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.)

Authentic Value: Being Known in e-Patient Communities

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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.

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 reporting – including the journals. Wise up.

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

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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.

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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)

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.)

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.

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.

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. :-)

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!