Evolution, year 2: 2008 – the e-patient movement and starting to speak

Last month I started a ten part series of retrospective posts, reviewing where I’ve been and how my perspective has significantly changed what I’ll be doing from now on. The first post, on 2007, was when I was diagnosed as nearly dead and got better; this is 2008.

I’d started my old blog at Thanksgiving 2007. Two months later, in January, my life took a sharp turn when I discovered e-patients. Here’s how the year unfolded.

January 24: Google Health

In hindsight this is amazing, but my tenth blog post ever was about the announcement of Google Health: What’s next, Google Health??  I said it’d be a cold day in hell when I’d trust Google with my health data. 13 months later that would change radically, which would change my life.

January 23-28: The e-Patient White Paper and “e-Patient Dave”

The day before that, on January 23 Dr. Sands had emailed to introduce me to his friends in the e-patient community. They were the friends and followers of “Doc Tom” Ferguson, the internet visionary who had died in 2006 before finishing a manifesto funded by the Robert Wood Johnson Foundation: e-Patients: How they can help us heal healthcare.

For years Tom had invited those friends to an annual get-together in Texas, and this year they invited me to join them. In the year after his death the friends had completed the document, and now Danny suggested I read it – and come join them.

I read it in three days and it blew my mind so much that I literally renamed myself on the 28th from Patient Dave to e-Patient Dave:

With my discovery on 1/23 of the e-Patient Scholars Working Group, my entire outlook on life has changed – so much so that I’m changing the title of this blog from “Patient Dave” to “e-Patient Dave.”

That’s because I’ve found my purpose for this blog. … I think I’ve found the answer to a question I’ve asked in recent months: “What am I going to do, what am I going to create in the world, out of my experiences of the past year?”

February: meeting the “friends of Tom”

In late February I went to Texas with Danny for the annual gathering of “the FOT” – friends of Tom, who a year later created the Society for Participatory Medicine. I met such amazing people as Susannah Fox and ACOR founder Gilles Frydman, and also got my first chance to express the evangelistic question to the e-patient group: “Why on earth are we not trumpeting this information??”

Summer: a book of hype, with insights: The End of Medicine

That summer my longtime friend George Alexander sent me this book, by a Silicon Valley hotshot trying to figure out why cures don’t explode with innovation the way high tech does. I thought the title was insane – the end of medicine?? Who the heck is going to put my oncologist out of business??

But I got two big takeaways:

• The reason cures don’t explode with innovation is that you can’t just compute your way to an answer. As he put it, “biology doesn’t scale.”
• BUT, this was also the first time I saw someone question what I now know is called “relative risk reduction”: the common marketing claim “This new drug produces a 35% improvement.”
  • Sure, but 35% of what?  A huge problem or a tiny one?? (As a Silicon Valley analyst, this author’s accustomed to seeing through smoke and numbers: is anything real in there?)
  • Example: statins reduce some problems 35%, but it turns out that’s a reduction from 1.5% to 1%!  Only 1/2% of users get any benefit!  For this we spend billions a year on that drug?

This was my first hint that the numbers we hear in medical news can be overhyped as badly as any other industry. At the time I shrugged it off as odd, because I still had complete faith in the industry that had saved me. But today I know this is a real problem – here’s my latest post on it.

October: Connected Health conference at Harvard Medical School

In the Fall something odd and fun happened: my primary physician Dr. Danny Sands got us invited to present my cancer story at the new Connected Health conference at Harvard Medical School. We presented it to a nearly empty room with only 20 people, but I also got my first exposure to a medical conference, and really felt the pull.

Specific memorable moments:

• One speaker was internet guru Clay Shirky, author of many important papers and books about how the internet is empowering citizens in all walks of life. In the closing session he said something that stuck in my ear about online patients: “The patients on ACOR don’t need our permission and they don’t need our help.”

• Matthew Holt, the eternally leg-pulling/smiling-cynic head of the Health 2.0 conference, gave me my first advice about maybe making a business out of this. Every word he’s told me has panned out (though he’d surely insult me for believing him!)

• One man in our small audience was Peter Waegemann, who invited us to come present it again at his “TEPR” conference the next February in Palm Springs. That turned out to be fateful, as you’ll see in the next post.

Note: in 2016 (eight years later) Connected Health got bought by HIMSS, the giant health IT system organization. A few months later (2017), so did Health 2.0.

October: meeting Phil Longman, author of Best Care Anywhere

I don’t remember where I heard about this book, but it was so remarkable and had such an impact that I blogged my way through it as I read it. Here’s part 1 on my old blog; each one links to the next.

