer service and they hopped right on it. They said it'll take a few days to sort it out but they said the conversations are all recorded in the system and they'll work it out. I asked the agent to send me an email confirming that we'd talked. He said he would. He didn't. I called today and repeated the request. This time she sent one.

============

What can we learn from this? It's not just that companies make mistakes; there are important differences in what happens when there is a mistake. Although errors occurred in Verizon's work (twice), they had checks and balances and processes for correction:
  1. The fraud department detected abnormal values and jumped into action. In fact they called me while I was in Canada to say that the amount was crazy-looking.
  2. They didn't make me wrong about it. Too often a company will say it's the customer's responsibility. Those companies don't win my loyaty.
  3. The people who called were empowered (authorized) to fix the problem. There was no "there's nothing I can do," no "I'll have to speak to a supervisor."
  4. Our conversations were noted in the system so subsequent workers knew what happened.
  5. They sent me the bill amount by email, so I quickly spotted the problem. (I confess that I don't immediately open every bill that arrives, especially if it's one that rarely changes.)
  6. They had customer service people available 24/7. This enables following up on a problem when my schedule allows it.
This is a great model for healthcare providers who are considering improving their processes for detecting and correcting errors in data.

At the same time, note the steps I took as an empowered / engaged / activated consumer:
  1. I researched my options. We as patients can and should do the same. Don't expect your physicians to think everything out for you; get engaged, be responsible.
  2. When I did spot the problem, I called immediately. The sooner you react, the better.
  3. I didn't blame the person I got on the phone. He had nothing to do with the error. (But I did expect him to fix it.)
  4. I described what happened, and ended with "So: what do we do to get this straightened out?" I find that this question puts the power in their lap, where it belongs, and hints that they look up how to solve it (if they don't know). And, the "we" says I know I might need to do something too.
  5. Followed up. When the email didn't arrive overnight, I called back and firmly said what I want.
The takeaway for empowered patients and people improving healthcare:
  • "Good quality data, well managed" doesn't automatically happen; keep an eye out.
  • It can get screwed up several ways, both human and systemic. That's why we need sanity checks and processes to resolve problems.
  • Learn from other industries. There's no reason on earth why healthcare providers can't use the same processes as Verizon Wireless. (It's not like they'd have to invent them - the processes exist.)
  • Expect competence in your data providers.
  • Be responsible: do your own sanity checks. You may not want to micro-check each detail, but never ever presume that anyone is perfect - especially not in healthcare, where errors are common and systematic sanity checks are too rare.
  • Expect corrections. The healthcare industry is immature in this area: from what I hear, it's common for patients to find that a hospital or physician doesn't want to correct errors in your record. Demand it.

Sunday, September 13, 2009

Healthcare protest video: "We're #37"

About time somebody did this:



I usually give people the benefit of the doubt on differing opinions, but lately I increasingly wonder what the people who oppose change are thinking.

Friday, September 11, 2009

My route for Sunday's ride

Well, how cool is this? I just found out about this nifty map of my route:



What I didn't know about is that the ride, which I'd heard about as "a bit hillier" than "flat", starts with a 70' climb in the first two miles. Here's what that looks on on the "View Elevation" link in the map above: (click to enlarge)


At first I thought "Hm, I don't know what that'll be like." But I live on top of a pretty big hill, and I've never known how tall, but the other day I did ride up it, non-stop. So I just went over to Google Earth and checked - it's 35 meters (114 feet) in less than 1/2 mile. So I guess 70' in 2 miles won't be a problem. :&ndash)

COOL! (If you haven't yet, you can donate here. Thanks!

(btw, yeah, I used low gear for most of that hill...)

Wednesday, September 9, 2009

Help create my talk at Medicine 2.0 in Toronto: "Gimme my damn data"

Yes, that's the title of my talk to open the Medicine 2.0 Congress in Toronto next week. Yes, it's the published, advertised title. I believe patients should have complete access to their health data.

Whose data is it, anyway? I said that in May (in my post on "meaningful use"), I was one of the first to endorse the Declaration of Health Data Rights in June, and it was the crux of an ad hoc talk I gave in Washington in June.

