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participatory medicine

Apr 11 2013

Firehose of healthcare cost resources for #billesq

By e-patients, healthcare industry, healthcare price transparency, participatory medicine

I attended the 2nd edition of the bill conference in Richmond VA today (for the record, that’s Saturday, April 6, 2013), and wound up kicking off the talks with what’s become my core topic: #howmuchisthat, healthcare edition. That link goes to the hashtag’s home on Symplur, the healthcare hashtag registry that’s also a veritable time-sink of terrific healthcare thought leadership. Including healthcare data visualization. You’re welcome. Why is this a topic I care so much, and know so much, about? I believe that in all the hot air that’s been expended in the discussion about healthcare and healthcare reform in the US – and boy, howdy, is that some hot air! – very little shrift is given to how consumers (commonly called “patients”) can effect grassroots change themselves. The firehose below takes a wander through the history of US healthcare, particularly from the cost angle, and resources that the average human can use to start figuring out, ahead of time, how to assess the value (medical and fiscal) of their healthcare options. Here’s the firehose. Steve Brill’s epic TIME piece, Bitter Pill  pack a lunch, it’s the longest article TIME has ever published My take on where Brill missed the mark on his “fix this mess” recommendations A Feb. 12 post that raises Brill’s issue in what I think of as a great-minds-thinking-alike synergy My health econ guru Uwe Reinhardt’s Chaos Behind a Veil of Secrecy article in January 2006 edition of Health Affairs A post that includes intel on the RUC and the LA Times piece – both of which I mentioned in my verbal firehose A NY Times story on the unintentionally hilarious 2013 report in JAMA (Journal of the American Medical Assn.) on the wide disparity in pricing for hip replacements in the US – the RUC is an AMA committee! Society…

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Mar 23 2013

HOW MUCH DOES IT COST TO GET IRRETRIEVABLY PISSED OFF?

By healthcare industry, healthcare price transparency, participatory medicine

Nothing. It’s free. Just costs a little of your time. First, a piece from the New York Times magazine on the science of making addictive foods.           Second, a post on the TIME Healthland blog about the insanity that is medical billing.                   Go ahead. Read, get angry, get engaged, DO SOMETHING. Lather, rinse, repeat.

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Jan 01 2013

2013: The Year of Healthcare Emancipation?

By e-patients, healthcare industry, healthcare price transparency, participatory medicine

Hang on to your hats – this one might wade into controversy. As I write this (3:30pm EST on January 1, 2013), I’m listening to a conversation on NPR about the Emancipation Proclamation, which was signed into law by Abraham Lincoln 150 years ago today. I’m also reflecting on a couple of movies I’ve seen in the last 45 days: Lincoln (over Thanksgiving weekend) and Django Unchained (on Christmas Day). Is it time for an emancipation proclamation for patients? Or should we just saddle up and have a shootout at the plantation … um, hospital instead? Too many healthcare transactions are still conducted over the patient’s supine form. Doctors, hospitals, and other entities in the “provider” column horse-trade with health insurers, including Medicare, in the “payer” column. That means that the patient winds up shackled. No say in how much something costs, no real voice (yet) in what happens next, little interest on the part of the two trading entities in clueing us in to what’s happening. Some of my connections in the participatory medicine/e-patients movement use a driver-rider metaphor for transforming healthcare, with the patient moving from passenger to driver in healthcare. It’s a less controversial/confrontational metaphor than referring to patients as chattel on the medical plantation. However, I’m sticking with that plantation metaphor for the moment, because too many in the provider and payer camps are still viewing patients as meat puppets, not as full participants. Does healthcare need an emancipation proclamation? Yes. Here’s where the metaphor shifts: let’s not wait for someone to proclaim us (patients) emancipated. Let’s break our own chains, and be our own liberators. Let’s demand that the providers and the payers give us an equal seat at the table, and then let’s … LEARN EVERYTHING WE CAN TO BE PRODUCTIVE CONTRIBUTORS TO THE HEALTHCARE SYSTEM. That last statement is…

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Dec 24 2012

Immediate Jeopardy: I’ll take Medical Errors for $100,000!

