Note: This is two posts in one — scroll down to read Regina Holliday’s point of view.
From Susannah Fox:
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 days #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?
@GoalsGamified: What if more Americans accepted that shopping at farmers market costs less than food courts in the long term. #preventionisthrift #whatifhc
@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:
Looking back on the memory of
The dance we shared beneath the stars above
For a moment all the world was right
How could I have known you’d ever say goodbye
And now I’m glad I didn’t know
The way it all would end the way it all would go
Our lives are better left to chance I could have missed the pain
But I’d of had to miss the dance.
-Garth Brooks, The Dance
Susannah is right. Twitter is a dance. We often stay wallflowers surrounding the space 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 tag, 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, whist 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.
Perhaps when I post a jacket, I shall use these tags. Labeling each jacket with darkness and light.
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? Please add it in the comments below or join the dance on Twitter.
What if we paid primary care doctors out of pocket. Car insurance doesn’t pay for oil changes or regular maintenance. #whatifhc
Thanks, Ileana! That’s a great one. I saw some others popping up on Twitter overnight:
Sherry Reynolds (@Cascadia): what if we realized that health happens in community?
@MeredithGould: #whatifhc Used a common clear language that would help patients & providers communicate challenges, problems & solutions
Andreas Lundquist (@In_My_Orbit): #whatifhc tried to work more proactive instead of reactive.
Frank Moss (@frank_moss): #whatifhc were a true COLLABORATION between doctors and patients? Its in the works @mit @newmediamed bit.ly/mfbEiP
@FarhaMarfani: #whatifhc embraced cultural competency and recognized its importance in providing effective care to minorities.
I’m invited to listen, learn and participate with some of the very best and brightest minds all over the world.
It’s so easy to “hear” tone of voice, intention and be misunderstood with only 140 characters to give us direction.
What if when in doubt we gave benefit of doubt?
For those we consider part of our #HCSM Community:
Twitter is a dream when we listen, learn and ask for clarification by using a more private mode of communication when we don’t understand and the topic is important.
Twitter is a nightmare when misunderstandings occur and people are not willing or able to find a way to write an email, phone call or Skype session.
Regina’s example of being misunderstood has also happened to me. The dream of twitter of is real enough for me to continue even when if I’m misunderstood.
@SavingCase: Large touch screens on the walls in dr rooms with health care records easily accessible, editable, & understandable #whatifhc
@ChristopheGC: #whatihc realized that all of us are not only consumers but also producers of health info?
Basic: To become healthy.
#whatihc patient safety was enforced all the way from the entrance door of a healthcare unit to exit door
#whatifhc Health care is a first priority for a society that includes all members, with equality, dignity and respect for all individuals and families as its focus.
♦ My dream for health care is that there be, within every component of the system, an overarching, universally accepted and enforced sincere application and dedication to the vow, “First Do No Harm!”
♦ My dream for health care is that the many system-wide conditions, which often result in Md’s protective and defensive attitudes, be remedied. An “us against them” climate results from the current system. In order to protect their own self-interests, the system, often forces Md’s to compromise the best care they can give to patients.
♦ My dream for health care is that medical liaisons exist. These professionals would be well versed in the culture of medicine practices, be excellent communicators, and serve to resolve situations where patients feel confused or misunderstood by their providers. Hospitals sometimes have such advocates on staff, but my dream is that medical practices also have similar mediators available.
♦ My dream for health care is to have an accessible list of physicians who welcome open records and dialog so that patients can use this criteria when choosing a physician.
♦ My dream is that there be more data available about personalities of individual physicians so that patients can choose a “good fit.” ( I know more about choosing a new cell phone than a new doctor and it takes a very long time to discover that a doctor is not the right one for me.)
♦ My dream for health care is that Md students are screened for character traits and emotional intelligence as well as academic intelligence. It appears to me that some serious personality disorders do make it into the profession.
♦ My dream for health care is that patient’s medical histories also include some personality self-reporting. For example, some patients prefer not knowing the “gory details” about a needed procedure, others want to know it all. Some are basically pessimists and may have a tendency to excessive worry, while others may be optimistic to the point of dismissing the seriousness of a diagnosis. Understanding a variety of personal differences, could benefit communication between Md and patient and improve outcomes.
Peg, thank you! It’s an honor to host your dreams — and hopefully spark a discussion about some of the issues you raise.
I wonder — how do clinicians decide what to share or not share with a particular patient? Do they have internal gauges to help them figure out who might want the gory details? I’d love to hear from clinicians or from patients who have experiences to share with this type of information-exchange relationship-building.
My dream for healthcare is that it helps people find healing and wellness instead of masking symptoms until our bodies have no choice but to do something catastrophic to get attention.
A headache is only a message from your body – not something to be stamped out with the nearest bottle of pills. Feeling sad or blue? Maybe you’re not living into your dreams. Tired and lethargic? Maybe your body forgot how good it feels to move. Bloated and inflamed? Maybe those highly processed foods from a box are really poison in disguise.
My dream for healthcare is that it still exists to take care of us for life’s little “uh-ohs.” That we don’t bankrupt it paying for more drugs, surgeries and tests. My dream for healthcare is that it starts with earthcare, then selfcare, then familycare, then neighborcare, then worldcare.
My dream for healthcare is that we harness these technological advances to enable true inclusion and reduce health inequalities for people with learning/intellectual disabilities, ensuring that healthcare is person centred and issues such as those outlined in Mencap’s Death by Indifference http://www.mencap.org.uk/node/5863 can be avoided.
#whatifhc doesn’t collect deductibles and co-pays so policy holders don’t have to get out money from their pockets in paying medical bills. Seriously, even with a lot of articles explaining what it is for. (Like this one, http://reallycheaphealthinsurance.com/health-insurance-deductibles-explained/). Because I still don’t quite get it. Why don’t they just charge it all in the premiums? The only thing I learned is that it helps lower your overall premium. But that doesn’t make you “insured” enough.
#whatifhc we made universal core values the foundation of all healthcare. Values are essential to the practice of compassionate and ethical care.
Several years ago, we established an international collaborative effort to identify and promote the human dimensions of care. This effort has resulted in the International Charter for Human Values in Healthcare.
The mission of the International Charter for Human Values in Healthcare is to restore the human dimensions of care – the universal core values that should be present in every healthcare interaction – to healthcare around the world. We invite you to join us in our work! charterforhealthcarevalues.org