John Green of vlogbrothers breaks down why healthcare costs in the US are so crazy. (Hey, John – I feel dizzy, too!)
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.
It was recently revealed that an Excel error contributed to the European fiscal crisis, and a continuing global economic recession/depression. Paul Krugman called the revelation the Excel Depression in the NY Times. Certainly lives are at stake when the success or failure of large economies are at risk, but not nearly as many lives as are at stake every day given the lack of transparency (and even, in some cases, plain truth) in bioscience research and medical outcomes reporting.
Ben Goldacre gave a barn-burning TED talk, “Battling Bad Science,” in 2011. He gave another one in 2012 in which he called the data manipulation in scientific research the “cancer at the core of evidence-based medicine.” His point? We cannot make a meaningful decision in the absence of ALL the data.
Tim Berners-Lee, the man who invented the actually-useful-to-humans WWW part of the Internet, has consistently called for raw data – ALL the raw data – NOW.
Paul Levy, the former CEO of Beth Israel Deaconess Hospital, recently blogged about the failure of the Journal of Pediatric Surgery to reveal, in a report on a surgery for sunken-chest deformity, a widely-reported death of a teenage boy after said surgery, even though that boy’s case is used as an example of avoidable medical error in safety bootcamps for medical interns and residents. Boggles the mind, doesn’t it?
Even if the data is fully reported, the PR geeks who write up the announcement of results might get that report 100% wrong. Witness the recent contretemps over a University of Chicago study on patient engagement, shared decision-making, and healthcare cost control. A full outline of that mess, by ePatient Dave deBronkart in Forbes, will give you 411 on that story. The Cliff’s Notes: it was a post-discharge survey, not a full study; it measured attitudes, not outcomes; and the press release was sent out on a holiday weekend, ensuring both pick up (slow news cycle) and lack of follow up.
Given the general public’s lack of understanding of science, the scarcity of journos who can interpret same for said general public, and the scale-thumbing going on in bioscience research, what’s to be done to reverse this disease-mongering and full-on prevarication (look it up) trend?
Stetho-Snopes
How about a Snopes.com for medicine? We could call it … Stetho-Snopes. There’s certainly enough interest in the subject on the part of people and organizations. The challenge is to take all the small villages of interest across the globe and give them a repository for what they find, and what they can debunk.
Ben Goldacre is walking his own talk with an effort called AllTrials, a petition that’s demanding open data from all sources of medical research. Organizations like the Robert Wood Johnson Foundation are working on making medicine and healthcare more transparent and accessible for patients. The Society for Participatory Medicine‘s membership is committed to the same mission: transparency and collaboration across the continuum of care.
How about we all band together and make RAW DATA NOW a reality in medicine? GIMME MY DaM DATA. Now.
I’m still recovering from the month of May. I was all up in the healthcare, pretty much 24/7, which differs not-much from my usual roll, other than that in the period of three weeks, I was in DC for eight of 21 days, May 14 through June 5, attending HM13 (the annual meeting of the Society of Hospital Medicine, which I covered for The Hospitalist magazine podcasts) and Health Data Palooza IV as just-me on a Consumer Circle scholarship.
What I saw and heard at both conferences made me hopeful for the future of healthcare … sort of. As inspiring as both of them were, I found the SHM conference more of a hope engine for just-e-patient me than the rah-rah tech-fest that was #hdpalooza. Granted, HM13 was organized and run by the medical society that has a big upward swing on its membership, and on the income of said members, which means that there was a breadth and depth of content that wouldn’t be available at non-clinical conferences.
I got plenty of mental floss out of both of them. Here are the high (and low) lights:
- Hands-on practicum at HM13 featuring portable ultrasound guided bedside procedures for the hospitalist. You have not lived until you’ve seen a hospitalist put a central line in a Costco chicken that’s tricked out with liquid-filled tubes serving as major blood vessels. Training that is both fun and practical transmits sticky knowledge. And I’m not taking the grape juice that was cast in the role of blood for this session.
- Dr. Alberto Puig’s History of the Physical Exam HM13 breakout session offered laughter (imagine doing a pelvic exam on a standing patient fully garbed in Victorian bustle-wear), horror (doctors assessed health status for centuries by *tasting* patients’ urine; and let’s not forget those lovely leeches), and a whole lot of thought-provoking questions about what a physical exam means, and how important touch is to the practice of medicine.
