My day-job blog is live!

Please visit my brand new day-job blog, No Lines, No Waiting.

I can't believe I finally get to do a blog during WORK HOURS!

I'm putting my data in Google and HealthVault

I've decided to go ahead and put my data in Google Health and MicroSoft HealthVault.
(Note: MicroSoft HealthVault is a different kind of thing from Google Health. About the only thing they have in common is that I can put my health data in them. For this post I'll only discuss Google, but the concerns people have about the two are similar, and so are my thoughts.)

This is something of an earthquake on The Dave Planet. When Google Health was first announced in January 2008, I was completely distrustful and wrote What's next, Google Health??, concluding with this:

GOOG's stock is doing great and I love their free tools, but there's no way in hell I'm giving them sensitive personal data, regardless of what their policy says. New motto for 2008: Don't Be Stupid.

It was a direct slam against Google's long-professed unofficial motto "Don't Be Evil." I expressed my concern that Google might succumb to government pressure and dish out personal medical information that someone had entrusted to Google Health. I cited how Google had caved in to China's government, and how Google CEO Eric Schmidt had severely punished CNET.com for googling his personal information and publishing it. I saw hypocrisy.

Others agreed. One online forum discussed the potential for abuse, given that Google collects enormous information about each of us as we browse the web and use Google's search features – they know what you've searched for and (through ordinary marketing software that most web sites install) they know what sites you've visited.

They say they won't use that info; but... what if? What if an evil politician (take your pick: Dick Cheney, Hillary Clinton, Putin) puts the squeeze on Google to disclose such information so they can use it against you? That's less improbable than what actually did happen to Valerie Plame. In cases like that, laws will not protect you.

In online discussion groups, experts in "search engine marketing" joked about it: If Google knows you have a kidney problem, then the Google Maps "Street View" feature might point out potential donors, and the ads on the side of your screen might start promoting bathtubs and ice. (Yes, people did joke about that.)

That's a bit over the top, but you get the point.

Similar concerns continue today – this delightful image appeared on a ZDNet post this month, titled Is Google health corrupt?

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So why have I gone over?

• First, in the past year an increasingly wide range of people I trust have said "The data you're concerned about is already not as secure as you think." That doesn't leave me any more comfortable but I've come to accept that my choice of action won't make much difference.
  
  
• Second, and more importantly, I'm concluding that we can do more good by aggregating our data into large, anonymized databanks that smart software can analyze to look for patterns. Early detection means early intervention means fewer crises.
          Diabetics are already starting to do things like this. And the Cambridge MA-based PatientsLikeMe is a full-blown example of a community (ALS / Lou Gehrig's disease) where patients are tired of waiting for the medical industry to produce results. They're uploading their data (anonymized), sharing it, looking for patterns, even creating their own clinical trials.
  
  
• The third aspect, ultimately the deciding one, is something I see all the time in my day job, where we study new software tools: the power of "mash-ups." That's the ability to slap together two pieces of software (or data) that were created without knowing that the other one exists, and making something new out of them without anyone planning it in advance. Things can just grow in any direction people want.
          Mash-ups are a big part of what makes the Web what it is today: Anyone can put a Yahoo Map on their web site, I can take someone's YouTube video and put it on my blog, etc.

The power happens because this lets people create software gadgets without knowing how they'll be used, it lets people build tools that use data without knowing where the data will come from, and it lets people build big new systems just by assembling them out of "software Legos."

And in healthcare, that's what free public tools like Google Health and Microsoft HealthVault enable. Here's the personal example that hit me recently and tipped me:

When I was discharged from the hospital after my first week of Interleukin, I was given a complex medication schedule grid – which had to be created with pencil and ruler by a highly trained nurse.

This was not a sensible use of her time. So, being a software thinker, I spec'd out a "Med Minder" program that would take prescription instructions ("take this one 3x/day, take this one with meals," etc) and spit out a nicely printed daily schedule. I had additional ideas: "mash it up" with a database of pill images so you can see what pills to take; "mash it up" with a database of different Walgreen's pillboxes so you can see what to put in each cell of your particular pillbox.

I talked to a few people about it and hadn't found anyone interested in the idea.

