Information is power!
You can’t control what you can’t measure!
Data = beautiful!
Such are the battle cries of the empowered self-tracker.
Far behind, bringing up the rear of the limping battalion in our technology-as-saviour ranks are many Real Live Patients and their physicians daring to pose a question that I like to ask of the devotees of the Quantified Self movement:
“But what are you actually going to DO with all your data once you have collected it all?”
If the information you’re capturing on your smartphone app or your WiFi-enabled scale or your health-tracking device means you’ll learn something important that you did not know before you gathered all the data – and if this will actually drive behaviour change or medical decision-making – then go for it.
For example, if you’re a person living with insulin-dependent diabetes, then careful daily monitoring can warn you of sudden blood glucose changes and help in the practical planning of your meals, activities, and what time of day to take your meds. But as internal medicine physician Dr. Jan Gurley likes to remind us:
“There is an old medical rule-of-thumb: don’t get a test if there’s nothing you’re going to do about the result.”
What if you’re like the Quantified Selfer who spent four years tracking his hour-by-hour stress levels, synched with his online calendar/GPS so he would always be able to tell precisely what he was doing at the exact moment when his pulse increased or his blood pressure went up?
What if you discovered (as he did by the end of those four years) that the two most problematic and stressful activities were being stuck in rush hour traffic and attending work meetings? What would you actually do differently (if anything) if you finally found out what the rest of us could have already told you on the spot before you wasted four years of your life tracking all that stuff?
What if author/professor/statistician W. Edwards Deming was correct? He warned:
“Information is not knowledge.
“The world is drowning in information, but is slow in acquisition of knowledge.”
And what if all that health information you’re given just makes you feel anxious or even obsessive?
Consider this experience of a well-known U.S. heart patient and advocate Hugo Campos. Hugo is uniquely qualified in the topic of tracking one’s health indicators. Inside his chest he sports an ICD – an Implantable Cardioverter Defibrillator. He was diagnosed with a heart condition known as hypertrophic cardiac myopathy, a muscle thickening that makes it harder for the heart to pump blood and – worse – can put a patient at higher risk for sudden cardiac arrest.
So in November 2007, cardiologists implanted Hugo’s defibrillator, a battery-powered device that monitors his heart rhythm and can deliver a life-saving electric shock to regulate it if needed. Ever since, Hugo’s been enthusiastically lobbying on behalf of all ICD patients to have access to the data these heart devices are recording – info that’s so far been restricted to industry and health care professionals, not patients.
Hugo also owns a heart monitor app for his phone called AliveCor that is able to record his heart rhythms (EKG or ECG) including those known as premature ventricular contractions (PVCs) – commonly felt as a “skipped beat” or palpitation.
(Two no-tech fingers on the wrist, by the way, can also detect these rhythms).*
He‘s written previously about the occasional heart rhythms he’s captured with his AliveCor (Cardiologist and AliveCor founder Dr. David Albert has teasingly dubbed Hugo an “electrocardiographic exhibitionist”).
But what Hugo reported one night is as telling a cautionary tale on the pitfalls of personal data collection as I’ve seen yet. His AliveCor has the unique ability to share a person’s EKG readings with a physician – or on social media to the whole world. Here’s an excerpt from Hugo’s story as he kept sending out his single-lead EKG readings live on Twitter:
And finally, my own question:
The AliveCor device has been widely gushed over in online tech hypemeister circles, yet experiences like this one may reveal an unintended consequence of such individual data collection: the unsettling tendency towards obsessive anxiety inherent in tracking health indicators.
And as cardiologist Dr. Wes Fisher observed recently:
“Expecting a doctor to make urgent clinical decisions based on AliveCor, a single-lead EKG app, is of limited utility, in many (and maybe most) instances in my view, so patients should look at this device only as a convenient adjunct to more conventional medical care.
“While it might come one day, the AliveCor iPhone EKG has simply has never been tested for emergency use.”
Or consider the ultimate whiz-bang self-tracking health data: your personal genetic profile.
