by Carolyn Thomas ♥ @HeartSisters
Shortly after arriving at Stanford University School of Medicine to attend the conference called Medicine X (“at the intersection of medicine and emerging technologies”), it hit me that I didn’t quite belong there. Maybe, I wondered, the conference organizers (like the profoundly amazing Dr. Larry Chu) might have goofed by awarding me an “ePatient Scholarship“ – rather than a more tech-savvy, wired and younger patient in my stead.
Please don’t get me wrong – I was and still am duly thrilled and humbled to be chosen as one of 30 participants invited to attend MedX as ePatient scholars, generously funded by Alliance Health based on meeting selection criteria like “a history of patient engagement, community outreach and advocacy”.
But almost immediately, I started feeling like a bit of a fraud.
At Medicine X, the entire first day’s agenda, for example, focused on the concept of self-tracking. Mobile technology means we can now whip out a smartphone to keep track of our weight, our mood, our sex life, the food we eat, how much we exercise, how well we sleep, or the number of computer keystrokes we rack up each day.
The MedX conference kickoff speaker on self-tracking was the delightful Susannah Fox, Associate Director of Digital Strategy at Pew Internet and American Life Project, a self-described “internet geologist.” Susannah made me feel a bit better by pointing out her own favourite self-tracking tool – the skinny jeans in her closet.
Every woman knows that one’s skinny jeans represent an accurate (albeit low-tech) weight assessment tool. And maybe skinny jeans are indeed every bit as useful as tracking weight on a smartphone health app like DailyBurn, or on Fitbit’s Aria Wi-Fi Smart Scale. The latter can not only weigh you, but can then post your scale numbers directly online to your Twitter followers. (This, by the way, might just be the health app equivalent of tweeting your morning Starbucks order to followers who apparently are desperately interested in your every waking moment).
There’s an entire Quantified Self movement of hobbyists who enjoy tracking what they’re thinking or what they’re doing or what they’re thinking about doing, a number of whom we heard from at MedX. Quantified Selfers have a website, they plan meetups, and apparently had a swell time at last month’s annual conference (also in Palo Alto) sharing many trackable details about themselves that could possibly make your head explode if you are not a bona fide Quantified Selfer.
The QS conference highlights included self-tracking reports on things like caffeine intake, heart rate, cognitive skills, geographic location, facial expressions, hydration levels, money saved/spent, ambient noise level, light exposure and vocabulary size.
According to their website, 80% of QS types are male. Some have health issues they are keeping track of (diabetics who monitor their blood test results, for example) but most do not.
My overall observation at MedX – and one that I did not hear addressed by any of the conference speakers – was that there’s likely a big fat difference between the worried well, that highly engaged community of technology mavens who enthusiastically track their personal data just because they can, and actual real live sick people coping with serious chronic disease every day who lack the energy/ability/will to commit to self-tracking in any kind of meaningful fashion.
I am one of them. I consider myself an engaged patient, but I do not own a smartphone, a tablet, or an iPad – nor, as a person with a debilitating chronic illness living on a modest disability pension, could I afford them.
One wonders if anybody in the QS world or in health care tech startup companies is even remotely aware that there are actually patients like me out there.
(And speaking of startups, does everybody in Palo Alto own one? Even the kid on the bus who was our Silicon Valley Tech Tour guide – a fourth year Stanford student – has his own startup, for Pete’s sake!)
Pew Internet’s own studies on the general online activities of people living with a disability suggest that those who are most likely to be diagnosed/living with chronic disease/disability may indeed be least likely to turn to technology to enhance health outcomes. For example:
- One in four adults lives with a disability that interferes with activities of daily living.
- Disability is associated with being older, less educated, and living in a lower-income household.
- 58% of disabled patients are age 50 or older.
- Internet use is statistically associated with being younger, college-educated, and living in a higher-income household.
- Just 54% of adults living with a disability use the internet, compared with 81% of adults who report none of the disabilities listed in PEW surveys.
- Only 13% of those ages 65 and older own a smartphone.
