Susannah Fox, Project HealthDesign National Advisory Committee, Pew Research Center's Internet and American Life Project
Regina Holliday, Patient Advocate, Regina Holliday's Medical Advocacy Blog
Editor's note: This post is second in a series about patient engagement, and is adapted from a post on e-patients.net.
From Susannah Fox:
Project HealthDesign is all about engaging in an ongoing conversation about health and health care, so it didn’t surprise me at all when I saw this tweet:
What if patients' observations of daily living helped inform clinical decision-making processes? #whatifhc— Project HealthDesign (@PrjHealthDesign) February 6, 2012
It was a fitting contribution to the “What if health care … ?” dance on Twitter. Contributions poured in from patients, clinicians, organizations, and policy-makers, creating a wonderful jumble of inspiration. Hopefully connections can be made and projects launched, but in the meantime, we all had a marvelous time imagining possible futures, including one which acknowledges the role of patient-generated data.
What’s your health care dream?
For me, Twitter is a free-wheeling space where people dance with ideas. Anyone is welcome to jump into the spotlight and take a twirl. That's how I see hashtags — spotlights on circles of people, talking about certain ideas. Create a hashtag and you call the tune. Add a hashtag to your tweet and you join the circle.
Over the last few weeks #whatifhc (which stands for “What if health care…?”) became a flashmob of dream-sharing, a pop-up forum for health care ideas, no matter how idealistic, grand, or granular.
It started when I tweeted a quote from Peter Margolis of the C3N Project:
“What if it was as easy to find out how to ... find a medicine that’s right for you as it is to order exactly the book you want?” #c3n
His colleague Michael Seid tweeted back:
“new hashtag? #whatifhc what if everyone had the means & motivation to be part of the solution?”
I tweeted a few examples and the dancers began to whirl:
@produceconsume: #Whatifhc was focused on health, not just on care?
@cloudspark: what if we rewarded docs for choosing primary/family/internal medicine instead of specialties? #whatifhc
@klimaz: #whatifhc people actually took the advice of public health: stop smoking, get outside, eat fresh food, reconnect with friends...
@swertheimer: What if hospital bills showed actual costs? #whatifhc
@meganhatch: What if looking at my medical information and records were as easy as checking my email? #whatifhc
But a couple of people looked at #whatifhc and saw #wtfhc (“What the f… health care?”) in the jumble of letters. They heard a darker drumbeat, from a nightmare, not a dream.
@ReginaHolliday: What if your husband was dying and they would not let you see a medical record w/out paying 73 cents per page? #wtfhc
And the dance continued, spinning out in two directions now.
From Regina Holliday:
Susannah is right. Twitter is a dance. We often remain wallflowers until a new song is played. A hashtag catches our eye allowing us the chance to meet new partners or reunite with old ones. When I saw #whatifhc, my dyslexic mind and injured soul saw #wtfhc. I blushed to use this hashtag, as I am not one to curse. It made me uncomfortable. What would people think?
I suppose a lot of things in health care are uncomfortable.
It is uncomfortable to lie on bedsores while in constant pain. It is uncomfortable to have a catheter placed. It is uncomfortable to be woken in the middle of the night because staff members think that is the best time to check your vitals.
It is uncomfortable to gasp for breath while fluid to fills your lungs as you lay dying.
I might have lost a few followers when I tweeted with this tag. I seemed the angry patient. I made them uncomfortable.
I paint about this discomfort frequently. When you look upon The Walking Gallery you will see a great deal of #whatifhc jackets. Susannah’s jacket is mostly a #whatifhc interpretation. They are beautiful and hopeful, but you will see #wtfhc jackets too.
What if a day came when I only had to use just one tag: #whatifhc?
What's your health care dream? What's your nightmare? Add it in the comments below or join the dance on Twitter.