But at the Google Health booth at a recent trade show, look what I saw: ePillBox.info. It takes your prescription info from Google Health and tells you how to fill your pillbox.

It was an epiphany: put my data in there, and I get access to mash-ups. All kinds of potential tools that I know could be useful become possible. The healthcare establishment isn't getting around to doing them, but ordinary data geeks are.

So here's how it boils down:

My goal is to help create a new world where healthcare is enormously more efficient than it is today, and where important new developments happen enormously faster than they do today.

And with that in mind, the advantages of uploading our data far outweigh the risks.

So I'm in.

Feeling grief means being alive

A potent, poignant post today on the PsychCentral blog.

Feeling Grief Means Being Alive: 7 Tips to Help

If you've ever experienced grief over a loss, be ready to recall some emotions when you read this.

In my own cancer adventure, especially at the beginning, I had to experience grief: the anticipated loss of everything I knew, the prospect of saying good-bye to everything and everyone I know, saying good-bye to my entire future. Today, that confrontation has left me more alive than ever: I know each day is a reprieve from that loss.

My time will come someday, as will yours. Tomorrow is the memorial service for a former co-worker in Minnesota; in December a high school classmate took her own life; yesterday a current co-worker's mother finally passed on.

Grief is our lot: it's part of the human condition, as social beings who care. And having been there, I have a strong sense that ability to feel those feelings cleanly and clearly is good for our health.

Speaking of experiencing feelings, I recently started a little "hobby blog" that's serializing my cancer journal from two years ago. Every post that I made on my CaringBridge journal is set to reappear, two years later, to the minute. Here's that new blog: Laugh, Sing and Eat Like a Pig. The current post, from 2/19/07, is about a related topic: a few weeks after my diagnosis, I realized that how I viewed my tumors could make a difference, and I shifted my perception, to be more accepting of everything. Who knows how much that affected my outcome.

Having said all that, I'll also say that the work we do to improve healthcare has as one of its objectives the prevention of premature grief.

And all that adds up to this advice: while alive, be very, very alive. Just enjoy the heck out of this day and every day – and every glorious person who crosses your path.

E-Patients, stand up for the patient voice at Transforming HC 2009, 2/26 in Boston

Late update: If you've read about this elsewhere and you just want to vote for the proposal, click here. You'll see the number of votes and a tiny "Vote For" caption. Click it.

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Prolog: social media is all about user-generated participation, a great thing for empowered patients, but all the Twitter mentions of this event are passive publicity like "Hey there's an event," instead of "Add your voice" as e-patients do! We're empowered and engaged; we create our own dialog; we participate. This post invites you to do so, because the conference organizers have invited us to. Do it!)

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E-Patients to the fore: time to speak up! This is a Boston event but they're taking input from everywhere. Yes!

On Feb. 26 I’ll be attending an evening event in Boston, Transforming Healthcare 2009. Interesting for two reasons:

• Some serious CEO-level voices:
  
  
• James Roosevelt, CEO of Tufts Health Plan (one of the best in New England) and member of the Obama transition team
  
  
  
• Charlie Baker, CEO of Harvard Pilgrim Health Care, my own insurance company, and a great health policy blogger
  
  
  
  
• John Glaser, CIO of the Partners healthcare system (Mass. General and related hospitals)
  
  
  
  
• And more
  
  
• Excellently, they're taking user-generated, online, user-voted questions. Holy cow, yes, event organizer Steve Wardell is using a real Web 2.0 social media tool (UserVoice) to create the conversation in advance, from the community! You get to speak up. (Guess what I think you should do.)

Yes, we get to create (and "vote up") the questions we'd like asked of these people. There's expected to be serious media coverage, too.

But here's the thing: I have serious concerns about the questions that are already in the list and top-voted. They're computer-oriented, not patient-oriented. Example:

How patients should expect to impacted by the EHR incentives
Patients will need to understand issues around privacy, access, and portabilty of their digital records, as these records become more pervasive as a result of the new incentives. How can we engage patients as supportive partners in making sure the electronic information in their records is accurate, complete, and being appropriately contextualized?

We?? Who's "we"? Not the patients, evidently!