In another report published in Journal Watch Emergency Medicine, a disturbing number of Chicago patients being discharged from hospital with both oral and written care instructions do not understand their discharge instructions. While the tracking technology folks featured at MedX may view such patients as a potential target market ripe for the picking, researchers describe “a worrisome deficit in patients’ understanding of how to care for their illness at home and in what circumstances they should return to the Emergency Department”.
Why would we suddenly believe that patients like these will somehow adopt emerging health technology when they cannot/do not comprehend “individualized in-person discharge instructions as well as written instruction sheets specific to their discharge diagnosis”?
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!’
David Whelan of Forbes turned his own gimlet eye on the hype-meisters of health care tech startups who “overpromote into a stratospheric hype zone of self-importance”. Their technology, warns Whelan, “will not help fix the health care system” – despite the claims of those paid to promote it. He adds:
“It’s true that you can point a finger at health care and say it lacks technology. But it’s not because the tech doesn’t exist. It may be that technology doesn’t really fit.”
The “Next Big Thing” in emerging technology might have nothing to do with health care at all, according to The Wall Street Journal’s 2012 ranking of the top 50 venture-capital-backed companies – the first year that a health care company did not top the ranking. For example, last year’s WSJ list-topper (Castlight Health Inc.) dropped out of the top 50 entirely as “the health care industry in general has fallen out of favor with venture capitalists.”
There was a very large elephant in the Stanford University conference rooms at the Medicine X conference, and it’s only now that I have recovered enough to raise one tentative hand in the air to interrupt the self-congratulatory high-fives of health tech insiders – the so-called urban datasexual.
Here’s an example: one self-tracker reported his gee-whiz revelation after four years of careful tracking (!) that traffic jams and meetings raise his stress level – this according to his wristwatch sensor that monitors heart rate and overlays said data on his Outlook calendar. Please note: I would have willingly told him that for free before he shelled out $200 for the new watch.
Consider also the example of Larry Smarr, a very sharp astrophysicist with a background in supercomputing and founder of the Calit2 research centres located at both UC San Diego and UC Irvine. He’s been a committed self-tracker for about five years. Larry recently told an Orange County Register interviewer that he wears a Fitbit and Zeo on a daily basis, and a heart rate monitor when exercising. He also analyzes his own stool samples – I am not making this up! – by freezing and then sending them off to labs to investigate the contents, all in the pursuit of science and insights about his own fascinating self.
The trouble is, Quantified Selfers like Larry may give the casual observer reason to suspect that they are somehow living at the intersection of geekdom and nerdville.
Or, as Telecare Aware’s Donna Cusano more bluntly concludes:
“The self-absorption of some QS adherents has a whiff of stark raving narcissism about it all.“
Then there’s Massachusetts physician, author, researcher and UMass professor of epidemiology Dr. Marya Zilberberg who has observed:
“The self-monitoring movement is just another manifestation of our profound self-absorption. When you measure something, presumably you have to react to it.
“Is the hope that this constant self-monitoring will change our behavior? Just look at how decades of focus on diets and weight have fared.
“In fact, it feels to me that this fixation on blow-by-blow narrative of our ‘health’ is quite the opposite of what real health looks like.”
And as one MedX attendee mused on Twitter:
“Why do we think self-tracking health devices will work when mirrors and bathroom scales have so far failed?”
Besides, for the average person (e.g. those who are not astrophysicists with a keen interest in collecting and analyzing their own stool samples), we know that only 5% of mobile phone applications – including health tracking apps – are still in use 30 days after downloading.
Aside from the tech-savvy participants at Medicine X, self-tracking seems to be so far largely limited to early adopters: technophiles, elite athletes and patients monitoring chronic health conditions.
As a dull-witted heart attack survivor, I’m most interested in this third group. Yet paradoxically, I’m also realistically cynical about this group’s wholesale adoption of self-tracking. I see significant challenges in convincing people like me who are living with a debilitating chronic illness to somehow embrace technology as their digital saviour.
