Nike+, 23 and Me and OpenNotes: Current directions and controversy in personalized medicine

Nike plus run report

Self-Tracking for Behavior Change

I just invested in a Nike+ Sport kit, which, though they have been around for a while, just peaked my curiousity thanks to my reading of The Decision Tree. The author of that book, Thomas Goetz, points out that one of the most effective ways of motivating people to change their behaviour is to get them tracking their habits. For Weight Watchers, it’s points. For Nike+, it’s the distance and pace of your running.

All the Nike+ system is is a little doo-hickey that plugs into your iPod nano, and another little one that you stick in your shoe. I wasn’t too excited about switching shoe brands, so I hacked my Mizuno shoes that I know and love. But you can read about that elsewhere.

Once calibrated, the system is pretty slick. You can select a workout based on time (eg. 30 minutes), distance (5k, 3 miles), calories or free form. Then you pick some tunage to listen to while you run, and off you go. I have mine tracking in kilometers, and a kind voice pops up every once in a while to say “.5 k completed” or “300 meters left.”

When you’re done, you go home and sync your iPod and it zaps you out to nikeplus.com where your data is waiting for you to review. You can log a couple things yourself like how you felt, what the weather was like and the surface on which you were running. A graph of your pace shows how inconsistently fast or slow you were gadding about.

Other cool features:

  • Goals: Set personal goals for distance, pace, etc.
  • Nike+ Coach: training programs for you to follow to prepare for a race distance. This is hands-down my favorite feature of Nike+ so far. I have wanted to train for a half-marathon and went looking for a program but came back disappointed in the price and questionable quality of the programs online.
  • Challenges: Other users of Nike+ create public goals and challenges for you to join and run along with them. Probably not for me, but a nice way to “socialize” the system.

I hope that Goetz is right and Nike+ gets me out a little more often. He argues that systems like these are often effective for getting people to change to healthy behaviors (link [1] to the AJPM study mentioned in that post) because they serve as personal motivators. Being able to systematically record your runs and easily watch your progress over the lifespan of your exercise program is certainly motivating for me.

23 and Me, Navigenics and personal genomics: Empowering or Frightening?

23 and Me instructions

Another step farther along the personalized medicine path is the idea that you can now pay a company something like 500 bucks for a little vial into which you spit. In exchange for the vial of saliva, the company will give you results on your DNA, including, but not limited to, results that may indicate your relative risk level for breast cancers, heart disease or other conditions like high blood pressure and high cholesterol.

Currently, there is no FDA regulation on these services, and many people worry that just handing out genetic results willy-nilly is irresponsible and often doesn’t really apply to the clinical setting [2] anyway. Goetz doesn’t think so but some doctors [3] and scientists do. Typically the results of genetic testing are given to patients in the presence of a physician and/or genetic counselor. And just today, the results of a federal “sting” have uncovered some wildly unscientific claims being put forth by customer service reps over the phone from these companies and the smell of blood over these unregulated services is in the air.

Surely, the untrained and quack-like claims coming from company representatives is reprehensible and needs to be stopped immediately. Nobody (especially a company that doesn’t even test for BRCA variance) should tell you that you are pretty much guaranteed to get breast cancer because the plain fact is, nobody truly knows. That being said, we should all learn how to accept risk of disease as we age, because it is inevitable. And the more we know about ourselves, down to the genetic level, the better off we will be.

OpenNotes and doctors orders

Open notes logo

The concept of knowing more brings me to my final point about today’s medical information landscape (though there’s always more to discuss). Recently, a pilot project [4] of about 100 physicians signed up to agree to share their notes with their patients via an online Web portal system. Though patients do finally have the “right” to view their doctor’s notes (and my doc at UBC took to writing the notes with me at the end of our appointments to make sure we agreed), the practice isn’t standard and varies typically on the attitudes and relationship of the physician, patient and medical institution.

OpenNotes is seeking to change that by actively inviting patients to review their doctors notes after every visit. By sharing these notes it is possible that patients will feel more a part of their own health trajectory, but as the WSJ points out, it may be troublesome for some people (what would you think if you saw “anorexic” in your file?).

But with the ability for patients today to track and maintain health profiles in any number of different ways (including the Personal Health Records of Google and Microsoft) why should the subjective data from doctor’s notes be any different? They may be scary in a similar way that personal genomics may be: unfamiliar language mixed with shadowy risks and unlikely but distantly possible outcomes. But they also level the playing field between doctors and patients.

Given the relatively undisputed idea that patients today may choose between treatment options with the help of their doctors, we need all the information they have to be able to make that kind of decision responsibly.

Moving forward

image of potatoes evolving into Mr. Potato Head

@ePatientDave at e-Patients.net is a participant in the OpenNotes program and it will be interesting to watch his and others’ reactions to the program. We can hope they are mostly positive and that in a year’s time, the program will be continued and expanded. Until then, the rest of us will have to rely on educating ourselves and our friends, and trying to stay healthy and motivated in the process. I’m looking forward to the challenge.

References

  1. Hollis JF, Gullion CM, Stevens VJ, Brantley PJ, Appel LJ, Ard JD, Champagne CM, Dalcin A, Erlinger TP, Funk K, Laferriere D, Lin PH, Loria CM, Samuel-Hodge C, Vollmer WM, Svetkey LP; Weight Loss Maintenance Trial Research Group. Weight loss during the intensive intervention phase of the weight-loss maintenance trial. Am J Prev Med. 2008 Aug;35(2):118-26. [Pubmed]
  2. Hunter DJ, Khoury MJ, Drazen JM. Letting the genome out of the bottle–will we get our wish? N Engl J Med. 2008 Jan 10;358(2):105-7. [Pubmed]
  3. Eng C, Sharp RR. Bioethical and clinical dilemmas of direct-to-consumer personal genomic testing: the problem of misattributed equivalence. Sci Transl Med. 2010 Feb 3;2(17):17cm5. [Pubmed]
  4. Delbanco T, Walker J, Darer JD, Elmore JG, Feldman HJ, Leveille SG, Ralston JD, Ross SE, Vodicka E, Weber VD. Open notes: doctors and patients signing on. Ann Intern Med. 2010 Jul 20;153(2):121-5. [full text]

Further reading

  • Chopra D, Ornish D, Roy R, Weil A. ‘Alternative’ Medicine Is Mainstream. Wall Street Journal; 2009 Jan 9. [link]
  • Dobbs D. The Science of Success. Atlantic Monthly; 2009 Dec. [link]
  • Lee SS, Crawley L. Research 2.0: social networking and direct-to-consumer (DTC) genomics. Am J Bioeth. 2009;9(6-7):35-44. [Pubmed]
  • Ransohoff DF, Khoury MJ. Personal genomics: information can be harmful. Eur J Clin Invest. 2010 Jan;40(1):64-8. [Pubmed]
  • VanWormer JJ, Martinez AM, Martinson BC, Crain AL, Benson GA, Cosentino DL, Pronk NP. Self-weighing promotes weight loss for obese adults. Am J Prev Med. 2009 Jan;36(1):70-3. [Pubmed]
Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s