I created a question, just as you can. You can vote for mine (free), comment on it (hint hint), or add one yourself. Here's mine:

What about enabling user communities like ACOR.org?
We're missing a *major* opportunity if we think health IT is limited to giving providers new systems. In my own cancer, sure I read & shared my online medical data in PatientSite, but the most valuable info I got anywhere was from my ACOR cancer patient community. Every condition needs something like this. Microscopic cost, enormous payback!

Attend if you can. (Let's have a meet-up!) But even if you can’t, speak up online:

• Vote for the questions or create ones of your own
  
• If you’re a blogger, blog about it and ask your readers to participate too.
  
• Same if you’re a member of any healthcare community.

See, if we don’t speak up, conference attendees will rightly conclude we don’t have anything we want to say. And they might even conclude there aren’t many empowered patients who have anything that they want heard.

Plus, if you and I haven’t met, we can have a tweet-up and meet-up. Do it.

If money’s your only reason ($79) not to attend, volunteer: “We’re looking for volunteers who can help us get our message out by blogging, taking photos at the event, and helping with logistics. Let the organizers know you’d like to volunteer by emailing us here.”

Wardell has given us an opportunity to be heard. Good for him! Go click, vote, participate.

Empowerment applies to every aspect of your health

The way we talk about empowerment, it sometimes sounds like it's all about participation between doctor and patient. There's more to it.

Consider what Norman Cousins wrote in Anatomy of an Illness thirty years ago:



Here's a live specimen of what he meant, on the hoof: on my ACOR kidney cancer listserv, a woman who calls herself Goodsister wrote this Friday, in a discussion of how we cancer patients view our situations:

I find myself wanting to know more about the specifics of the correlations, as Dave said, and yet unsure I want to know, in case my own situation might point to a high likelihood of recurrence.

Part of me thinks like this: The cancer was a mistake my body made. Oops - my immune system got confused; derailed by the stress and misery of life events, it failed to recognize cancer growing in my kidney. When the tumor had grown quite large, my body then threw me a clue: Here's some blood in the urine for you. And it did so BEFORE I had metastasis - visible metastasis, that is.

So after this first clean scan a week or two ago, I am just going along with some kind, encouraging thoughts for my immune system. "Stay awake, little immune cells, and patrol the perimeters. Anything that starts acting weird, jump on it. Here's some nice Japanese green tea, to saturate my blood with the anticancer attitude. Here's some flax seed and PSK mushrooms."

My current operative POV is the same as the slave in Gladiator, discussing the inevitability of death: "Not yet."

Isn't that terrific? Isn't that a whole different point of view compared to the common "woe is me"?

Good job, Goodsister!

A thousand points of pain

E-patients, listen up. We have work to do, work we can do.

First, the challenge. Imagine you're trying to untangle a massive, knotted ball of strings, and every time you tug on one, you hear a scream of pain.

Now imagine that it's an economic knot, and every scream is a billion dollars of pain.

And now imagine there are a thousand strings in the knot ... a thousand points of pain.

That's the reality we face in American healthcare. It's a $2.4 trillion knot, severely dysfunctional in that it costs more and has poorer outcomes than any other developed country. Yet as Tom Daschle's book Critical details excruciatingly, every time we try to improve it by tugging on one part of the problem, powerful parties scream in pain, because they have a lot of money at stake.

(Strictly speaking, it's 2400 points of pain, each a billion dollars. I'll stick with the "thousand points of" meme.)

$2.4 trillion is 40 times bigger than Microsoft and Google put together. Imagine if you had to try to fix something that big. How long would it take?

Another view: it's been said for years that healthcare costs 50% more here per person than in most developed nations. If we could fix that with the wave of a hand, our total spending would drop by one third. And that means we'd instantly cut out $800 billion of business (1/3 of $2.4 trillion). Somebody would be spending $800B less, and somebody would be getting $800B less.

Citizens, that's going to hurt. And a lot of people are going to fight against it - not because they don't want better healthcare, but because they have a lot at stake, and it's tangled.

