— intriguing question raised by Emily Kramer-Golinkoff on Twitter. I’d love to hear if people have experiences or advice to share in the comments.
I wonder if the answer depends on how visible someone’s tracking is or whether they share their activity with their loved ones.
If you are new to the idea of self-tracking, you may want to check out the Quantified Self movement and my own contribution to understanding the phenomenon: Tracking for Health (a Pew Research report released in January 2013).
Basic findings: 7 in 10 U.S. adults track a health indicator for themselves or a loved one.
- 60% of U.S. adults say they track their weight, diet, or exercise routine.
- 33% of U.S. adults track health indicators or symptoms, like blood pressure, blood sugar, headaches, or sleep patterns.
- 12% of U.S. adults track health indicators or symptoms for a loved one.
However, their tracking is often informal:
- 49% of trackers say they keep track of progress “in their heads.”
- 34% say they track the data on paper, like in a notebook or journal.
- 21% say they use some form of technology to track their health data, such as a spreadsheet, website, app, or device.
This question allowed multiple responses, but in sum: 50% of trackers record their notes in some organized way, such as on paper or using technology, and 44% of trackers do so only in their heads.
This is the first national survey measuring health data tracking, which has been shown in clinical studies to be a tool for improving outcomes, particularly among people trying to lose weight or manage a chronic condition:
- 46% of trackers say that this activity has changed their overall approach to maintaining their health or the health of someone for whom they provide care.
- 40% of trackers say it has led them to ask a doctor new questions or to get a second opinion from another doctor.
- 34% of trackers say it has affected a decision about how to treat an illness or condition.
What do you think? Are you aware of people in your family or social circle who self-track? If you track, do you talk about it with friends and family? What are some of the questions or reactions you’ve gotten from loved ones? Or from anyone, if your tracking is visible?
My response comes from an initial reaction to the word “handle,” a loaded word — a cousin, I suppose, of compliant. Emily lives with CF, which requires a ton of tracking. Initially, her parent(s)s/guardian(s) took on that responsibility. Over time, that transitioned to her. All the while, her care team also tracked.
In answering the question, “How do I handle?” I’d first thank Emily for her concern. I’d want to know more: Is the person in imminent danger? Does the person understand his/her diagnosis? How much tracking is essential? What’s the easiest way for this person to handle that task? In other words, meet the person where he/she is.
Has the person asked for your help? (I’ve been there, and not in a good way!) If not, what’s the best way to engage? Do you have a natural ally? Will the person see a benefit from whatever the tracking is, or will it feel like another burden?
My husband loves to write down what he eats. He weighs himself every day. I wing it and use Susannah’s brilliant “Are these pants too tight?” metric. He fills a pill “minder” every week for his statin and baby aspirin. I take more meds but for me, life is too short to be putting pills in little compartments. I just line the bottles up.
But both of us have our medical records online — and I’m the one who charts my various values. Go figure.
So in the case of your loved one, Emily, if he/she is open to talking, find out what would work for her, and help her get started. Encourage her, but in the end, it will be her system.
I want to chime in and clarify my original question. I’m a very active health tracker – part by nature and part by adaptation, I think. As someone with advanced Cystic Fibrosis and Cystic Fibrosis-Related Diabetes, my proclivity towards self-tracking proves very helpful for my own health management.
As a natural tracker, I can’t help but also track indicators of my loved ones’ health. That can create hard-to-navigate situations when I identify a negative trend for a loved one that doesn’t self-track – or at least not openly.
It’s a very fine balance between caring and nagging, offering a helpful impetus for behavior change and being purely counterproductive. I imagine many natural self-trackers face this predicament and I am curious how they handle it.
Emily, perhaps identify a positive that you can share with the person. “I like how you XYZ. Could you write down where you found it? (Or did it? Or made it?)” That might open up a talk about keeping track of something — you write down, or catalog, tips, recipes, sources — and your meds, symptoms. In other words, a natural conversation first, rather than, “I’m concerned about … ” or worse, “You need to … ”
You’re absolutely right that caring and interfering can be a difficult path to navigate. Another suggestion would be to ask someone on your care team how he/she works with people with CF or diabetes who resist, or don’t see the point of, tracking.
Whatever, keep alert for signals of what works for this person for other things. Does s/he write down a shopping list on scraps or paper or on a real list, whether paper or phone or computer? How about keeping track of appointments? Is part of the issue “health literacy?”
I hope someone else chimes in, too.
Emily, thank you for the clarification, and Naomi, thank you for the insights!
I’m following this conversation in tandem with John Grohol’s essay:
The Black Box of You: Why the Quantified Self is so Frustrating Today
http://e-patients.net/archives/2013/04/the-black-box-of-you-why-the-quantifiable-self-is-so-frustrating-today.html
Another resource is Thomas Goetz’s excellent article and the 80+ comments it sparked:
The Diabetic’s Paradox: Health self-tracking is in vogue. But is it more of a boon or a burden?
http://www.theatlantic.com/health/archive/2013/04/the-diabetics-paradox/274507/
I’m staying tuned, learning from everyone who is more experienced than I am with self-tracking and behavior change.
Hello Susannah and thanks for running this intriguing question (although I shared the initial cringe of Naomi over the word choice, “handle” – as a person whose idea of self-tracking is just putting a little sticker on my bathroom calendar for each exercise day, I do NOT want to be “handled” by any well-meaning self-trackers around me!)
Thomas Goetz’s outstanding article (The Diabetic’s Paradox) has sparked not only comments in response to his original piece in The Atlantic, but on other sites where it’s being debated by the usual suspects: on one side, real live patients who “get” that paradox, and on the other, the techmeisters who just happen to have the superior app they’re eager to sell you for solving all your self-tracking problems, sounding very much like they have not bothered to even read the Goetz piece in the first place.
Linked In’s Digital Health group is a good example, with 91 comments so far: http://www.linkedin.com/groups/Diabetics-Paradox-2181454.S.229262068?view=&gid=2181454&item=ANET%3AS%3A229262068&trk=NUS_RITM-title