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wellness

The First (unofficial) Medicine X walk & run

MedX Walk Run Stanford’s Medicine X is a workout for your brain. For those who want to workout their bodies too, now you have an option. Here’s an unofficial Med X walk run option.

As a reminder, the conference begins at 8:00 am sharp. Breakfast is offered starting at 7:00 am. Many runners eat breakfast before their run. But, do keep the conference schedule in mind when considering your walking or running pace. Since this is unofficial and loosely organized, you are welcome to start a route earlier - we'll find you out there!

  • When Saturday September 28, 2013 starting at 5:00 am and 6:00 am (depending on distance).
  • Where Each distance starts from the Palo Alto Sheraton which is next door to the Westin.
  • Who anyone interested in walking, run-walking, or running before Saturday’s sessions.
  • Meet Nick Dawson and others at 5:00 am or 6:00 am outside the Sheraton
  • But I’m not a runner! Don’t worry! We’ve got a plan for everyone.

Med X is about community, participation and health. There is no pressure to walk or run at a certain pace. Whether you prefer a slow stroll or a brisk run, the goal is to spend some time together outside to wake up our bodies in preparation for waking our brains.

Routes and Distances The routes and distance options start with the longest, so the crazies among us can get in some miles and the more sane can sleep in a bit longer.

The entire course map can be found here.

11 Miles

The course for the 11 mi option Starts at the Palo Alto Sheraton at 4:50 am. We’ll head out around Palo Alto, following the linked route (above) in reverse order. We’ll run along the creek and then through neighborhoods and past some parks. We’ll join the 1mi, 3mi and 5mi groups as we loop past the Sheraton.

5 Miles

The course for the 5 mi option Starts at the Palo Alto Sheraton at 6:00 am. We’ll join the 3mi and 1mi group and head out towards the stadium. We’ll make a loop up Palm Drive and then head around the Medical Center before heading back towards the hotel.

3 Miles (5K)

The course for the 3.2mi/5k option Starts at the Palo Alto Sheraton at 6:00 am. We’ll join the 1mi and 5mi groups and head out towards Stanford’s iconic football stadium. We’ll head up the famous Palm Drive and around the Medical Center to complete a loop down football Rd back towards the hotels.

1 Mile

The course for the 1 mi option Starts at the Palo Alto Sheraton at 6:00 am. The 1mi route will visit the Stanford football stadium and beautiful entrance to campus along Palm Drive.

the email, the podcast and the simultaneous truths of genetic testing

The email Nearly six months ago, a physician friend sent me an email.

She wrote to me on the subject of genetic testing after I told anyone who would listen about 23andMe, Health Diagnostic Labs, and quantified self trends.

I can get kinda gung-ho about this stuff.

Her email stopped me in my tracks I’ve been paralyzed by it, unable to respond.

I have to respond to the queasy feeling in my stomach about untempered enthusiasm about commercially available genetic testing. I know you sat through statistics, and remember that in a low-risk population, the likelihood of a false positive test greatly outweighs a true positive test. I want you to add to that the uncertainty about what a positive genetic test means: “penetrance” means sometimes you have the genetic abnormality, but never get the disease, “mosaicism” means that not all your cells are 100% identical genetically, and finally there is the plain old uncertainty about how the environment affects gene expression. No wonder the USPSTF doesn’t recommend any genetic screening for the general population.

…Personally, I see patients who spent the $100 to get their ultrasound screen (read by someone who may or may not be qualified to do so) when they can’t afford their copay for necessary care. I think there is an ethical issue in that. That’s not even considering the counseling needed to negotiate the quagmire of heritable diseases. A recent conversation with a 40 year-old who just discovered she was BRAC2 (breast and ovarian cancer) positive around when and how to tell her adolescent daughters and how it would affect their decisions around marriage and children, brought this home. What if she did NOT have a family history and her test was a false positive?

The traditional argument against screening marketed to consumers is the added cost burden to the system of proving that those false positives are actually negative. (The statistical chance of having all normal tests on a 12 test panel is very close to zero.) Remember the classic article that 50% of care is unneeded? Isn’t this part of that 50%?

OK, I know there is also a lot of promise in this, and if we don’t explore and think about it it will never be ready for prime time. However it still gives me a queasy feeling when it is popularized. I was wondering if you thought about any of the issues above before you decided to be tested?

Boom. That put the breaks on the hamster wheel in my head.