But we certainly aren't there yet. Please help me create my talk. What would you want to discuss in Q&A?

Last night I tweeted:

I intend to make a forceful case for it, and I'm not aiming to preach to the converted.

So the question will be, what could I say that could make any difference - move the unmoved?

I have no interest in polarization; my schtick is to move people's point of view.
A side note -

This will be my first-ever keynote to open a conference. Many thanks to Gunther Eysenbach for inviting me. Gunther is the man who, years ago, did the original study that failed to find any cases of "death by googling," an evidence-based finding that opened the door to patient engagement. Today he is publisher of the Journal of Medical Internet Research.

So, here's my question: What could be my "call to action" as the conference starts? (The full conference program is here.)

See, my secret for mid-conference talks is to "listen to the room" and see what needs to be said. But when you're the first guy out of the box you can't do that. :)

Tuesday, September 8, 2009

For HR professionals: Prepare for increased affirmative action audits

This is a non-medical moment here. I'm demonstrating to my friend David Kourtz, an extremely savvy HR guy, how to grab a thought out of his copious thought-o-sphere and turn it into a tweetable blog post.

We're sitting at Panera and he said:

"The OFCCP has had a significant increase in the number of investigators hired this fiscal year. That will result in many more companies' affirmative action plan being audited as the new active investigators come online."

I have to say, this is not the kind of thing that would have drawn MY attention. But that's the power of a good social network - online as well as off.

David knows this stuff inside out. Contact him at dave.kourtz (at) hr-roi (dot) com.

Launching my new business and its web site

Some of you know that I'm now working part time at TimeTrade Appointment Systems. I'm taking the plunge, starting my much-anticipated business as a consultant and analyst in the new world that people are calling "health 2.0," "e-health," patient empowerment, patient engagement - all of that.

It's terrifying and a thrill. I've been working with some generous friends and advisors to work out the message I want to convey to the people who we think should contract with me. Some delicious opportunities are already in the works, but no chickens are counted until they hatch.

The new website is at www.ePatientDave.com. Send clients!

Friday, September 4, 2009

For the first time in my life - I'm a bike riding fundraiser!

See updates at end and in comments.

We've all heard of personal transformations after a health crisis, but this one's a little abnormal: I have become a bike rider! For the first time in my life! (Well, since high school.) Donate now, or read on:

In June, with no "should" attached, I told my wife "I want to start riding a bike." I got myself a yard sale bike and started riding it, and I liked it.

  • I bought some pimpy gadgets for the bike. Nothing major, but yeah, I pimped my yard sale bike. I liked it more.
  • I found a really nice big park in my town, a riverside park I'd never known was there. I rode through it end to end until it wasn't big enough.
  • I had a concern about discomfort in my arm so I checked with my orthopedist. (It had hosted a metastasis during my illness.) A-OK.
  • I rode the park's trail extensions to downtown Nashua till that wasn't enough.
  • I learned there's a 12 mile "rail trail" from Nashua to Ayer, MA, and I loved it.
  • 12 days ago I rode it all the way, back most of the way twice - 30 miles total. First time in my life I've ridden 30 miles.
So I went home and opened the email where... my orthopedist Dr. Anderson had invited me to join HER in a fundraiser bike ride for the hospital's cancer research - and I registered!

So now it's your turn: you get to donate! To my very first cancer fundraiser!

Click here. And thanks!

Update 9/5: This is good for the soul, too: here's a photo I snapped today on my training ride, from an overlook above Fresh Pond in Cambridge:


  • You guys are awesome – you've already made me the #10 fundraiser in the whole event. This is SUCH an excellent way to thank my hospital. And extra thanks to friend Harry Zane, who's joined the team and will ride too!

  • Today I rode the Minuteman Bikeway rail trail from Bedford MA all the way to Alewife Station on the Boston "T" subway line, then continued to Fresh Pond - a 25 mile round trip. This is so unlike me - except now it's not! Thanks for your support.
Update evening 9/7:
  • Today I did another 22 mile ride on the Nashua River Rail Trail. I "PR'd," as athletes say - beat my own Personal Record, doing the distance in 1:54, vs the 2:12 it took me to do that distance a couple of weeks ago.

