Nice to meet you. We have the same disease ...…

A Rhetorical Study of Online Peer-To-Peer Patient Communication

A research project on the interactions between virtual and physical spaces (and the people in the spaces), co-directed by Lynn Koller, Assistant Professor at the Embry-Riddle Aeronautical University (Daytona Beach, FL, US), and by Matthieu Guitton, Assistant Professor at the Faculty of Medicine of Laval University (Quebec City, QC, Canada).

US adults who are Internet users 74

%Of those:

• 80% have looked online for health/medical information

• 24% have consulted online reviews of particular drugs or medical treatments

• 27% have tracked their weight, diet, exercise routine or some other health indicators or symptoms online

Pew Research 2010

US adults who are Internet users 74

%Of those:

• 80% have looked online for health/medical information

• 24% have consulted online reviews of particular drugs or medical treatments

• 27% have tracked their weight, diet, exercise routine or some other health indicators or symptoms online

• 34% have read someone else’s commentary about a health issue on a news group or blog

• 18% have gone online to find others who might have health concerns similar to theirs

Pew Research 2010

US adults who use social network sites46

%Of those:

• 23% have followed their friends’ personal health experiences or updates on the site

• 17% remember or memorialize other people who suffered from a certain health condition

• 15% have gotten any health information on the sites

“The social life of health information is robust. The online conversation about health is being driven forward by two forces:  1) the availability of social tools and 2) the motivation, especially among people living with chronic conditions, to connect with each other.”

Susannah FoxPew Research 2011

Ravi showed Tam a link to a page on a health forum where, three years earlier, Keybowvio had asked why his asthma symptoms had suddenly worsened, noting that he had prescriptions for Advair and Singulair. Nobody had replied. There was just Keybowvio’s follow-up: “Anyone?” (“What a pussy,” Tam wrote.)

From The New Yorker, February 6, 2012

Tyler Clementi committed suicide on September 22, 2010

Narcissism and Pathos

“group narcissism”

“suffer with me”, “suffer together"

“Sym-pathy”

The modern avatar of sympathy, or the new way to fight social potential decline

Digital sympathy

Peer-to-Peer Patient Support

Our research direction

by: deciphering and predicting the impact of web-based technologies on our health and wellness

about: rhetorical strategies for communication

2 areas of interest: health forumspatient blogs

today: preliminary datafeasibility (“proof of concept”)

health

forums

itchy feet insomnia

The thread covers a four year span (May 28, 2005 – July 20, 2009). Comes up first in Google search for “itchy feet insomnia”

Random Numbers?84 posts85 exclamation marks44 question marks9,232 words39,231 characters without spaces48,514 characters with spaces

Posted by JasonM on 5/28/05

I am a 25yr old healthy male and for the last 3 months have been suffering from a very very itchy left heel. It is only on my left heel and it tingles and feels like it is coming from inside my heel, it occurs in one spot and goes then can come back in another spot. I also get it when i am sleeping at night and it wakes me up.

I thought it migt be athletes foot symptoms as i am prone to it, but i have got every athletes foot cream, spray powder(scholl,Mysil,Daktarin,lamisil) but none of them seem to be working. I don't know what else to try and i am getting annoyed as i am constantly itching my heel and getting woken up by it, please help.

initial post

Re: itchy left HeelCameron D. 11/02/07Hi, I don't have any answers but I'd just like to add my story. I'm 15 and the itching started a couple weeks ago …

Wendy 7/20/09Amy,I'd love to know if your therapy is working or anything else!!I have the exact problem as eveyone else, and here I am at 4-5 am searching to find out why my itchy heels are keeping me awake!!!It is disturbing to see that no one has found a diagnosis or any relief.

Phillip 11/10/07I've had this for years (at least 15) and it comes and goes, although on average it has got slightly worse. […] Apparently lots of people are troubled by this problem Intuitively. I feel that this is a nervous disorder (maybe anxiety linked) rather than a skin disorder, but I'm not a doctor. The doctors don't really seem interested so I guess that you just have to live with it, maddening as it is at times.

Gina 6/17/09I feel like I found gold, seeing all these posts. My story sounds just like everyone else's; itchy left heel, sometime both, wakes me up in the middle of the nigh, products don't help.