Dr. Joseph Kvedar, a physician and founding director of the Center for Connected Health at Harvard Medical School, believes that physicians need to turn “as many of our patients as possible into Quantified Selfers” – but he has also candidly admitted some of the very real challenges in doing so. He describes the gulf between Quantified Selfers and average patients like me:
“One explanation could be that managing chronic disease can be complex and too overwhelming for some patients to take on anything more.”
Thus Dr. K exquisitely grasps what many Quantified Selfers do not.
While individual outliers may have enthusiastically embraced the self-tracking trend (we heard many of these patients and doctors onstage at MedX), the reality is that many more have not and will not.
As a survivor with ongoing cardiac issues, I call this the “One Damned Thing After Another” phenomenon, when simply taking out the recycling bin may feel like far too much for me to manage on a bad day. For more on this phenomenon, see: Living With the Burden of Treatment or Healthy Privilege: When You Just Can’t Imagine Being Sick.
How are health tech startups planning to address this particular demographic? Or are they even going to bother?
It’s health care conference season out there, and techies are showing off their wares in full force – not just at Medicine X at Stanford. For example, at San Francisco’s Health 2.0 conference this week, Dr. Danny Sands (founder and former president of the Society for Participatory Medicine) just tweeted this:
And as one similarly concerned physician said to me while watching yet another particularly enthusiastic demo of yet another life-changing tracking app during MedX :
“Are these Quantified Selfers talking about real patients?”
© 2012 Carolyn Thomas – Heart Sisters
♥
PS to Dr. Larry Chu: Lest I appear to be an ungrateful Luddite – ooops, too late! – I would like to add my sincere appreciation for the opportunity to visit your beautiful university, to marvel at the kindness and hospitality of your whole Stanford AIM team in organizing a medical conference unlike any other, to meet so many committed health care professionals from all over the world who view patients as true partners in our journey together, and to witness with my own eyes so many inspired and inspiring patients included onstage, in the audience and at the microphones. Thank you for this!
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♥ This article was republished as a guest post on TeleCare Aware and also made the 2012 Top 10 Most Read Heart Sisters posts list
NOTE FROM CAROLYN: I wrote lots more about adjusting to life as a heart patient in my book, “A Woman’s Guide to Living with Heart Disease“ , published by Johns Hopkins University Press in 2017. You can ask for it at your local library or favourite bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher (use their code HTWN to save 20% off the list price).
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See also:
Self-tracking Device? Got It. Tried It. Ditched It.
An Open Letter to Mobile Health App Developers and Their Funders
Self-Tracking Tech Revolution? Not So Fast…
If You’re Clueless and You Know It
Living With the Burden of Treatment
Healthy Privilege: When You Just Can’t Imagine Being Sick.
Why 74% of Smartphone Apps are Dropped by the 10th Use
The Quantified Self Meets the Urban Datasexual
Seeking Social Solace: Why Aren’t Heart Patients Online?
Dr. Sherry Turkle: “I Share, Therefore I Am”
- How a Heart Attack Turned Me Into an “Information Flâneuse”
- News Flash: Smartphone Users Obsessively Check Their Devices
- Why You Should Put the Damned Phone Away
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Q: Am I off-base here? Is online self-tracking the future of health care?
,
Heart Sisters 
Carolyn, I just read this post from Chris’s Facebook and left the following comment.
This is such a great post. I’m lucky enough to be one of those people described, but own a smart phone. Of the tracking apps presented/talked about at MedX, I am only using two these days. I started using Crohnology prior to MedX and continue to use it to assign a number 0-100 of how I feel. One reason I still use this is because they automatically text me each week and I can respond via text (this can be done via dumb phone). I have not printed out a chart of my symptoms to show my doctor. I got a Fitbit a few months ago and use that to encourage me to walk more and also track my sleep. I do not print out my sleep graphs, but I have checked the stats when switching medications (some are for sleep directly or indirectly).
I like technology. What I’d like to see is something that will help me manage my time, chores, medical appointments, and bills/insurance appeals. (This doesn’t have to be a single app – haha.)
Apps I’ve stopped using since MedX include those that involve food/calorie tracking, GPS-based running apps, and Health Tap (whatever their sales pitch was).