  • Your donations have raised me to #7 in the event's list of top fundraisers. Thank you!
Updates continue in the comments.

Tuesday, September 1, 2009

BIDMC's Dr. David McDermott on MDX-1106 (experimental treatment)

This is the next in a series of podcasts on treatments for kidney cancer, interviews with members of my care team at Boston's Beth Israel Deaconess Medical Center.

Today's podcast arose from a discussion on my ACOR kidney cancer patient community. As I've said many times, in today's e-enabled world, it's no longer rare for patient communities to learn about (and start talking about) new treatments long before your everyday physician hears about them. This is such a case: a patient at my hospital spoke up about this new treatment on the ACOR kidney cancer list, and questions arose. Our physician, Dr. McDermott, was kind enough to take time to record this interview.



For patients who are looking for these treatments, here are links to the relevant pages on my hospital's web site:
_____

Here's a link to all my podcast posts.

Sunday, August 30, 2009

The Business Model of Health Care

Twitter friend @StaticNrg, a highly empowered Cushing's Syndrome e-patient, sent an article that ends thus:


Conclusion

Our society has decided that provision of certain services is best left to the government and out of the marketplace. It is ridiculous to think of multiple water systems, for example, competing to bring drinking water to individual households. It is equally unthinkable to subject fire departments to the economic dictates of competition: we certainly do not want fire chiefs to be creating more demand for their work. We do not choose to divvy up national defense between competing suppliers of armed services, for obvious reasons. Alternatives to these types of public services just do not fit into the corporate model that works so well for consumer goods and services. They are either too expensive, lacking in overall benefit to the entire populace, or just plain too chaotic.

Should health care be any different? Do we want the consumer-driven marketplace to rule in such a way that untrained, vulnerable individuals can order for themselves expensive medical tests that have no proven benefit and may carry incalculable opportunity costs? Do we want entrepreneurial efforts to increase consumption of highly profitable drugs, regardless of cost and any consideration of what might be best for medical care? Do we want a system that rewards the creation of expensive and profitable services, such as NICUs, without consideration of need? Do we want to continue to witness the compromise of the integrity of basic medical research in the name of profit?

As these questions are framed, the answers are obvious. Clearly, it is necessary to overhaul our health care system so that decisions are made to improve health, not the bottom lines of corporate enterprises. Current issues in health care that politicians debate (universal health insurance, medical malpractice reform, a drug benefit for senior citizens) are important, but dealing with them will constitute mere tinkering with a system that needs more than a patch here and a stitch there. Rather, fundamental assumptions about medicine’s role in our society need to be considered. It is a wonder that we allow such a flawed system to persist. It a greater wonder that the basic question of what health care should be, a business or a social service, is not even on the national agenda.

I thought "MAN that makes sense! Who brought this into our discourse?? I sure hope people listen!"

Then I saw the publication info:
James P. Whalen is a medical doctor and a freelance medical writer living in Oak Park, Illinois. The Independent Review, v. VIII, n. 2, Fall 2003, ISSN 1086-1653, Copyright © 2003, pp. 259–270.

2003. Six years ago! Still makes sense to me.
 

Saturday, August 8, 2009

Patients, listen up: the power of your attitude

One aspect of patient empowerment is taking responsibility for your/our situations. In the new discipline of participatory medicine we talk about collaborative partnership with our providers (docs, nurses, all the professionals).

One doc, Stanley Feld, talks about "physicians as coaches, patients as players." Another well-known hotshot, Fast Company's "doctor of the future" Jay Parkinson, talks about being "the CEO" of your body - the one who makes the strategic decisions and assembles the team. (The CEO doesn't have the required expertise, but is responsible for acquiring it. The experts advise, but the CEO is responsible for using the advice.)

And in my view, one aspect of this is being responsible for the mental aspect: our attitude.