I mean, I did think about a lot of those issues, at least as they pertained to me personally. But still her questions gave me pause.

Those who know me personally will attest I’m rarely at a loss for banter. (A middle school teacher once remarked: “Dawson would argue with a brick wall if it would talk back.”)

It’s not that I couldn’t think of responses. For instance: Some people would rather know than not know. Or, everyone has a right to chose for themselves. When it comes to cost, some argue, early detection through advanced diagnostics leads to less expensive treatment.

But I stalled, perplexed…

The Podcast

And then I listened to the latest Freaknomics podcast. Do You Really Want to Know Your Future? You can download/subscribe at iTunes, or listen via the media player below.

The podcast opens with Nancy Wexler discussing her mother’s diagnosis of Huntington’s, a genetically inherited, fatal neurological disorder. Wexler’s father founded the Hereditary Disease Foundation —an organization dedicated to finding a cure —which Wexler now runs.

Wexler speaks openly about the invention of a genetic test for Huntington’s:

DUBNER: If there had been a test available then, a test like the one that you helped develop later, do you think your mom would have taken it at a young age?

WEXLER: No.

DUBNER: Why?

WEXLER: Why should she have?

Later in the program, host Steven Dubner interviews Emily Oster, an economist trying to understand why some people simply don’t want to know what the future may hold:

OSTER: …I think what we come down to is the view that in fact largely the reason that people don’t want to get this test is because while they are untested they seem to be able to basically be able to basically pretend everything is fine and that that may be very valuable….I think what it tells us is that people care both about what they think will happen in the future and what actually happens. So you know, I enjoy going on a cruise, but I also value the time leading up to the cruise where I get to think about how great the cruise is going to be. I think often our normal, or standard economic models would basically say we only value the second thing, the only thing that’s beneficial of a cruise is the literal experience of being on the cruise. I think that what this says is in fact something that’s probably more comfortable for most non-economists, which is that there’s some value of, kind of, what you think is going to happen that that has like real benefits, or real costs for you.

 

The mantra

One of my favorite expressions is action conquers fear. We use it a lot in skiing. You can stand at the top of a mogul ridden black diamond and contemplate all the ways you'll fall and mangle your body. But the only way to settle the butterflies in your stomach is to make the first turn down the hill.

In the case of genetic testing, being able to take action on the results matters.

A friend and activist in BRCA testing and decision making suggests:

"...the key to all of this data is learning what's truly actionable. For something like BRCA, we have options. For Huntington's, we don't [yet]. But we need to build a model where we can find better preventative options for both diseases.  And I believe we can get there."

Knowing we can act on the results has a profound effect on the indifference curve (to borrow the economists' lingo), may impact our decision to test or not test. For instance, most of us don't shy away from taking our temperature to determine if we have a fever. We know how to treat a fever. But if we are contemplating something more serious and potentially life-changing, we may think differently about testing.

Each of us has to weigh the relative risk of knowing versus not knowing. 

The ah-ha

As simple, and even silly, as this may sound I found my ah-ha moment in the closing audio clips of the episode. It happened as I was walking out the door for an evening run.

Both things can co-exist: wanting to know and not wanting to know. And they can coexist in the same person.

The ah-ha is that there is no answer.

Whether we step through the looking glass or not, there will always be fear and rewards with both knowing and not knowing. They are simultaneous truths.

Will genetic testing bring some people peace? Yes. Might it incur unnecessary costs? Yes. Will knowing a propensity for a disease produce stress? Yes. Will not knowing have an effect? Yes.

I love the idea of two truths co-existing. Something can be reassuring and scary at the same time. Something cane be costly and cost-saving at the same time.

Absolutes, as it turns out, aren’t always absolute.

The podcast closes with recorded remarks from people who have a 50% chance of developing Huntington’s:

SHANA: My name is Shana Martin, I’m from Madison, Wisconsin, I’m 33 years old, I’m a world champion lumberjack athlete…I’m getting married in a few months, and we’re starting to explore having kids. And we chatted about it, I’m still quite firm that I don’t want to know.

 

 

>My name is Melinda Maher, I’m 25 years old and I’m living at risk for Huntington’s Disease…I hope to get a teaching job and I hope to move away from home and I hope to be able to move out and be on my own and have my own life and independence. And still right now I feel like if I were to test positive I would be afraid of that independence.