- Cognitive Diagnostic Error workshop, where a team of patient safety experts from UPenn demonstrated the risks of thinking too fast in clinical situations. Slower thinking is harder, but it will prevent mis-diagnosing and other medical errors.
- Meeting Dr. Gordon Guyatt, the man who coined the phrase Evidence Based Medicine, and watching him shred study after study using funnel plots of the study’s data. Eye-opening doesn’t begin to describe that particular HM13 experience.
- A cost transparency workshop! At a hospital medicine conference! Led by Dr. Chris Moriates from UCSF, this session showed the power of shared decision-making across the clinical team *and* included the patient/caregiver in the equation. We’re winning!
Best of the Best at Health Data Palooza? AthenaHealth CEO Jonathan Bush’s keynote, where he was by turns hilarious, pointed, inspiring, and infuriating – all good things, as far as I’m concerned. His best line? “Obama was right. There, I said it.” After which he went on to again call the feds on the carpet for lack of testicular fortitude when it comes to setting up a national health data system. He has a great post on The Health Care Blog about his time on the platform, and his message.- Biggest disappointment of #hdpalooza? Atul Gawande moderated a panel on the new payment models emerging from Obamacare. Given his writing on healthcare costs, I hoped for a vibrant discussion on how health IT systems are enabling better cost visibility and management, for both the system (providers/payers) and users (patients). Twas not to be. What the session amounted to was a single visual involving CME credits for clinical folks in the audience being at risk if any panelist wound up mouthing commercial messages, accompanied by a round-robin of words into microphones from a sausage party of dude-panelists. Even for an IT geek, this was a snooze-fest of epic proportions. Huge disappointment.
- Channeling the late Richard Dawson in a game show session called Family Feud’n, where providers and payers battled over what patients said they wanted as value from the healthcare system … well, it was eye-catching. It was funny, in parts. Mostly, I wondered what the hell they were trying to accomplish. Healthcare providers and healthcare payers are forever set in opposition? Patients are just objects, the “product,” and don’t get a voice other than in surveys? I call #fail on that one …
- Illuminating Disease at the Speed of Light session was a highlight, with researchers and data modelers teaming up to show how data visualization can accelerate progress in clinical studies of disease. I was riveted, and I’m not even a full-on big-data geek.
- Worst part of both conferences? The running from pillar to post to attend the sessions I most wanted to see, followed by sitting in said session for up to two hours. Seriously, what is up with healthcare conferences that make us sit on our keesters when getting up and moving around would feel so darn good? Conference organizers should start figuring out how to do “walking sessions” that mirror the rise of walking meetings and standing/walking workstations.
Still glaringly missing from all of this rah-rah is the actual, real-world voice of the patient – HM13 can be (somewhat) forgiven for that, since it’s a medical society annual conference. I will note that, in all my interviews for HM13 podcasts, the question, “How can patients help?” was warmly welcomed by everyone asked, and answered with enthusiasm and insight. Figuring out how to break the walls down between clinicians and patients – “gimme my damn data,” two-way edition – using health IT systems as the wedge seems to be a place to start. But letting patients help there is utterly crucial.
Speaking of sitting too long … time for a bike ride to my polling place to vote in today’s off-year election primary in my state. I’m voting for a guy who’s worked on opening up health data. Win/win … ?
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
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.
image credit: Grant Cornett | NY Times
Second, a post on the TIME Healthland blog about the insanity that is medical billing.
image credit: TIME Magazine
Go ahead. Read, get angry, get engaged, DO SOMETHING.
Lather, rinse, repeat.
I had the great good fortune of being asked (by WEGO Health) to participate on a panel titled Social Media for Pharma: A Match Made in Heaven or Hell?at the ePharma Summit in New York (#epharma) earlier this week. When the opportunity presented itself, I asked to be registered for the whole event so I could do my fly-on-the-wall thing by attending some sessions and schmoozing in the exhibit hall.
What did I learn? I learned something I already knew: pharma, and healthcare in general, talks a good game at the corporate level about “engagement” when it comes to patients. However, their use of the word tends to run along engagement-as-shiny-object-syndrome lines; in other words, passive message consumption is the desired model, since two-way dialogues are problematic, with pharma afraid of FDA bitch-slaps in the form of warning letters and healthcare in general sweating bullets about the powerful bitch-slap known as the HIPAA violation, given the $1.5M fine potential.