Also in the audience at Connected Health was John Logan of the Irish business development office in Boston. In October they had a dinner evening, where he asked me to give a short version of my story. There I also got to meet Phil Longman (Wikipedia), author of this book.

Longman’s wife’s final illness had been a tragic mix of screw-ups in private hospitals (e.g. x-rays and records that simply disappeared). After she died he committed to go find “the Jack Welch of healthcare,” some super-executive who was producing remarkable metrics in hospitals that were competent. To his surprise he didn’t find it in private healthcare (profit or non), he found it in the VA: according to sixty peer-reviewed papers., they were a better health system than private hospitals.

This was before Obama was elected, never mind before Obamacare became a controversial thing. The VA has been a political hot potato in recent years, and they have screwed up, but as I’ve since learned, there are few truly safe and reliably, conscientiously competent hospitals in the US – the big difference is that the VA gets a ton of spotlight on it. Imagine trying to do all of what the VA does while also spending a lot of management time being a political football.

This was the second book this year that put a serious bend in my mental trajectory, learning how vastly different reality can be from what “everyone thinks” is true. In short, everything that’s unfolded for me since then has substantiated that both books are right. Combined with the miracle of my own salvation a year earlier, I started to form these global conclusions:

• Healthcare and medical science are very, very, very complicated.
• A lot of good things can be very true, while a lot of other things can be very, very screwed up to the point where people die because of the screw-ups. The good being true doesn’t mean the bad doesn’t happen, and vice versa. Watch out.
• The financial aspects – especially in America – add a layer of far more complication, with a large amount of utter insanity mixed in … and sometimes outright corruption, making it very hard for healthcare to achieve its potential in saving lives or keeping people healthy.

December: Meeting a Greek at an Irish party

Finally, the Irish invited me to their Christmas party at a pub in Boston. By coincidence I ran into another kidney cancer doctor, from Mass. General, Dr. Othon Iliopoulos, who deals with rare subtypes. We talked about my case, particularly my mental attitude, and many doctors’ fear of giving us “false hope.” He agreed excitedly with my views and shared this, which I love:

When patients asked me, “Doctor, can you save me?” usually I would answer, truthfully, “Probably not,” and I would watch the life go out of me.

Now I’ll say, “I don’t know – but we will try. Will you work with me??”

What more can we ask? Can you see what a wonderful difference that would make to a patient who knows their life might be ending?  And then he adds;

“Just one thing: if we succeed, you must drive carefully. We don’t want to go through all this just to have you die in a car!”

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Afterthoughts (added after posting):

Looking back, I remember too …

• In February at the “friends of Tom” gathering I met Jon Lebkowsky, someone who’s been doing social media since before the Web: he was on the pioneering online forum the WELL, and he really knows how things play out. This was when Twitter was brand new, and people were scoffing at it, saying “Who cares that I had a tuna sandwich for lunch?” But @JonL said what it’ll be good for is finding others and getting found, particularly reaching people with new ideas, people you’d never have been able to reach. I joined Twitter that day, and he was danged right.

• On election day, November 4, I was in San Francisco for my day job, at the huge DreamForce conference for users of the Salesforce.com CRM system (customer relationship management). I was the Salesforce admin for my company, and I’d been nominated for the “Appy Award” in marketing excellence. Much to my surprise, I won!
  • I’d established that Google Adwords had given us a 68% increase in new customers the previous year. (Salesforce let us track where inquiries came from that eventually became orders. Data is good thing, if it’s accurate and well managed!)
  • The relevance of this will come out in the next post: I was an ordinary but capable user of data and automated workflows.
  • Receiving the award from Salesforce chairman Marc Benioff [photo] in front of tens of thousands of people gave me a clear feeling that I like being in front of an audience.:-)
  • Obama was elected, which soon had many effects on US healthcare (and thus my trajectory).

• The next morning I got to meet a remarkable doctor whom I’d already known on Twitter: @TedEytan of Kaiser Permanente. He is the embodiment of generosity and caring, and has turned out to be an exemplar of so many “good ways to be.” Here’s his blog post about it, including this photo at DreamForce.

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In each post I’ll include a running tally of my blog posts, speaking events, significant moments.

By the numbers: 2008

Writing:

• Blogs
  • my blog 105 posts. Previous total 5; total 110.
  • e-patients.net 47 posts
  • Total: 152 this year, 157 total to date.
• Publications: none yet.

Speaking events: 2 – Connected Health and then the Irish business development evening.