by Carolyn Thomas ♥ @HeartSisters
Before surviving a heart attack in 2008, I never gave my heart more than a passing thought (except maybe when slogging up that brutal Quadra Street hill with my running group on our way back to the Y). But after my heart attack and accompanying shock, disbelief, grief and anger, I became just a wee bit obsessed. I threw myself into boning up on women’s symptoms, risk factors, diagnostics, treatments and emerging cardiac research as if I were cramming for some kind of imminent cardiology midterm.
I applied to attend the annual WomenHeart Science & Leadership Symposium for Women With Heart Disease at Mayo Clinic – and then became the first Canadian ever accepted for this patient advocacy training. I subscribed to daily cardiology bulletins and heart institutes’ news feeds. I launched this blog, Heart Sisters, and have written 500+ articles here so far. I’ve given presentations about women’s heart health to thousands of people. And I applied for media accreditation so I could interview cardiac researchers attending the 64th annual Canadian Cardiovascular Congress (the first of many I would attend over the years) – where I was shocked to find that only four of the 700 scientific papers presented at this conference were even remotely focused on women’s heart disease. I find this subject both astonishing and compelling, and am almost insufferably preoccupied with All Things Cardiac.
Just recently, I came across a term that seems to capture the kind of person I’ve become, post-heart attack: an “information flâneur”. Or, more appropriately, a flâneuse, the female version of this affliction.
These words come from the French verb flâner, which means “to stroll”. The term originally referred to “a person who walks the city in order to experience it” – affectionately associated with the city of Paris.
But Philadelphia physician Dr. Kent Bottles tells us that this meaning has now expanded to include much more than just exploring a city, as he explains:
“This has validated my approach to information gathering – wandering around and finding things I did not know I was looking for.”
This kind of information gathering – “wandering around and finding things I didn’t even know I was looking for” – has led me down some interesting paths, too.
For example, becoming an information flâneuse is how I happened to stumble upon Canadian researcher Dr. Graeme Smith’s important studies on pregnancy complications (particularly preeclampsia, which I had during my first pregnancy) and the corresponding link to a 3-4 fold increased risk of subsequent heart disease. Dr. Smith’s groundbreaking work at Queen’s University in Kingston, Ontario was my first introduction to this link – and that was a full year before the U.S. government decided to officially include pregnancy complications like preeclampsia in its most up-to-date list of known heart disease risk factors in women.
Learning as much as we can about our bodies and our health is also illustrated in the concept known as “the Quantified Self“, in which we become involved in self-tracking. We do this every time we clip on a pedometer before heading out on a walk, or step on the bathroom scales, or record our blood pressure readings, or track other important health information about ourselves.
There’s even a website for those interested in – I’d say obsessed with – the Quantified Self. Committed Quantified Selfers use computers, smartphones, electronic gadgets, or pen and paper (remember those?) to record work, sleep, exercise, diet, mood, your sex life and pretty well anything else that’s trackable in life. These self-trackers even have conferences, meet-ups and online discussion forums where they can compare notes on all kinds of things you probably never even thought about keeping track of.
I’m guessing that most of these Quantified Selfers are male, based on what I read in the literature, including Matthew Cornell’s recent post about this gender divide on the Quantified Self website. His rough analysis of QS comments, videos, and in-person meet-ups found a clear difference in participation: about 80% men, 20% women. And Susannah Fox wrote this month about Stephen Wolfram’s recent eye-popping data collection analysis of, among other things, how many individual keystrokes he’s chalked up on his computer over the past 20 years.
In her e-patients.net column called “What’s The Future For Self-Tracking?”, Susannah wrote:
“You get a sense of a Mars/Venus divide – men are out on the patio enjoying a cigar and contemplating their personal time-use philosophy, while women clear the table, sweep the floor, get the kids to bed, and frantically send emails about the next day’s meetings.“
As Massachusetts physician Dr. Marya Zilberberg responded to Susannah’s column:
“This is a case of ‘not everything that can be counted counts, and not everything that counts can be counted.
“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.”
I agree with Dr. Z. But even though my new life as an information flâneuse doesn’t go as far – and never will, I’m guessing! – as being a committed Quantified Selfer, I am concerned about those at the other end of that spectrum: those people (many of them, sadly, patients living with chronic diagnoses like heart disease) who don’t seem remotely curious about learning, tracking or improving anything about their own health, despite a life-altering serious diagnosis.
Dr. Joseph Kvedar of the Center for Connected Health is also concerned. He wrote an essay last summer called From Couch Potato to Quantified Self about inherent challenges for the health care professionals who treat this type of patient. He starts by blaming health care providers for failing to create an expectation that patients should take charge of their own health:
“Health care providers have, consciously or unconsciously, given patients the message that once you have a diagnosis, it’s too complex to self-manage.
“Our insurance plans and politicians have a hand in this too by sending out the message that sick people are victims, and health care is an entitlement.”