The Audio

The Prolog

 I asked my friend for permission to publish her email. She has again thrown down the gauntlet with more questions which challenge me to think deeper. But at the very least, we both agree that having these conversations is better than not having them.

What do you think, is it better to test, with the risks of knowing something you cannot un-know and may not be able to treat? Or, is it better to only test as needed?

Quant Self gaining popularity in other circles

I'm continuing to see references to self quantification appear outside of the niche world of quantified self devotees. This week on the TWiT podcast network, two of Leo Laporte's shows featured conversations about capturing, measuring and analyzing data about our own health. Now, certainly these two shows represent niche communities and interests of their own. TWiG focuses on cloud computer, social networking and Google. Security Now is about, you guessed it, security. What I find particularly exciting is both shows feature discussions about using personal health devices without knowing the term quantified self, suggesting the ideas of self quantification are creeping into other areas; the long tail is beginning to widen.

On Episode 138 of This Week in Google, the hosts discussed the Nike Fuelband device. Nike's Fuelband wrist-worn gadget made a splashy debute at this year South By South West, selling out via their pop-up store. The Fuelband, which is often compaired to the defunct Jawbone Up, is very similar to the FitBit (which I still think is the best device in the space - love mine!).

Here is a link to the exact position of the discussion on the Fuelband.

Host Jeff Jarvis describes, these devices as "the internet of things, and things tend to be you..."  At last year's Stanford Med 2.0 event, Dr. Bryan Vartabedian  described personal health devices as "An API into the patient." An API - application programmer's interface - is a term in computer programming and hardware which references a programmer's ability to connect with another program or device. The point Dr. V and Mr. Jarvis are marking is that quantified self devices give users and providers access to retime data about health and actives, without needing a lagging lab test or resource-intensive diagnostic study.

On episode 344 of the wonderfully nerdy Security Now podcast, host Steve Gibson discusses his penchant for "conducting experiments on [himself]." In 2009, Mr. Gibson, usually focused on technology security, released a special hour long discussion on his studies of vitamin D. This week, he briefly mentions an expriment he conducted on eliminating most carbohydrates from his diet.

Editorial note - I've discovered in my own move to a mostly vegan diet, there many differing opinions on what constitutes the perfect diet and just as many studies to back them up. That said, I'm not sure I completely agree every part of his food-related discussion with host Leo Laporte. Nevertheless, Mr. Gibson has an almost obsessive habit of regular blood draws and lab tests.

You and watch their discussion on dietary changes and how they affected his lab results here.

Security Now 344: Your Questions, Steve's Answers #139 - YouTube.

someone build this: put my tweets in my health record

There is a great deal of attention these days to the concept of electronic medical records (EMR). Sometimes we refer to them as electronic health records (EHR) or even personal health records (PHR). While there are semantic differences between each, the idea is the same: a complete, portable electronic snapshot of your health. At least that is the idea. In practice today we are really talking about an electronic record of your medical history. (notice I left out portable, complete and health). Enter the idea of accountable care. Many industry experts are already envisioning a near future when providers will move from reaction to proaction. Rather than being paid to treat the symptoms that walk in the door, doctors may get paid for keeping you out of the office. A practical example is obesity. Instead of being reimbursed to treat the side effects of obesity (asthma, diabetes, joint pain, etc), a doctor may get paid for helping a patient achieve a healthy lifestyle and losing weight.

There is still something missing from this equation. And that is where your social graph comes in. A lot of us do healthy things all the time. According to Foursquare, the geolocation based social network, I have "checked in" to my gym 57 times since early March. I have gone to the farmer's market 15 times this year. I have attended four medical education seminars (ok, those were work-related, but I still learned something). Here's the rub, my doctor doesn't know any of that. If he is going to be responsible for my complete health, shouldn't those things factor in?

So, continuing my "someone please build this" series of blog posts, here is my latest plea: someone please build a conduit between my social graph and my health record. Let me opt in and chose which things I share online which should also go into my EMR to become available for anyone treating me. Tools like Foursquare come to mind as an obvious choice. Since it is based on location, it takes some of the effort out of participating; it just knows where you are. So when I check in to the gym, wouldn't it be great if my health record was updated too?