This comes to mind because tonight I ran across this, a journal entry from the start of my treatment:

DO YOU HAVE CANCER, OR DOES IT HAVE YOU?

If this question's new to you, think about it. When I first got the diagnosis, the cancer sure had me: I was at its mercy. Every change in my outlook came from outside me: it was something that seemed to happen to me, something over which I had no control.

I have a mental image for 'the cancer has me.' In that image, the cancer is like a big dog with a chew toy (me) in its jaws, shaking the daylights out of it and tossing it around.

The pivotal change came when I chose to get in action and do whatever I could, learn whatever I could. Mind you, who am I to know how to fight a cancer?? Do I know anything about the biology of cancer? No. But now my outlook is that I have a cancer in my life, and I'm doing what I can to manage it .... and I'm creating new ways to interact with it, beyond what others have thought of. (Your feedback here tells me that.)

I say it's vitally important that YOU realize what a difference this makes. Remember something I said back in February: citing a study, a nurse in my email group said 'If you're actively involved in creating your care, learning everything you can, and finding the best care available, then your outcome automatically moves to above the median.'
Paul Levy posted that on his blog 120 weeks ago. (A bit over two years, though it seems like ten.) His post drew an unhappy comment from someone anonymous:
This is the sort of American positivity that drives me nuts. Unless you're lucky enough to catch it early or have one of the curable ones, cancer will probably kill you in a few years. This is a time to put your affairs in order and do those things you always wanted to before you die, not be all positive and managerial.
Well, we all know how THAT turned out. :-) (Another anonymous commenter responded, "Buzz off, Eeyore.")

In the prolog to my journal I cited Norman Cousins's great book Anatomy of an Illness, which chronicled how he used belly laughs, love, hope and faith in beating an unbeatable stomach cancer. His book starts:


That was thirty years ago, folks. Back then nobody knew the facts that today we call psycho neuro immunology. (Attitude [psych] measurably affects the nervous system [neuro] which measurably affects the immune system [immunology].)

Yes, folks, it's been shown that your attitude can affect your immune system. You gonna take responsibility for that?

Friday, July 31, 2009

Disgusting, racist anti-reform crap

Ordinarily I ignore political emails full of idiocy, but this time I've had it. I've received this image in the email three times. It makes me puke, and so do the people who've sent it to me.



You really have to wonder who put this together. Clearly it's from the Republican side of the house, and clearly it's racist, and clearly it's either air-headed or (if it's not from an air-head) it's from someone who has a brain and is using it for raw, racist, BS propaganda.

Against health reform.

Putting Obama's face on a jungle denizen's body, then attaching a Communist hammer and sickle, and attaching it to the health reform subject, is purely hateful. It disgusts me.

Really, think about it: who put that together? What was their motivation?

Tuesday, July 28, 2009

Customer Service in Healthcare (not):
An All-Too-True-Story

Cross-posted from my day-job blog

exasperated woman

What is wrong with these people???

I've been having a pain lately, in an arm that shouldn't be having pain due to a past condition. The orthopedist who took care of my bones said to get an x-ray at some local shop and send her the CD. (She's happy to save me the time of driving into Boston, and she knows local clinics can make a good x-ray.)

So I called the radiology department of a well-known, highly rated clinic in nearby Burlington – let's call it Elsie – to make an appointment.

(You know about appointments. They help customers get served quickly and conveniently, and help managers plan their resource utilization. The win-win thing.)

Me: "Hi. My doctor says I should get an x-ray and send her the CD. Can I do that? -- Good, I'd like to make an appointment."

Elsie staff: "Oh, you don't need an appointment. Just come right in. I mean, you can have one if you want, but you don't need one."

Me: "Cool!"

Me to my manager: "I'm going over to Elsie to get an x-ray. They said I can walk right in – should be quick."

I get there, find my way through their campus (the directions were perfect), and find radiology.

The line to check in goes out into the hall. And at the front of the line, the sign on the desk says the current wait time is 30 minutes.

I look at my watch, conclude I don't want to wait 45 minutes (or even 30) for a "no appointment needed" x-ray, and leave.