Originally focused on health, genetic testing has also moved into ancestry in a big way – including informing you what percentage of your genes comes from a Neanderthal heritage, which I suspect might make for what passes as cocktail party chatter if you ever run out of fascinating facts about yourself to share. National Geographic’s Genographic Project has so far analyzed the genetic markers of nearly 600,000 people since 2005. The genealogy-focused Ancestry.com’s AncestryDNA has more than 120,000 test takers in its records, and 23andme has over 200,000 so far.**
In March, the U.K.’s impressive “Sense About Science” campaign published warnings against expensive genetics tests that claimed to link people to history’s famous such as the Queen of Sheba or Napoleon. They call such claims “genetic astrology” because going back a few generations, everyone starts to look related.
And again, what are you actually going to do with this breathlessly intriguing awareness of your Neanderthal-ness besides boring your friends?
Let me save you some cash by letting you know that, according to Germany’s Max Planck Institute for Evolutionary Anthropology, anyone who isn’t African probably shares about 2% to 3% of his or her genes with Neanderthals.
Over at 23andme, $99 will buy you genetic testing that provides more than “200 health and traits reports” based on personal DNA – along with an estimate of your own Neanderthal-ness. Tests claim to tell you your carrier status for 50 diseases and disease risk for 120 conditions – but what 23andme doesn’t tell clients is that a lot of these genetic traits and markers are based upon only one or two actual studies.* Scientists have raised questions about the accuracy of these tests, and in May 2011, a Dutch study claimed the tests were inaccurate and offered little to no benefit to consumers. UPDATE November 25, 2013: FDA shuts down 23andme sales of their home testing kits
As Dr. John Grohol, co-founder of the Society for Participatory Medicine, wrote earlier this year:
“Because of outstanding research issues, personal genetics is something of limited value. It can maybe provide you with a possible heads-up or warning about potential future issues in your life.
“Or it could give you information that only makes you more anxious.”
Even those living with diabetes – people who for decades have a history of daily self-tracking of their health indicators – may view relentless monitoring as a troublesome burden. Thomas Goetz described it so well in The Atlantic recently in his article, The Diabetic’s Paradox:
“Self-monitoring for diabetes is an unremitting and unforgiving labor, and the combination of these creates a constant sense of anxiety and failure.”
It’s hard to escape the irony of so many Real Live Patients who would like nothing better than to avoid the sense of “anxiety and failure” that can accompany the very same voluntary self-tracking habits that the worried well just can’t get enough of.
And as Donna Cusano (who casts A Gimlet Eye on health technology over at the Telecare Aware site) wrote:
“Quantified Selfers are totally unconscious of the fact that the market which can most use a tracking system is the least likely to use one!
“And the self-absorption of some QS adherents has a whiff of stark raving narcissism about it all.”
Perhaps the last word should rest with the French philosopher Michel Serres, who once wrote:
“Neither information nor a drug fix ever gives any happiness when you have it, but will make you miserable when you don’t.”
- Self-tracking device? Got it. Tried it. Ditched it.
- “Fewer numbers, more life experiences”
- When the elephant in the room has no smartphone
- Digital temptations: “Quantifying, tracking or gamifying everything”
- When does mindfulness become mind-numbing?
- Does knowing change behaving?
- The Quantified Self meets The Urban Datasexual
* And for more info on premature ventricular contractions, read Dr. John Mandrola’s excellent overview on PVCs.
** UPDATE November 25, 2013: FDA orders 23andme to cease marketing of screening service.
** UPDATE, March 15, 2018: Since 2013, 23andMe spent nearly $1.5 million on lobbying government regulators (including a lavish fundraiser for Barack Obama in May 2014, tickets costing up to $32,400 each). That same year, 23andMe gained FDA approval to market its genetic tests for 10 diseases or conditions, including Parkinson’s, Alzheimer’s and celiac disease. In 2015, 23andMe received limited FDA authorization to tell customers if they carried genes for diseases that could be passed on to their children, and identify genes for certain rare diseases. .