The “good,” the “difficult” and the “reality”: patients in the digital age

All opinions are my own and do not necessarily reflect those of Novo Nordisk.

With apologies to Sergio Leone.  And to you, for making you read that really bad pun.  Just move along.

In an engaging and thought-provoking perspective piece in the New England Journal of Medicine, Dr. Louise Aronson described her experience in getting treatment for her father, who was suffering from low blood pressure and other health issues.  Her father was admitted to the hospital and went through examinations and fluctuations in his health during his stay.  He seemed to stabilize but then his blood pressure dropped again and Dr. Aronson asked for someone to come and check on him.  The staff was polite but non-committal and she decided to perform an exam on him herself to check if he had internal bleeding.  He did, she obtained evidence, and her father received rapid care to prevent further blood loss. 

She relayed this story in the context of how health care providers often bin patients and their support networks into “good” and “difficult” categories, based on how much and how often those patients acquiesce rather than challenge or even seek information about ongoing treatments.  As she describes it, the staff “were polite, but their unspoken message was that they were working hard, my father wasn’t their only patient, and they had appropriately prioritized their tasks. ” Her message was that the medical profession needs a cultural shift,in which patients and their families whom are more actively engaged in their care are seen as an asset, not a detriment to medical practice.  She also suggested some practical elements that would help this, including tracking more clearly when patient engagement occurs and rewarding it through changes in billing codes and practices. Continue reading

Internet access is a public (and private) health issue

All opinions are my own and do not necessarily reflect those of Novo Nordisk.

If the Founding Fathers had lived today, they would surely have included internet access as one of our inalienable rights.  No, scratch that, because if they had lived today they would have used Google Docs to crowdsource the Declaration and the result would probably have been much more generic and middle of the road than it actually is.  Also, the Declaration would also have been limited it to about 500 words so readers wouldn’t get bored and surf somewhere else, and it would have had embedded GIFs. Preferably animated.

Still, the ability to access the internet and everything that comes with that is, if not a right, an incredible advantage.  So I was stunned when I read in the Seattle Times the other day that a significant fraction of people in the US–about twenty percent–have little to no internet connection, although those numbers have recently begun to creep up, presumably due to smartphone uptake.   But of course, being a good Seattlelite with a liberal bent, my next reaction was to say, well, let’s not rush to judgement or conclusions.  Maybe those people just don’t want the internet.  Not that there’s anything wrong with that…

Except the article goes on to say that while seniors generally did not feel they were missing anything, the majority of other respondents did feel they were missing something important and were being left behind because of their limited access.  So it’s not a life decision; it’s a question of cost, access and education. Continue reading

Enter citizen science

All opinions my own and do not necessarily reflect those of Novo Nordisk.

h/t to @engagedethics for the heads up.

What do you think of when you think of citizen science?  Maybe dads buying Geek Dad and helping their kids build Lego robots that can manipulate a lego binary clock.  Maybe people tracking their health, thoughts, bodies, or other things in a really granular way in an effort to get at their quantified self.  Maybe hobbyists building and flying drones to sample atmospheric particle levels or track neighborhood traffic patterns.  Maybe patients groups banding together and funding research into cures, like the Cystic Fibrosis Foundation did with Kalydeco.  Maybe birdwatchers helping researchers track the migration patterns and populations of North American birds.  Maybe it’s something else, something you know about or have heard about or are planning to do right now.  Choose any or all of the above and you’re completely right.

Because citizen science, like a lot of movements these days, isn’t something legislated or codified or directed from on high. It’s something organic and crowd-based and bottom up, and it’s going on everywhere.

This is the world that’s being enabled by technology.  Whether it’s 3D printing, DIY Bio, computer modeling, personal monitoring or other kinds of tools, the barriers to experimentation are falling rapidly, and interest in figuring stuff out is on the rise.

The Citizens Science Association has been working on ways to support this new way of doing science.  They’ve been convening groups to look at topics like Governance, Conferences, ways to publish, and ways to communicate via other means.  There will be a webinar on September 17th to report on progress and it sounds like a worthwhile thing to listen to.  I haven’t been involved in the Association, but I’m planning to listen in.  Because technology keeps lowering the barriers to entry, and I’m really excited to see what comes out.

How do you take a cheetah’s temperature?

All opinions are my own and do not necessarily reflect those of Novo Nordisk.

The answer, of course, is very carefully (ba-dum-bum!).

Okay, having gotten that horrible joke out of the way, it seems like people are really interested in cheetahs and how they hunt.  I’ve written about monitoring cheetah hunting behaviors before and the implications that technology has for future data gathering and analysis (see here, here and here).  The most recent addition to what seems to be a growing canon of testing and abolishing cheetah hunting myths was published recently in Biology Letters (abstract only; rest behind a paywall.  But see here for a more extensive summary of the paper).  In this work, the researchers report using temperature sensors to test the hypothesis that cheetahs are unsuccessful in some of their hunts because they overheat.

This seems like such a nice, neat story.  That’s probably one reason why it’s taken so long to actually test it.  The story goes something like:  Cheetahs are the fastest land mammals.  Everyone heats up when they run.  If cheetahs run the fastest, they must heat up the most.  Therefore, heat is the gating factor for Cheetah hunting.  Stories are so appealing!  But that appeal, in satisfying our sense of order, can keep us from looking under the hood and asking questions.

Luckily for us, these researchers did.  Robin Hetem and colleagues found that cheetah temperature did not increase substantially during hunts, whether successful or not.  Oddly, temperature did increase after the hunt was over, and furthermore increased more for the cheetahs that were successful.  The study authors speculate that the reason was heightened awareness to scavengers who might want to steal the cheetah’s prey.

This study highlights the value of remote sensing and our rapidly increasing ability to both monitor and store data continuously, and thereby test our notions of the world.  Data of itself isn’t good or bad, but boy is it useful.

Major League Baseball should be all over the quantified self movement

All opinions are my own and do not necessarily reflect those of Novo Nordisk

Baseball players break down.  Their performances fluctuate.  As a group there are some interesting generalities with respect to how pitching, hitting and fielding change with age.  But the error bars are huge.  There are many things we still don’t know about baseball players, about why one prospect hits the ground running and another flames out.  And we also don’t know if there is any way to know, since the task of putting together the skills needed to play major league baseball may be one of the most complex of the major sports, and understanding complexity is hard.

But it seems worthwhile to give it a try.

The Mystery of the Missing Ligament

Let’s talk about R.A. Dickey for a minute.  Not because he’s a highly interesting human being, although he is.  And not because he’s a knuckleballer, which is fun and interesting due to rarity and the entertaining sight of six foot athletes flailing at baseballs traveling with the flight path of a drunken small-nosed bat.  But rather because he was drafted in 1996 in the 1st round by the Texas Rangers, and only during his physical workup was it discovered that he was missing a key ligament in his arm.  The Ulnar Collateral Ligament (UCL), to be exact.  Without which, it is assumed, a pitcher cannot pitch. Continue reading