The parking machine wants money for my ticket. I talk to the cashier and the information counter; saying I wasn't able to get my appointment so I don't want to pay. (I've been there less than 10 minutes.) Both people look at me like I'm crazy and say there's nothing they can do. A third person says maybe security will validate it. They gladly do.

On the way out I call again.

Me: "I want to make an appointment for tonight."

Elsie staff: "Oh, you don't need an appointment. If you want to make one for sometime tomorrow you can."

Me: "I can't make one for this evening so I don't have to wait?"

Elsie: "No…" (sounding rather uncertain about why I'd be asking)



It's clear to me that my time is not the slightest consideration to this clinic. I've been hearing this about healthcare in general, but I know of places where they do care. (My own hospital is one of them, and I know there are others.)

I just wonder, what on earth is so complicated? I happen to know first-hand that an appointment system for a few workstations is not at all expensive. (I work for TimeTrade Appointment Systems.) Instead, they have a line of people out into the hall – sick and injured people, typically – and they cheerfully (genuinely cheerful) say "Oh, you don't need an appointment."

Right: just show up and wait. We'll get to you when we get to you. Reminds me of the t-shirt that says "I don't have a drinking problem. I drink, I get drunk, I fall down. No problem."

Methinks the world of healthcare is (mostly) so wrapped up in its own importance that it doesn't even occur to them to respect their customers' time. And that's gotta change.

Sunday, July 19, 2009

Terrific Apollo 11 photos

This is a small break from our usual health-related fare, for good reason. (I say so, and it's my blog, so my opinion rules.)

The Boston Globe's site Boston.com has a terrific series of 40 photos about the Apollo moon landing 40 years ago. Most are pictures I've never seen. I encourage you to go look.

Amidst all the world's cynicism and uproar today, this story continues to inspire, and for good reason.

My favorite pair: Neil Armstrong before the launch...



...and after he'd walked on the moon:



These astronauts were all tough-guy military test pilots, but I recognize that smile: I knew an awful lot of hippies who had exactly that same grin on their faces back then, albeit for different reasons. It's called, approximately, a spit-eating grin.

Call me a fool, but humanity continues to inspire me. That was forty years ago, people. Think what more we will achieve.

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A tip of the hat to fellow alum Mike Laird for this.

Thursday, July 9, 2009

BIDMC's Dr. David McDermott on medical options for kidney cancer patients

In May I posted an interview with Dr. Andrew Wagner, the surgeon at Boston's Beth Israel Deaconess Medical Center who removed my cancerous kidney (and adrenal gland) in March 2007. In that interview we discussed the surgical options available to kidney cancer patients.

Here's the second in what I hope will be a series of podcasts for kidney cancer patients. This time it's oncologist Dr. David McDermott, of the famous Atkins-McDermott team.

Doctors McDermott and Wagner head the renal tumor program at BIDMC, which is an integrated "solution shop," a term used in some of the latest views of how to design healthcare delivery systems. More on that, another day. But for now, here's the interview.




p.s. Yeah, I know 40 minutes is too long. But y'know what else? Concerns about things like that are what keep people from trying things. And for better or worse, I just ain't the kind of guy who's afraid to try. Having been through this twice now, I can see a LOT of things I hope to do better in the future.

So hey, what are YOU not trying because you figure you gotta first know what you're doing?
____________

Next in this series, Sept. 1, 2009:
Dr. McDermott discusses MDX-1106, an experiment treatment


Or, view all my podcast posts.

Saturday, June 27, 2009

What it's all about

Tonight I'm doing something unusual for this blog - posting a story that has nothing to do with healthcare reform or policy issues but has everything to do with what healthcare is all about: keeping people alive and healthy.

Mike Guanci is a terrific sales guy at my company, TimeTrade Appointment Systems. Last summer his wife Patrice, age 39, had lower back pain (among other things), was found to have a fractured vertebra, and was diagnosed with non-Hodgkin T-cell lymphoma. The odds were not good. With four young kids the situation was especially poignant - not that there's ever a good time to have a rough prognosis, but having kids makes it rougher.