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Hi Carly and thanks so much for sharing your perspective here. Yours is a commonly heard story: so many downloaded apps seem cool at the beginning, but then hit a big slump in usage over time. But the health app hype we heard at MedX must make a startup’s technology sound as if theirs is really, truly The Next Big Thing in health care. All that hype in the air was exhausting…
I’d also like to see fitness app categories (calories, running, weight) distinct from true health apps (recording blood glucose levels for those living with diabetes, monitoring symptoms) – they are now usually all lumped together as ‘health and wellness’ aids.
Meanwhile, I too like to manage my time (with a clock) and my medical appointments (with a calendar) and chores (with a Post-It note reminder stuck on the bathroom mirror!)
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Technology is on the horizon whether we choose to embrace it or not, eg When automatic transmissions were introduced in our vehicles, there were likely many who said “This will never catch on!”
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Very true, Barbara!
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This is brilliant. You have put this message in such a way that it completely reflects my own frustrations with the “hype” out there. Well said. I’m not a heart patient but I do live with debilitating rheumatoid arthritis and a couple other chronic disease diagnoses. It’s really hard to explain to a (young, healthy) person who has no clue about this reality that self-tracking on a phone app is just another job on my already overwhelming daily to do list, as you say.
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Thanks for your comment, Kathlyn. Stay tuned for an upcoming posts here about “Healthy Privilege“ or “living with the burden of treatment“ and Dr. Victor Montori’s work at Mayo Clinic on Minimally Disruptive Medicine.
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When home computers first came out, we could never have imagined that they would become standard household items yes, even in the homes of seniors. I’d give smartphones another decade and by then they’ll be used by older people with chronic illness. Whether smartphone apps be embraced however is another story.
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Oh this post was music to my ears! Attending the QS conference the month before left me with such a similar aftertaste. Indeed, there was so much wonderful innovation, but it seemed utterly misdirected, at least from my vantage point as a, well for lack of a better word, ePatient.
Making the healthy healthier can be lucrative which is perhaps why the innovation starts there. But easing, alleviating or at the very least not contributing to the pain of the sick requires a different sort of commitment.
I speak from the experience of being an acutely sick patient who needed a tool to perform the task of recording my symptoms as requested by my doctor. I assumed there’d be an app for that, but there wasn’t, so I went about making my own. Because I was actively sick at the time, I knew *certain* things that a healthy person might completely miss…something as simple as not using sliders on a screen because they’re harder to activate (and require more thought) than a button.
Fundamentally, sick people are the LEAST likely to be self quantifiers. We just want to be able to bitch about traffic, buy groceries without fainting, and be annoyed at our kids like we used to! We, in fact, relish the thought of NOT obsessing about our health, to take it for granted like we do, say, gravity.
Thank you for bravely speaking to a pretty intimidating community (oh, those geeks are so young and so smart!!) and exposing a truth that must be acknowledged.
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Natasha, you have hit upon a brilliant point that I missed entirely in my post when you say: “We, in fact, relish the thought of NOT obsessing about our health.”
That is such an important reality. While young, healthy Quantified Selfers get excited about graphs and charts and devices to track anything remotely trackable, seriously ill patients yearn to NOT have to think about sickness, even for five minutes.
I wrote some time ago here about one afternoon seven weeks post-heart attack when, in a fit of pique, I marched around the apartment gathering all the get-well cards and beautiful floral bouquets – and I trashed the lot of them. I was sick of being a sick person, and wanted to erase any sign that some kind of invalid lived here. – It didn’t work, by the way!
P.S. I loved reading your story on your website. Congratulations and thank you!
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Carolyn – I had hoped to attend the MedX conference at Stanford, but alas, a bum shoulder prevented my attendance. As Chairperson of Project Access NW and having worked in health care for over 20 years, I agree with many of your comments.
I am the Chief Design Officer at Zale Transitions, and some of our clients are small start-up health technology companies. When I tell them that the real ‘extreme’ user of health care technology is NOT a 20-something year old, they struggle to identify with these users.