Metatag generator created this list of 100 words <meta name="keywords" content="itchy, left, heel, problem, itch, just, night, know, foot, feet, right, started, get, help, back, feel, itching, try, really, skin, relief, thing, wakes, time, months, inside, heels, tried, day, years, works, crazy, bad, complex, take, vitamin, find, may, ago, think, cream, nerve, work, love, sleep, need, internet, away, scratching, ill, going, feeling, couple, thought, old, spot, vitamins, people, helps, nuts, 09i, hope, feels, gone, plantar, bed, answer, cure, bottom, come, getting, dead, creams, looking, 08i, diagnosis, worse, problems, looked, itches, sounds, searching, therapy, minutes, babys, luck, male, scratch, deep, doctor, 09wow, ped, 09hello, keeps, said, fasciitis, reflexology, pain, sciatic, coming" />

The thread covers a four year span (May 28, 2005 – July 20, 2009). Comes up first in Google search for “itchy feet insomnia”

Random Numbers?84 posts85 exclamation marks44 question marks9,232 words39,231 characters without spaces48,514 characters with spaces

Color code for highlightsUser recommends treatment to alleviate symptoms.User expresses satisfaction/surprise at finding others suffering with similar symptoms.User refers to specific time of posting in the middle of the night.

Re: itchy left HeelCameron D. 11/02/07Hi, I don't have any answers but I'd just like to add my story. I'm 15 and the itching started a couple weeks ago …

Wendy 7/20/09Amy,I'd love to know if your therapy is working or anything else!!I have the exact problem as eveyone else, and here I am at 4-5 am searching to find out why my itchy heels are keeping me awake!!!It is disturbing to see that no one has found a diagnosis or any relief.

Phillip 11/10/07I've had this for years (at least 15) and it comes and goes, although on average it has got slightly worse. […] Apparently lots of people are troubled by this problem. Intuitively I feel that this is a nervous disorder (maybe anxiety linked) rather than a skin disorder, but I'm not a doctor. The doctors don't really seem interested so I guess that you just have to live with it, maddening as it is at times.

Gina 6/17/09I feel like I found gold, seeing all these posts. My story sounds just like everyone else's; itchy left heel, sometime both, wakes me up in the middle of the nigh, products don't help.

Severely tensing the muscles of one foot and maintaining the tension (although the problem effects both feet and may effect both feet at the time I only need to tense one foot - very peculiar) helps a lot.

patient blogs

Blogs give patients the ability to find and communicate with each other in a way that may (or may not) be empowering and is relatively unexplored in terms of rhetorical strategies for communication.

MENTAL HEALTH CONDITIONS

Disease Number of blog Posts per blog Total number of post       Abuse and trauma 23 214.78 + 49.76 4940Anorexia 19 562 + 100.545 10678ADHD 1 613 613Anxiety 1 587 587Autism 1 1123 1123Bipolar disorder 11 497.18 + 214.58 5469Borderline personality disorder

1 323 323

Crohn’s disease 1 187 187Depressive disorder 25 146.52 + 39.14 3663Dissociative identity disorder

6 514.83 + 393.08 3089

Personality disorder 3 612 + 198.1 1836Schizophrenia 3 229.67 + 109.18 689

PHYSICAL HEALTH CONDITIONS

Disease Number of blog Posts per blog Total number of post       Handicap 2 1119.5 + 433.5 2239Heart disease 16 266.94 + 53.5 4271

Can we identify a large enough corpus?

Yes it is the number of blog we found after a quick survey using disease as keyword. We then classified the blogs according to the pathology. And then, for each blog we counted the number of post. Then, for each category, we made the average number of post per blog (expressed in mean +/- SEM). Then, we just for each category counted the total number of posts, to get an idea of the size of the corpus we could investigate. How I would present it ... I would first make a slide focusing on the feasibility of doing blog research, with the example of mental health disorders, and give the first table. I would emphasis 2 points: 1) people who write such blog actually post A LOT of post, and 2) with an animation for the "grand total" of the last column, I would say: Look, we have a huge corpus on which we can do both quantitative and qualitative analysis, so this research direction is valid.

healing through digitization

immortality through digitization

from dust to life to binary code

(my daughter’s chest)