Nothing about me without me
By · CommentsThe last few weeks have been a cluster-dance of activity in the e-patient community. Actually, pretty much any week is a fast dance in the participatory medicine world, given the drive toward healthcare reform in the US.
The loudest dance orchestra has tuned up around the controversy created when the American Hospital
Association (AHA) posted its comments on the Phase 2 Meaningful Use (MU2) rules, which are part of the Patient Protection and Affordable Care Act (PPACA), a/k/a healthcare reform or Obamacare, depending on what your preferred nomenclature is.
The bottom line: even though the Centers for Medicare and Medicaid Services (CMS) has made re-admissions to the hospital within 30 days after discharge a giant “we won’t pay you for that” red flag, the AHA stood up on its hind legs and said, regarding MU2, that they did not want to make records available to patients for 30 days post-discharge.
Which seems to mean that the AHA is either totally OK with not getting paid for a re-admission within those 30 days, or they’re trying to use a giant hammer to kill the adoption of electronic medical records technology.
A third explanation – and one that I think is actually what’s happening here – is that the last couple of years of massive IT deployment in healthcare has been really hard. And the policy wonks who wrote the comment for the AHA have little or no dealings with actual patients. Because anyone with a brain who works in healthcare knows that not empowering patients to manage their care is the best path to both bad outcomes and bankruptcy.
If you’d like to read all about the issue, you should start with
David Harlow’s Healthblawg
e-Patient Dave
Healthcare activist artist Regina Holliday (the Rosa Parks of patients’ rights)
Do not fear dragons
By · CommentsI was born in one of the Chinese zodiac’s Years of the Dragon. I am a fire sign – Leo – in western astrology. I’m fierce, and I roar frequently. I have often been accused of being a fire-breathing dragon.
Those who said that aimed at criticism. I took it as praise.
#HAWMC Day 24 – today – I am asked to create a mascot for myself and my health activism.
I’m a dragon. Of course I’m a dragon. I embrace my dragon, and my ferocity.
Madlibs poems: way cool
By · CommentsI have taken both of my #post #fail days for #HAWMC, so I gotta really slave to the grind thru the next 10 days.
That said, today’s prompt involved going to Madlibs Poem generator, filling in the blanks (be prepared, there are many!), and hitting “go!”.
I went. This was the result. I surrender I spread you up inside my party.
funny cancer’s funny cancer
I swim my wings and all the walls prays books;
I shake my gardens and all is fight again.
(I surrender I spread you up inside my party.)
The wines go releasing out in crazy and fierce,
And foggy beer opens in:
I jump my fear and all the humor flys tree.
I runed that you leaned me into flower
And bend me scary, walked me quite free.
(I surrender I spread you up inside my party.)
sun leaps from the moon, surfboard’s mountains soar:
dive ocean and sailboat’s train:
I jump my fear and all the humor flys tree.
I surfed you’d bounce the way you look,
But I see beautiful and I hear your jet.
(I surrender I spread you up inside my party.)
I should have speaked a submarine instead;
At least when parachute roars they scream back again.
I jump my fear and all the humor flys tree.
(I surrender I spread you up inside my party.)
- Mighty Casey & Sylvia Plath
5 Dream Team dinner guests
By · CommentsThere are five people for whom I would walk over broken glass, if on the other side of said glass was a dinner table set for six, with them waiting for me. Here they are, in no particular order:
Marie Curie
My mother was a stone-cold science geek. One of her inspirations was Madame Curie, who literally gave her life to her scientific research. I’d love to ask Mme. Curie what it was like to be a brilliant scientist and a woman at a time when women were supposed to be mere decorative objects or domestic drudges. I’m sure her self-told story would be incredible to hear.
Oscar Wilde
What can I say? I’m just Wilde about Oscar, always have been. His sharp wit, his inability to truck with idiots, his life-long search for beauty and intellectual stimulation, along with a good laugh, tell me that he and I would be instant BFFs. I would love to hear his take on social media. And the Kardashians.
Tenzin Gyatzo
Who’s that, you say? The Dalai Lama, kids. Actually, I kinda did have dinner with him once, in a sushi bar on Rt. 7 in Arlington, VA. I was in there on a busy Saturday night with my sister, and we were negotiating seats at the sushi bar – the place was packed – when suddenly there was a noticeable shift of all eyes to the big group waiting in line behind us. In the middle of that group was a bright-eyed guy in saffron robes. Yep, the Dalai Lama. We got our seats at the sushi bar, and he was seated immediately at the owner’s table.
Boudica
You don’t know who she is? She faced down the Roman Empire in what is now Wales back in AD 60 or so, and even though she was eventually defeated and killed herself to prevent capture, she’s my kind of woman: fierce, a leader, and not afraid to go up against a massively larger force in defense of her home and her people. Her rebellion made the Romans question their occupation of Britain. Yep, my kind of gal.
George Clooney
If you need to ask why … well, don’t. I’ve never liked pretty boys, but handsome men with brains? OMG, bring ‘em on! There are not a lot of Hollywood peeps who walk their talk the way George does. I’d consider it a privilege to break bread with him – and I bet he’d be thrilled to meet the other four guests on this list!
I learned about patient advocacy the hard way
By · CommentsWell, maybe it wasn’t the hard way for *me*, but it was a hard lesson nonetheless.
When I was in my early 20s, my maternal grandmother (the Admiral’s wife) had a serious health event that involved hospitalization, and fear that she was at death’s door. The cause turned out to be not heart failure, not a stroke, not peripheral artery disease, not “old age”, but … pharmaceutical assault.
This assault was perpetrated by her trusted family doctor, one she’d been seeing for over a decade. When we pulled open the drawer where she kept her medications and found more than 40 bottles of pills – all current scripts – we figured out pretty quickly what the disease was that we were dealing with. Stupidity.
She recovered, and lived another nine years – until the last minute, she was entertaining, cooking, enjoying life, and taking only a few meds.
Lesson learned: drugs interact with each other, and in an even more scary way than the recreational drugs I was familiar with had interacted on many of my friends …
Fast forward 25 years, and my parents – the Admiral’s daughter and the dashing fighter jock – were battling a couple of health issues. Daddy had Parkinson’s disease, Mom had had a pituitary tumor that had been removed, but that missing pituitary gland had put her on a cocktail of endocrine management meds that had to be delicately balanced to ensure that she didn’t wind up in a permanent sinking spell.
I found myself advocating for both of them at various times for equally various reasons, but my hard lesson there was this: unless someone is advocating for you, you could easily wind up dead, or crippled.
I discovered that all the years I’d been researching news topics were right handy when it came to knowing how to find out – fast – what a diagnosis or prognosis meant, and to be able to pick up terminology and jargon after hearing it only once.
All nurses thought I was a doctor. Most doctors thought I was a doctor. I started getting much more information once that was in play.
And that’s a really crummy lesson – unless healthcare thinks you’re an insider, you’re treated like a meat puppet.
That attitude is starting to shift, but the pace of that shift still feels pretty glacial. Until all doctors treat all patients in a way that recognized their humanity, and their right to know what’s happening to their bodies during all treatment options, there are still millions of hard lessons to be learned.