After they have paid for a business plan based upon meeting the needs of these real customers, some just throw their hands up and try to turn to the next VC who they hope will fund their technology without understanding the real needs and real customers in the health care market.
Other health tech companies I am working with are trying to make this transition, but this is a challenging transformation for a number of reasons.
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Interesting perspective, Zachary. Your clients’ response is why I hold out more hope for the adoption of digital tracking technology among elite or wannabe-elite athletes, the ones who cannot wait for the newest version of FitBit or larklife or Nike+ fuelband (described as “a statement of both fashion and tech savvy”) to be released. That’s where both the money and the self-absorption seem to live.
Hope your shoulder is better. We’re practically neighbours, by the way – I’m in Victoria.
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Hi Carolyn,
Since surviving my heart attack, going back to work full time, adjusting my work around my cardiac maintenance class, I find myself with little energy to feed myself in the evening, let alone do any form of tracking.
I really can’t see myself buying that and adding to the medical bills I already have. Good luck finding a heart patient with that kind of time and energy.
I enjoyed reading it,
Robin
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You made a good point, Robin – that lack of energy affecting so many of us (hard to describe to those who are not living with a chronic condition). At bedtime, for example, if needing to choose between spending time self-tracking or brushing my teeth, I’ll have exactly enough energy to do one – but not both.
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Carolyn, as usual you have made a direct ‘hit’ on our current state of health and our current lifestyles.
Instead of being ‘in community’ and talking to each other, we are punching buttons and waiting for smiley faces to tell us we are doing a good job. What in the world makes just doing the job and being rewarded by knowing you did it or having a friend make a comment that confirms what you already know.
I love some tech. I use some tech. But managing the many aspects of Coronary Artery Disease and DM and post CABG (open heart bypass surgery) requires more than a printed chart of my ‘okay-ness.’
I need people, colleagues, friends, family, and the world for my interaction. Not just a flat panel with buttons. Does that make me old or a failure? Absolutely not, but it makes me a good friend who can respond in an instant to anything you say to me … not just a pre-programmed, “Atta-boy!”
Lynn
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Thanks Lynn. And it also brings up the question of what we would plan to do with any tracking results that earned us an “Atta-boy”? Measuring assumes some subsequent action/decisions based on the measurement results, doesn’t it? Otherwise, why bother?
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Well, I figure that the real point of any of these apps is to make money, eventually, though it’s not impossible that a few genuine health benefits for someone just might occur along the way.
I’m not an obsessive tracker by nature, though have been forced to spend more time than I would like gathering and recording all sorts of data – mainly because of long experience with docs who dismiss any observation that is not measured and recorded over time. (Then there are the others who automatically slap on the Hypochondriac label. Oh well…)
Most of my data is of the low-tech variety, though at this moment I am wearing a (cardiologist-issued) 14-day cardiac monitor patch. For a while I’ve had questions about my heart rate (38 to 42 at rest) and recently bought a watch HRM that I check during and for a substantial margin before and after exercise. The information has been interesting, mainly reassuring (though it’s caught a few pounding leaps out of nowhere) as it appears that my heart rate increases appropriately, by and large.
Still, who would have guessed that my heart rate would drop while driving? Who, besides me, would care?
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Thanks for sharing here, Kathleen. But consider knowing that your heart rate drops while driving – what resulting changes in your behaviour might this knowledge bring? Would you have to stop driving? Take meds before getting into the car? Or does it even matter to your decision-making?
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Thanks for picking up on that, Carolyn. I have no idea what it might mean in terms of diagnosis or behavior, except that I’m a very relaxed driver, but after watching it drop yet again this afternoon, I logged it in my monitor diary and will make a point of reporting the link (again) when I see the cardiologist in 2 weeks.
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“Why would we suddenly believe that patients like these will somehow adopt emerging health technology […]”
I wouldn’t expect such patients to adopt “emerging” technology, either. But if you fast-forward a few years, I don’t think you’ll have to be an obsessive-compulsive nerd to collect data. You’ll just wear some bracelet, and your pill box will light up when it’s time for you to take your medication, for example.