Dr. Kvedar also cites the distressing example of his own organization’s Diabetes Connect program. Until recently, this promising program involved a device that measured a diabetic patient’s glucometer readings and moved them over a phone line to the program’s central database.
“But for a disappointingly high fraction of our patients, the step of plugging in a device to the glucometer, then to the phone line, and then pushing a single button to upload glucose readings was more work than they were willing to do.
“Even the opportunity to see their glucose readings quantified and shared with their health care provider was not enough motivation for some individuals.
“This experience calls into mind several interesting hypotheses about the gulf between the Quantified Selfers and our ‘average Joe’ patients.
“One explanation could be that managing chronic disease can be too complex and too overwhelming for some patients to take on anything more.”
Researcher Marian Dörk of the University of Calgary adds that information-seeking involves a wide range of emotional experiences and personal motivations. In a scientific paper* called The Information Flaneur: A Fresh Look at Information Seeking, Dörk and his colleagues describe a shift in perspectives on information-seeking towards a more optimistic outlook:
“The information flâneur represents curious, creative, and critical information-seeking. The resulting information-seeking model conceptualizes the relationship between information activities and experiences as a continuum.“
Their study also reviews the history of information-seeking, citing research, for example, on sense-making information gathering, or how we seek information as a way to make sense of our situations in life – information that we hope will help fill in the gaps in our knowledge.
- They also remind us of the important premise that “reality is neither complete nor constant”. Some describe our information-seeking interactions with so many online systems as berry-picking, defined as an evolving search using a wide variety of sources and searching techniques. Dörk adds:
“The challenge is to help information seekers turn information gaps into sense-making opportunities.”
* Marian Dörk, Sheelagh Carpendale, and Carey Williamson. The Information Flaneur: A Fresh Look at Information Seeking. CHI 2011: Proceedings of the SIGCHI Conference on Human Factors in Computing Systems, ACM, pages 1215-1224, May 2011.
NOTE FROM CAROLYN: I wrote more about this topic in my book “A Woman’s Guide to Living with Heart Disease“. You can ask for it at bookstores (please support your local independent bookseller!) or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from my publisher Johns Hopkins University Press (use their code HTWN to save 30% off the list price).
Living with the burden of treatment (about Dr. Victor Montori’s Mayo Clinic-based team working on the innovative concept of Minimally Disruptive Medicine)
Self-tracking tech revolution? Not so fast. . .
Why the Harvard Business Review Was Wrong About Patients
When the Elephant in the Room Has No Smartphone
What Doctors Really Think of Women Who Are Medical Googlers
“Seeking Social Solace”: Why Aren’t Heart Patients Online?
Your Health Care Decisions: Don’t Worry Your Pretty Little Head Over Them
The Quantified Self Meets the Urban Datasexual
Dr. Sherry Turkle: “I Share, Therefore I Am”
“Distracted Doctoring” – updating your Facebook status in the O.R.
News flash: Smartphone Users Obsessively Check Their Devices
Why You Should Put the Damned Phone Away
Q: Are you an information flâneuse/flâneur, too?
9 thoughts on “How a heart attack turned me into an “information flâneuse””
Je suis aussi une information flâneuse. I am wondering how much work you are doing with gathering all the information. I do not know any similar blogs in Germany or in my home country. All the blogs I have found are commercial and I do not like to read them or write in them.
Spring greetings. I hope you are well.
Bon jour, Mirjami. I’m a very early riser (crazy-early… 4:30 a.m. most days) which is when my brain actually functions, and that’s when I can spend 2-3 hours each morning noodling around here, writing, responding to comments, researching. Best time of the day for us flâneuses – watching the sunrise while at work! (I call this “cardiac rehab for my brain!”)
I too ignore commercial blogs, or any site selling anything (especially when run by those with the letters M.D. after their names). What I do look for in other sites is Health On The Net Code certification – a sign of “trustworthy health information”.
Happy springtime to you, too. I love this time of year!
I was on your site today because I am another information flâneuse. Yes, every day, there are heart sites I visit.
Welcome, fellow flâneuse . . . 🙂
I was wondering how to describe my quest for heart-related information. Now I know…and can add another title to my business card: Cardiac Flâneuse-In-Training.
That sounds pretty impressive, doesn’t it, Campy?
Carolyn — I am so glad you wrote this! I seek out every bit of knowledge I can on heart disease. I had no idea that had a fancy name! Sadly, none of it was passed on to me from the medical community. The medical treatment for my symptoms I received was stellar and absolutely saved my life. After that, everything I know I have learned myself.
Hi Jodi, and welcome to another information flâneuse!
I was just reading an interesting article this morning on what medicine could learn from car dealerships. Car dealers give you a business card as you’re driving your new car off the lot and say: “Any questions? Call me!” Hospitals, on the other hand, hand you a giant whack of paperwork as they boot you out the door while telling you: “Any questions? Call your doctor – not us!”