By e-patients, healthcare industry, participatory medicine

Accountable care. That’s one of the central pillars of healthcare reform/Obamacare/the Affordable Care Act. Given that Obamacare is built on transforming Medicare, the payment system from which all Holy Billing Codes and the pricing attached thereto flow, Accountable Care Organizations (ACOs) would seem, given their name, to be about accountability for care, right? Not so fast. The “accountable” in ACOs has more to do with accounting than accountability. An ACO is defined as a network of doctors and hospitals that shares responsibility for providing care to patients. In essence, that network agrees to manage all of the health care needs of a minimum of 5,000 Medicare beneficiaries for at least three years. The ACO is indeed accountable for providing care, yet that 5,000-Medicare-beneficiaries-for-three-years is as much about accounting as it is about patient care. Real accountability in healthcare is an elusive thing. I’ve said many times that there are no guarantees in medicine, other than that there are no guarantees in medicine. That does not mean, though, that we should expect mistakes. Medicine is a human effort, with human failings embedded within it. We should help ourselves, and the medical-industrial complex, though, by taking advantage of the information available to us – patients, providers, all of us – to determine where to get the best and safest care. jeopardy clue tileAccountability, in the accountable-actions definition, was codified in a California law that went into effect on January 1, 2007. That law gives the California Dept. of Public Health the power to fine hospitals up to $100,000 per event for what they call “immediate jeopardy”, which is defined thus: An immediate jeopardy is a situation in which the hospital’s noncompliance with one or more requirements of licensure has caused, or is likely to cause, serious injury or death to the patient….

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Apr 16 2012

I learned about patient advocacy the hard way

By e-patients, healthcare industry, participatory medicine

Well, 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…

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Sep 21 2011

Digital Patient Bill of Rights: check!

By cancer, e-patients, healthcare industry, participatory medicine

A group of about 20 passionate e-patients, including e-Patient Dave his own self and yours truly, gathered around a biiiiig table on Monday in Philadelphia to talk about what an e-patient Bill of Rights might look like. I have to give a shout-out to my buddies at WEGO Health, particularly Jack Barrette, Bob Brooks, and Natalia Forsyth One conclusion: don’t call it the e-patient Bill of Rights. Since we’re talking digital healthcare, let’s call it the Digital Patients Bill of Rights. That conclusion was reached hours into the discussion, which ranged over topics from chronic conditions like diabetes, HIV/AIDS, multiple sclerosis, rheumatoid arthritis, lupus, multiple sclerosis, and fibromyalgia to acute illness like cancer. We had about four hours to hammer out a first-principles statement, and Mark Bard of the Digital Health Coalition deserves the Cat-Herding Nobel Prize for keeping a group of vocal, passionate, diverse e-patients on task. To lift directly from the Klick Pharma blog (Klick was one of the sponsors of the event, along with Pixels & Pills, Health Central, Care Coach, Kru Research, Radian 6, Red Nucleus, Think Brownstone, Verilogue, and a who’s who of health media sponsors): “After an intense four hours, we were able to reach consensus on the following key messages as a foundation to a Digital Patient Bill of Rights: Shared access to my data Attitude of collaboration and overall respect The patient is the largest stakeholder Transparency and authenticity across all areas Voice of the patient is a legitimate (clinical) source The right to efficient communication with providers who utilize the technology that we need” It’s a start. A damn good one. The Klick Pharma blog post also has a full list of all the e-patients who participated in the conversation. It was quite a day. Some of my thoughts about the conversation, and the event: Those dealing with chronic conditions have an even deeper need to be activist e-patients. They also have a greater level of knowledge, and can be true leaders in this on-going discussion. Each healthcare…

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