This is a big issue, but we do need to fix it: lives are at stake. Patients and their families are facing lethal diagnoses every day, and we/they need the system to work better than it does today. And that brings up another way to look at "a thousand points of pain": there are 1,000 cancer diagnoses in the US every six hours.* We need the system to serve us well. (And that's not to mention other life-changing diagnoses: Cushing's Syndrome, diabetes, and so many others. Did you know rare diseases are more common than the most common disease? Rare Disease Day is Feb. 28. Might be a thousand points of pain every hour – in the US alone.)

Personally, 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.

The thousand points of pain will work on their aspect of it, and we need them to: I may be an e-patient, but I wouldn't have dreamed up the high dosage Interleukin-2 treatment that stopped my disease.

So 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.

Shall we band together? I'd love to build a killer-fine list of noise-making, world-changing empowered patient blogs! As new Web tools come online, we can help each other build the new world of participatory medicine.

List yours here for the world to see, if you want. We'll keep in touch.

*1,444,920 new cases in 2007

You go, Chris McCulloh!

I've written several times about my 29 year old cousin Chris McCulloh, who was a few months shy of entering Case Western Reserve medical school when, in January 2008, he fell at home and got a C6-C7 subluxation. (As I understand it, a disc between two neck vertebrae popped out of place and severely scrunched the spinal cord, causing total paralysis from there down. I imagine that's imprecise but you get the idea.)

Like me with my CaringBridge journal, he started a blog. Like me, he's posted anatomically cringe-worthy images of his injury.

The man has battled back phenomenally. At first it was not certain he'd ever stand, let alone walk. It was big news in May when he moved his left big toe, and a few days later I like to kick people. (Attitude runs in the family!)

Started standing (flotation-assisted) in the pool in August, first steps in September, back on the ice playing paralympic hockey in November.

Now, in today's post, I find out the guy's been out traveling, solo – no traveling companion, got himself to Amtrak and to DC and to the hotel to attend his conference. And, of course, he gripes (as I did when I used scooters and walkers) about idiotic "accessible" facilities that clearly were never even tried by anyone in a wheelchair. You go, cuz. :)

Next weekend he takes his first plane trip, to Cleveland, to resume his medical school career where he left off.

Holy cow. He's a monster.

Read it.

Please support "Anatomy Students Love Histology"

I'm extremely proud to announce that my daughter Lindsey, in her first year as a high school science teacher, has conceived a great project to help her students prepare more fully for college. I'm asking that you consider a small (or large!) donation to support the project. The project description and donation form are on DonorsChoose.org, a terrific new web site for classroom projects.

Lindsey's proposal talks about helping students prepare for college-level courses by teaching them histology: "Anatomy & Physiology is a relatively new course at the high school and there are not many supplies. We are working on developing a new curriculum for the class and do not have much to go on." She wants to buy sample slides of the different cell types for students to examine under a microscope. Full details are online.

The site asked me to say a few words for a note to accompany the donation (presuming the $373 goal is met). Here's what I said:

I'm making this donation because I know first-hand that biology students can go on to careers that change lives. America and the world need more good people who want to do this. You can be the one. Learn well.

Please give anywhere between $5 and $6,000. :)

p.s. This whole idea came up because I was given a DonorsChoose gift card when I won a software award back in November. I got to pick a project for donation, so I asked Lindsey to create one. But I'm so inspired by what she came up with that I went back and donated more!

Healthcare IT News covers the Danny & Dave Show

Oooh, hotcha, this is fun.

TEPR's advocacy for online resources includes a story of survival

The effort to develop social networking tools for healthcare took a personal turn at this week's TEPR+ conference in Palm Springs, Calif.

During Monday's opening session of the Medical Records Institute's Towards the Electronic Patient Record (TEPR+) conference, attendees were introduced to Dave deBronkart, a Nashua, N.H. businessman who recently survived renal cell cancer - and who attributes his victory in part to being an ardent Web surfer. ...

Click headline for full story! And register there to comment, if you have anything to tell the nice people about how Internet use is letting e-patients change healthcare for the better.

Social media in a medical crisis takes off

This page lists CaringBridge as the third most-used system for blogs, as judged by # of visits to their pages.

I have over 18,000 visits to my CaringBridge.