This story from PBS Newshour clearly shows how important it is to ask questions, and shop around, when it comes to prescription drug prices.
Think a generic drug guarantees a lower price? Not so much. Watch this story, and learn how the same generic drug can cost anywhere from $11 to $455. The best way to get the lowest price? The same way you shop for shoes, or appliances: research online, ask local retailers, and make an informed decision.
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 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.
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 …
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:
and our movement’s own Rosa Parks (or, dare I say it, our own Django?):
Let’s liberate ourselves, shall we?
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:
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.
WEGO Health is an online network of people from across the globe who use the internet and social media to connect around health and share health information.
WEGO calls us Health Activists, and they’ve created a special awards program to recognize those Health Activists who are making a real difference in the online health community: click here to find out all about it. Health Activists are doctors, patients, caregivers, family members, any and all folks who care about their own health and the health of their families and communities.
I’ve signed up to be an Awards Ambassador – that means that I’m doing what I can to share the WEGO Health Activist Awards with my audience to make sure that all Health Activists are recognized for the efforts they make every day. Take a spin over to the nominations page and recognize your favorite health leaders. There is no limit to how many people you can nominate so make sure to recognize everyone that you follow, fan, or friend. WEGO Health has 12 different categories so everyone should fit somewhere!
Is there someone who inspires you to get and stay healthy? Is there someone whose online presence helps you manage a chronic condition? Is there a healthcare professional in your life who has guided you, your family, or your community toward better health with their work on the web? Nominate ’em!
There is no limit to how many people you can nominate so make sure to recognize everyone that you follow, fan, or friend. WEGO Health has 12 different categories, so there’s a slot fo any kind of online Health Activist!
So go on – NOMINATE!
I’ve been quiet for a while. Been doing my one-armed paper-hanger imitation – in a good way – which has taken up too much of my time and attention.
She’s baaaaaaaaack!
And she’s almost 4 months overdue for her annual mammogram. Yep, a breast cancer survivor is late for her mammo – but it isn’t due to lack of effort on her part.
Here’s the challenge: I have the money in hand for a diagnostic mammogram. However, there is *not* enough money in hand for a specialist visit to order said mammogram. And since your (not so) faithful correspondent here has no health insurance – thank you, cancer, you rat bastard – that’s a wrap.
My frustration is magnified by my certain knowledge that the reason the mammogram has to be *ordered* is that said order means that the insurance company will pay for it when it’s billed.
Of course, since I have no insurance, that’s why *I’m* paying for the mammogram. But I can’t get a mammogram, since there’s no order for said mammogram to ensure insurance payment for same.
Crazy yet? Yep, me too. I’m also totally steamed … which is why it’s warm in here.
We have created a healthcare payment system in the US that flies in the face of logic. I’m not the only one who thinks so, either. My buddy e-Patient Dave is banging away at some of the same issues as he tries to be a responsible healthcare customer. I’m on record with what I think are some valid health payment reform suggestions over on Disruptive Women in Health Care.
And then there’s the ever-epic Jonathan Rauch article in National Journal that became an also-epic YouTube video exploring the issue “If Air Travel Worked Like Health Care”. All I have to say is … GAH!
On both the get-a-mammogram issue, and on healthcare in general. As the Supremes hear oral arguments on what’s called either Obamacare or the Patient Protection and Affordable Care Act (depending on whether you think health insurance is something we all *should* buy for ourselves), it might be time for all of us to face some hard facts.
The most basic of which is: until we start acting like customers instead of meat puppets, the healthcare delivery system in this country will be stacked against access and transparency.
With me? Think I’m nuts? Spill your guts in a comment!
Healthcare providers are waking up and realizing that they need to partner with their patients to get better outcomes for their facilities and practices, and for their patients. As Accountable Care Organizations (ACOs) get more and more press, the healthcare delivery side is the entity being held accountable.
Patients must step up to the bumper on accountability, too.