My good friend and HCSM guru, Dana Lewis pointed out the power of twitter hashtags. What if we were able to define a specific, personal tag, say #NicksHealth. Every time I want to include a twitter update in my health record, I tag it with #NicksHealth. Last week, I had surgery on my knee to repair an ACL injury. Every day for the first week, I took a picture and loaded it into Flickr, the social photo sharing site and posted a link to the picture to Twitter. If I were able to tag it with #NicksHealth then my doctor would have a series of images showing the progression of my range of motion, wound healing, etc. When I update my Facebook page with details from physical therapy, that information could populate my medical record, along with my Foursquare checkins - my doctor would see just how compliant I have been with his rehab orders.

It doesn't all have to be healthy. Providers need a complete snapshot of our lifestyles if they are going to suggest a course of care. Perhaps through incentives, competition or other means, patients may be encouraged to also share things that are less healthy. "I ate a burger tonight, with fries…and bacon…lots of it. #NicksHealth" - My doctor should probably know how often that happens in relation to my trips to the gym.

There are, of course, some challenges to this idea; including the burden of combing through all the data. Physicians may already feel like they have information overload. Without an accountable care model in place today, there is not much to entice them to pour over patients' social graphs. In time, we will also need software that can automatically sift through the updates and present them in a meaningful way to physicians. However, the first step remains building the connection.

Every major social network has an API, or Application Programer's Interface. APIs are a way to move data into and out of systems. If you use a twitter client like Tweetdeck or Twitter on your iPhone, you are using the Twitter API. Health providers, when considering their online offerings, would be wise to build in API functionality to online health portals.

Let people chose which data they want to share with their medical record. Providers can incentivize participation through reduced co-pays, social competition, etc. In return they get a rich flow of lifestyle information. When accountable care, meaningful use, EMRs and social graphs come together it will be a win for us all.

someone build this: Foursquare for Doctors

The genesis of this idea came out of the Healthcare track of the C2C US/Russia Civil Summit that I participated in in June 2010. During a discussion around the use of social games, Dr. O Marion Burton had a lightbulb moment. He piped up with, "oh wow! how cool would it be to show off that I used a cheaper med and had better results!" I have been taken with the idea since that conversation. Since I am not a coder, here is my plea: someone help build this. Imagine a social site, a game of sorts, that rewards doctors and clinicians for improving outcomes, reducing costs and improving a patient's experience. Docs are a competitive lot, they worked hard to get where they are and that kind of drive doesn't end at graduation from medical school. "Dr. Smith just prescribed a less expensive alternative." Oh yeah? "Well, my patient just got out of the hospital a day under the national average length of stay." Can you see the peer pressure building?

Unfortunately this site doesn't exist...yet. Imitation is the sincerest form of flattery right?

Have you checked out the Foursquare social network? It is a social game, you (or rather your GPS equipped mobile phone) tells Foursquare where you are and Foursquare tells your friends. If you are out on the town and want everyone to get together at your favorite watering hole, you log into Foursquare, update your location and blast a note to your friends.

The game part comes into play in two ways. First, if you check into a place multiple times you may become its "Mayor". Savvy restaurants and businesses are rewarding mayors. In early 2010, Starbucks began offering Mayors a $1 discount off Frappuchinos. The second part of the game are the badges. You get badges for anything from checking in after 3:00AM (School Night) to checking in near the water (On a Boat). Think of them like Girl or Boy Scout merit badges, only, well, internetier.

Back to our medical example

Patient care is not a game and to create a social site that does not trivialize it takes tact. However, there is nothing wrong with a little healthy competition. The Federal Government's CMS website offers good data on how one hospital stacks up against another; and it is fairly easy to read….if you work in healthcare and spend your time digesting these kinds of things. I am not convinced that the average consumer wants to suss out the percentage difference between two providers (although the site does a nice job of using plain language).

What I am suggesting - no - begging someone to build is a site that is relevant to both clinicians and the public. Think: Foursquare for doctors. Write a script for a generic med three times, get a badge. Have a better than average outcome, get a badge. Become the mayor of wherever you attend CME courses. Doctors could follow each other and would see what their peers are up to. When Dr. Jones writes a generic script three times, Dr. Smith might ask him which med it was, what the differences are, why Dr. Jones prefers it, etc. The professional interaction does not have to happen on the site. The site is simply a way for docs to encourage each other to improve care. Patients can follow along too. You could visit your doctor's page and see what badges they have. Looking for the best surgeon? Find the one with the "10 complication free surgeries" badge.

I'm not much of a coder and don't have an ability to produce great design (although I did the fancy syringe badge for this post, pretty good huh?). So please… someone build this!