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With the fistful of cardiac meds I take every day, I’m looking forward to seeing that lit-up pillbox . . .
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Interesting post! However, you are missing the main point. Unfortunately, people often wrongly associate Quantified-Self movement with gadgets and apps.
Technology is just a tool; self-quantification is about learning about yourself and improving your life, using numbers. You don’t need fancy Zeo to measure quality of your sleep, a simple question or two in the morning (“how well did I sleep? was my sleep long enough?”) can work perfectly fine.
You can discover a lot about yourself with just a notepad and a bit of dedication and consistency. Wi-Fi enabled gadgets and cool apps can certainly help, but are not required.
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Analytics just became personal! Can you express your everyday life in numbers? Can you improve your life by turning it into a series of games and experiments? Follow my personal experiment to find out: http://www.measuredme.com
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Dear Measured Me
Your site is a great illustration of a dedicated Quantified Selfer (who is using technology about as much as I expected).
In your post called “Tracking the Impact of Weather On Your Life” for example, I see that you observe: “I personally tend to experience mild depression on cloudy and rainy days, while plenty of sunshine usually affects my mood positively.”
I’d guess that this is a universally-reported experience whether or not you’re involved in the QS world. I still have trouble imagining how tracking weather patterns is going to actually “improve your life” by telling you what most of us already know to be true.
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HI Carolyn,
Do I detect some irony in your response? 🙂 Please, don’t get me wrong, I did not mean to be rude. Your post is great, I guess what I was trying to say is “let’s not focus on technology only, in QS it is the goal that matters, not the means”.
Regarding gadgets and tools: you may check out my other posts (e.g., measuring mental health or flexibility) where I don’t use any hi-tech gadgets. Regarding weather: Knowledge is power. if I know that rainy weather affects my mood (or humidity my sleep), I may change the schedule of my activities to “optimize” my day.
Other examples on how I am using self-tracking to improve my life: I am currently testing if forcefully changing my circadian rhythms (i.e., waking up early) positively or negatively affects my productivity and mental and psychological states during the day. I am also tracking my diet (by hand, by the way) to see if it affects my acid reflux and hernia. I am also trying some activities (like meditation and walking) to deal with my depression.
All the best,
Measured Me 🙂
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Hello again Measured Me. Again, you are offering several good examples of an extremely well-tracked life – as you can imagine, far more than most patients coping with serious illness could probably even contemplate, never mind actually sit down and do (whether they’re using technology or not). It’s the act of tracking in itself I’m ultimately concerned about, especially as it’s being promoted by the health apps industry at conferences like Medicine X.
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I’m guilty. I love health tech and self tracking devices. But I also see that no one is getting this right. You have intelligently called out the elephant in the room, and really, most health apps suck.
On the other hand, with the amount of investment and brainpower being applied to this area, it is only a matter of time until genuinely useful tools and technologies emerge. These companies are learning as they go, and some of them learn very quickly. As the younger, tech-savvy portion of the population ages, and the solutions for passive data gathering and meaningful feedback improve, there will be a revolution in how individuals participate in managing their own health.
Personally, I am looking forward to it!
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I hope you’re right, Jeff! Right now there seems to be little appreciation among the “younger tech-savvy” set that the rest of the world may not be exactly like them.
One intriguing thing we heard a lot at MedX was the common refrain about how these tech-savvy types can improve our health care: “If this problem came up in industry, we’d all be working on the solution by now!”
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Hi Carolyn,
You are too kind to me – thank you. One reason I was excited about sharing our latest survey data, even before we’ve fully analyzed it, was to set the day’s agenda in the context of reality. I adored our finding that half of self-trackers do so “in their heads” and had so much fun coming up with my skinny jeans example.
I thought Ernesto Ramirez, the day’s closing speaker and a moderator of a panel, did acknowledge the geeky-nerdy element of QS when he was on stage. And I’ve read enough of his work to know that he, too, is grounded in reality, as is Alex Carmichael, the other QS leader I know well. There will always be extremists — and we saw some on stage that day — but I think they represent the alpha geeks, out there ahead of us all trying everything out so that when we all catch up, we won’t have to.
