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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

caduceus dollar sign scaleI 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 for Participatory Medicine $30/year, very passionate and engaged membership which is driving real change

ClearHealthCosts.com, NY startup that’s crowdsourcing healthcare costs

Costs of Care, a 501(c)3 dedicated to helping patients drive down healthcare costs

Leapfrog Group’s Hospital Safety Score database

AHRQ (Agency for Health Research and Quality), part of the US Dept. of Health & Human Services

My 1st Disruptive Women in Health Care post, wherein I make some recommendations about break/fixing the health insurance model in the US (and yes, its headline is totally a shout-out to Jonathan Swift)

A year-later post from the Mighty Mouth blog with some additional suggestions on that break/fix, and why not doing it could be the hidden killer of the US job market

If anyone wants to ask questions, or know more, contact me! Honey, I got answers.

 

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.

addictive foods image

image credit: Grant Cornett | NY Times

 

 

 

 

 

Second, a post on the TIME Healthland blog about the insanity that is medical billing.

TIME cover

image credit: TIME Magazine

 

 

 

 

 

 

 

 

 

Go ahead. Read, get angry, get engaged, DO SOMETHING.

Lather, rinse, repeat.

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.

django lincoln caduceus imageAs 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 the core of what will emancipate healthcare: patients, providers, payers, caregivers, everyone. Shared decision making – along with “patient-centered”, that’s the new hot phrase in healthcare – can only exist if all parties are able to participate in sharing the decision-making. We must learn how to understand the language of medicine, including research statistics (by the way, many doctors aren’t great at that, either). We must learn to apply critical reasoning to what we see/hear/read in the media about risks and trends in health and disease. We need to work on getting a seat at the research table to give a hard shove in the direction of making clinical research less ivory-tower and more boots-on-the-ground.

Some recommended reading for those who’d like to emancipate themselves:

Society for Participatory Medicine blog

ePatient Dave

Susannah Fox

Dr. Ted Eytan

and our movement’s own Rosa Parks (or, dare I say it, our own Django?):

Regina Holliday

Let’s liberate ourselves, shall we?

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. A situation is an immediate jeopardy at the time it occurred.

Let’s play Immediate Jeopardy! I’ll take Medical Errors for $100,000! And the question is, “How much were California hospitals assessed in the most recent immediate jeopardy bitch-slap, Alex?” [the answer is in the blue tile]

Since the California law went into effect, 254 immediate jeopardy errors at 141 hospitals have been identified and fined, for a total of $10.4 million. $7.6 million of that has been paid. An article on Health Leaders Media gives the full story on the most recent round of errors, and the fines assessed. There’s also a link to the California Dept. of Health site, where all the incidents and fines since the law went into effect are available with just a few clicks. Some of those reports are truly alarming, even though they’re written up in very spare prose.

Here’s where becoming an e-patient delivers solid value: you learn how and where to look for reliable metrics on healthcare. Anyone can be an e-patient. Here’s how it worked in this instance, when I wanted some additional context for what I read in Health Leaders.

I read the article, and then, in a new browser tab, surfed over to a recent post on e-patients.net about the new Hospital Safety Score tool from The Leapfrog Group. I hunted up the safety scores – which run on an A through F scale, just like a school report card – for the 10 hospitals fined in the most recent round of Immediate Jeopardy. What I found was this:

  • Five of the fined hospitals were A-rated, yet one of them was fined at the highest level ($100K), twice, for repeated incidents
    Of the other five facilities, two had B grades, and three got Cs
  • What did I take away from this dive into the medical-quality-metrics pool? What I take away from each dive I make into the healthcare ocean: transparency in healthcare is still in its infancy, but it’s getting clearer and clearer every day. Will it ever be crystal clear, letting patients make choices that are 100% guaranteed to have a great outcome? Please re-read the 3rd graf of this post for the answer there (hint: it’s “no”).

What we – patients, providers, payers, all of us – can do to make healthcare as clear and careful as humanly possible is to continue to call for immediate reporting of problems, to participate fully in each transaction we have with the industry, to share lessons learned when outcomes don’t match reasonable expectations. By helping each other heal the system, we can help heal ourselves in the process.

Everybody wins.

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

e-patients imageOne 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 consumer – formerly known as “patient” – must take action and responsibility on his/her own behalf. And not shut up until they get what they need to achieve the best health possible.
  • Having town-hall meetings across the country, inviting community members – healthy, chronic, whatever – to attend, to share, and to learn how to both be consumers of healthcare and advocates for the family members who depend on them, would be a great way to keep the ball rolling and drive wide awareness/support for empowered, engaged e-health.
  • Those of us who’ve taken a trip through the medical care car wash have a duty to share our stories, to lead, to educate, to shake up the status quo, to effect change. We get the elected representatives, and the healthcare, we deserve.

Have any thoughts on what you’d like on your Digital Patient Bill of Rights? Tell me.

It’s your health, your healthcare, your life, your choice. Exercise it.

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