Patrice underwent an autologous stem cell transplant at Dana Farber Cancer Institute in Boston. It's an arduous treatment in which your entire immune system is killed off, including the disease, and then your own stem cells ("autologous"="your own"), harvested before the treatment and reinjected, grow a new immune system from scratch. During that time you're entirely vulnerable, and almost literally live in a bubble in the hospital.

Needless to say, when this works it's nearly a miracle. And it worked.

Here's the notice Mike posted on Patrice's CaringBridge site Thursday.

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Hi Everyone,

Today was a pretty big day in Patrice’s recovery. They did a PET scan on her to see if any lymphoma had popped up since her transplant in January. Thankfully, there’s none. They did see something in her nasal cavity that they want to take a closer look at but the docs think it’s a healing cold/allergy – and nothing to do with her lymphoma. They will take a closer look (to close the loop) via a scope but the doctor was confident enough that tomorrow they are going to remove her port (the access way they implanted in her nearly 9 months ago)

It’s hard to believe it’s been nearly 11 months since she was diagnosed. When we arrived at DF in mid-August of 2008, which seemed like 5 minutes ago (or 100 years ago on some days), they set our expectations right up front. She was going to go through a chemo regiment over 2 months (6 treatments every other week) – then, she would rest up and prepare for the Stem Cell transplant in January. After her stem cell (21 days in the hospital,) they told us that she would be confined to the house for 90+ days after. When you add that all up, they asked us to be ready for one year of treatments.

It was an incredibly emotional day for us both. Minutes seemed like hours, the day like a week. Finally, the doctor and the team arrived in the room and gave us the news. I must admit it was tempered happiness. I bought a bottle of champagne for this day – but it didn’t feel like a celebration, for some reason. Don’t get me wrong, we are thrilled – but when you are at Dana Farber, you see others who are battling so hard, for their lives. Not all will make it. In fact, not 5 minutes after we left the exam room walking on cloud 9, we walked by a teenage boy, bald as a cue ball, with one leg, headed in for treatment. It’s sobering, to say the least.

I’ve learned a ton from Patrice’s doctor. The high isn’t too high, low isn’t too low. That’s the way we are treating this. Lymphoma will always be in our lives (God willing only as a memory) – Dana Farber will always be in our lives (and based on the brand new 16 story building they are erecting, a lot of other people’s lives too)

The support our family has received has been overwhelming. It’s humbling. There have been many times this past year when I had the feeling I was in a boat with no oars headed for the falls. And someone on this email list would step up. With a meal for the kids, a kind email, a text, whatever. I can’t thank everyone enough. I wouldn’t recommend this experience for anyone. It’s like recording your life, live. There aren’t do-overs or rehearsals. We made some mistakes along the way, but overall, I’m incredibly happy and think our little family was chose by the “Big Man” for a reason. To see our littlest one, Caroline, bopping around Dana Farber, not afraid, is a gift in its own right.

So, we are closing this chapter. And starting another. Patrice’s hair is growing back. She looks and feels better than she has in years. And, she and the kids are headed back to NY for the summer to pick up right where we left off.

A final thought. If you read the blog in January, there was a security guard that I used to give the “knuckles” to each night when I left the hospital. He had no idea who I was but after a week or so, he caught on. Well, I was hoping he was there today. Sure enough, on our way to the car, there he was at the same post. I walked up to him and gave him the knuckles. Not surprisingly, he returned the knuckles and I explained to him who I was (it took him a second then he was beaming) – when I turned to introduce Patrice, I told him this was my beautiful wife who was in the hospital all that time and that she’s on her way to recovery. We both turned to look and Patrice was smiling and as beautiful as ever, and he just mumbled to us,

“God is good, man, God is good.”

Enjoy the Summer!!!

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And I would say, many many blessings on all the people who were called to go into medicine, to produce this kind of result. It is about saving lives, it is about changing the course of disease. And when it works like this, it means there will be a mom at four high school graduations, a mom who might not have been there.

I can't type that without getting lots of tears in my eyes. Blessings indeed on all of you who do this work.