Someone else whose work I follow is Buster Benson. He just posted a great essay that speaks to some of the points you make:
One quote:
“This is the pattern that I hear over and over again with people who were able to change their behaviors:
“They already believed themselves to be the person who they were changing into.”
Thanks for writing the truth about what you experienced, heard, thought — I loved sitting next to you and sensing that you were going to have a lot to say about MedX.
Keep going! Share more, please.
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Lovely to hear from you again, Susannah. Thank you for taking the time to comment here, and for your thoughts on the alpha geeks out there. Love that! – and those alpha geeks are giving self-tracking a bad name, so they should just stop it (or at least stop TELLING us all about what they’re doing!) Thanks also for the link to Buster Benson and his very interesting essay.
Again, he writes from the perspective of a “behavior change fanatic”. If I read his words aloud to some of the patients I know living with debilitating chronic illness, their response would be something like HaHaHaHaHa! For example, Buster writes: “The dissonance of having a strong belief, and living in a universe where that belief seems to be false, can create a huge burst of energy that can then be channeled into changing INTO the person that you already believe that you are.”
This makes perfect sense – until you get sick. “A huge burst of energy?!” I wish! I’m waiting for my own huge “burst of energy” to turn me back into the healthy person I used to be, so I could – oh, let’s say – drag out the vacuum cleaner or take out the recycling…
Regards,
C.
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Carolyn,
As a longtime tracker of workouts that dates back to the Neolithic period, it didn’t seem that hard to do more once this heart mess started. Boy, was I wrong!
So my tracking is like this – if I feel like it, I track. Funny how that isn’t what the health care pros want.
And yes I have an iPad, an HRM on my watch, but I don’t go to stool analysis. I can’t imagine having that kind of energy. OR INTEREST!!!
Sounds like a fun yet frustrating conference.
JG
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Thanks so much for your perspective, JetGirl. Tracking only when you “feel like it” would drive quantified selfers mad. Defeats the purpose of recording every single trackable moment of the day! Personally, I consider it a fine accomplishment when I remember to clip on my pedometer for my daily walks. The difference is: I don’t feel at all compelled to tweet my steps to my Twitter followers. Let’s face it, NOBODY is that interested! 😉
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Carolyn, I’m curious as to how many of the presenters are actually patients with chronic illness?
I had a take charge, no obstacle too big personality prior to my heart attack, and consequently Prinzmetal’s and Microvascular dysfunction diagnosis. It is all I can do on my hard days just to be awake at the right time to take my meds or check my blood pressure. I’m still trying to journal my symptoms, I’d Tweet them, but no one really wants to hear about it, lol! I did find a cheap $10 heart rate watch to use as soon as my insurance will authorize my cardiac rehab. It’s only been an 18 month and four doctor wait!
Thank you for your attendance and advocacy, there are so many of us who need a voice when we aren’t able to use our own, or our words fall on deaf MD ears.
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Hi Jana – there were a number of patient-presenters at MedX with chronic diagnoses (diabetes, arthritis, etc)
But as you know, there’s heart disease and then there’s heart disease. Not all patients share the same quality of life outcomes even with a broadly shared diagnosis. Like you (also have microvascular disease) my “hard days” are almost impossible to describe to healthy people. Thanks so much for sharing your take on this.
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@JetGirl: “Funny how that isn’t what the health care pros want”. I think you need to think about it from the perspective of what you want. If collecting data doesn’t help you manage your condition, then you will likely be unmotivated to do it. Those who monitor get something from it.
I don’t mean to sound mean, but all of this comes across as complaining.
People are out there making apps using the best knowledge and skills they have. Those who find that useful will use them – those who don’t like yourself won’t. Others will build on what these early products have achieved. I would rather hear alternative solutions from the naysayers…rather than complaints about why others don’t understand your situation. What are the problems you need solved? What solutions can you think of to help solve those problems. They are the people that are interesting to hear from – not those who whinge about what others are doing.
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