Two phrases have entered the medical lexicon thanks to the Patient Protection and Affordable Care Act, a/k/a “healthcare reform.” PPACA is not actually healthcare reform, it’s health payment reform, but I digress. The two phrases are “patient-engagement,” and “patient-centeredness.” Doctors are being told that they must engage with patients, and offer care centered on their patients’ needs … but that engagement and centeredness message is not being simultaneously driven toward patients.
Therein lies an opportunity for #fail.
Patients need to take responsibility for their health, their actions, and their care. I’m not saying that we should shut up, sit down, and do what we’re told. What we must do is ask questions, work to understand the answers, and then do what is in our own best interest, health-wise.
That does not include ignoring instructions to cut down on salt or saturated fats. It most certainly does not involve living on drive-thru meals and expecting a prescription to resolve your expanding waistline or blood sugar numbers.
In this month’s HealthLeaders, Joe Cantlupe talks about how doctors are making more robust suggestions to their patients, with the goal of turning medical care into a true partnership between patients and providers.
Healthcare providers need to step up and work with their patients, turning healthcare into a team sport.
Patients MUST step up and take responsibility for their choices as well as a full share of decision-making.
That’s my story, and I’m stickin’ to it …
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:
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.
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.
I’ll totally get one. Srsly.
I confess that I’d happily get a barcode tattooed on my neck if it meant I’d never have to fill out another ****ing health history form in a doctor’s office.
I’m totally serious.
Paper records are so … 19th century. With the advent of the current iteration of “health care reform” (which is really “health INSURANCE reform,” but that’s a blog post for another day), much has been made of the importance of Electronic Medical Record (EMR) systems in building a national Health Information Exchange (HIE).
Medicine = Acronym World. The Pentagon are pikers when it comes to fogging the battlefield with impenetrable letter-fication.
21st century health care certainly must involve a lot of easily-shared data, with health history and diagnostic information traveling literally at light speed between doctor’s offices, hospitals, and clinics. Not only does it speed care, it can ensure safety: the right record, with the right patient, makes the right care clear.
The thorny-issue part is this: whose data is it, anyway? Doctors certainly need to have full access to all the data on patients they’ve treated. Hospitals have to keep records on the people they’ve treated on their wards, in their clinics, and in their ORs. Payers (insurers, Medicare, Medicaid, et al) need data access to pay claims, track demographics, and create statistical and financial forecasts. And patients must have access to their own data, at minimum to vet it for errors, at best to own a full copy of their health history since birth to share with providers and care-givers.
I spent 8 months trying to correct an error on the report for the breast MRI I had in 2008 as preparation for my cancer surgery. The report said “family history of breast cancer.” NO. I was Patient Zero, there was NO family history of breast cancer. I fought for eight months, and I’m still only about 90% convinced the error is completely expunged. Patients need access, and we also need easy recourse to error-correction.
Back to EMRs and data exchange: access to patient data must be completely available to all concerned parties. That means doctors, healthcare facilities (hospitals, clinics, et al), and PATIENTS. However, the discussion about healthcare technology almost never includes patients. We’re considered, at best, bystanders; at worst, annoying insects.
E-Patient Dave DeBronkart – Mr. Gimme My Damn Data himself – was the 1st person I heard use the term “e-patient”. The E stands for empowered, engaged, enabled, equipped, equal – not electronic, although that’s certainly a supporting foundation for the e-patient movement. E-patients are usually placed in the “annoying insect” category by healthcare providers who don’t want to share – which can include payers, who can turn a simple record request into a Bleak-House level of bureaucracy. The most epic story in recent history, IMO at least, is Regina Holliday’s now-famous 73 Cents post (and the painting it talks about) – charging patients for access to their own data (at 73 cents a page) borders on the immoral, if not the criminal.
In the long slog through working groups, committees, implementations, and reports-to-the-board that is EMR and HIE development, don’t let the healthcare system leave us – the patients – out of the conversation.
It might be their data, too – but at root, and always, it starts with us. It’s theirs, yours … ours.
© 2024 Mighty Casey Media.