I understand their aversion to drawing the gimlet eye, and the ire, of the feds when they’re considering how to communicate with their marketplace. Pharma is a conservative, slow-to-innovate business that’s focused on shareholder value and ROI for said investors, given that they can spend billions developing a new drug for market before they can sell the first pill of said wonder drug. At least, that’s what pharma balance sheets and annual reports tell us.
Pharma is anxious to open dialogues with its customers – the real customers, patients – but isn’t sure how to go about doing that without winding up in deep kimchee with federal regulators. That was the purpose of the panel I was on: to let pharma know what kind of conversation patients were looking for, and what we’d like to hear from the pharma industry. Our group members were:
- Michael Weiss, Crohn’s Health Activist
- Tiffany Peterson, Lupus Health Activist
- Dee Sparacio, Ovarian Cancer Health Activist
- Yours truly, wearing my Cancer for Christmas Breast Cancer Health Activist hat (along with several others, making me very distinctive as usual)
We all said that we would welcome some real dialogue with pharma: not sales language, but human language. Stop telling us to “ask our doctors about” – which is useful, but only half of the conversation equation. Pharma should ask patients how and if they – pharma and its products – are actually helping. The snowflakes in the post title aren’t the snowflakes that flurried a bit in New York on Thursday, they’re from my exhortation from the podium (and everywhere else):
“If we’re all snowflakes, unique in our genomic makeup and completely different from any other human on the planet, where’s my snowflake medicine?”
I know that snowflake medicine is not only possible, it’s here: pharmacogenomics is a new science, but it’s in commercial use and has been for a few years. I’d like to know why it isn’t part of every single prescription decision, but I’m an impatient early adopter. I know that pharma is still operating on a population health model, but that is so 20th century, dudes. Real innovation is already happening, yet pharma’s business model is still in “find the blockbuster drug that works OK in 60-70% of the population with Disease X, and we’re in the money!” mode.
My prescription for pharma execs is to read Eric Topol‘s The Creative Destruction of Medicine: How the Digital Revolution Will Create Better Health Care– that will both scare them to death (no more population-based medicine) and show them the map to the future (agile development of targeted therapies). Give me and everyone else our snowflakes: many of us are literally dying to get hold of ’em.
My takeaway from #epharma? Patients are still seen as exotic creatures by pharma, but I sense that they’re anxious to learn more about us beyond our diagnoses. My recommendation: Look for influencer patients in the health communities that use your products. Open a one-on-one dialogue with them, ask them how your products are perceived. Explore opening up some private-channel community conversations (NOT on social media!) that can involve your clinical team, doctors who prescribe your products, and the patients that take them. Listen and learn.
If you need help wrangling internet and social rules for pharma out of the FDA, tell us – patients – what you want to accomplish, and let us storm the castle. Embrace the snowflakes. Avoid the bitch-slaps. Help create better global health. Patients are the only real blockbuster drug left in the 21st century.
Thanks for listening.
image credit: Alec
I talked about Steve Brill’s epic TIMEpiece Bitter Pill: Why Medical Bills Are Killing Us last week. I’m still absorbing the cost data he uncovered in that piece, and the graphics and images alone are worth the $5.99 cover price to get a physical copy of the magazine. The stories he shares about the healthcare industry’s Great & Powerful Oz – the hospital chargemaster price list – do reveal a big reason for the out-of-control price spikes in US healthcare.
As brilliant, informative, and galvanizing as Brill’s piece is, I believe he dropped the ball just short of the goal line when, in his wrap-up recommendations, he talks up solutions that nibble around the edges of the cost problem, but don’t address its core cause: our crazy 3rd-party payer system.
Take a walk with me through the hallways of US healthcare history. Here’s the timeline:
- 1880s: Chloroform in use as surgical anesthesia (thank GAWD).
- 1900s: The American Medical Association (AMA) becomes a big player.
- 1900s: Doctors no longer work fee-free in US hospitals (see bullet #2).
- 1910s: America lagging behind European nations on health insurance (already?).
- 1920s: Political complacency (must have been all the bathtub gin) leads to a “what, me worry?” attitude toward rising medical costs.
- 1930s: Oops, we broke the stock market. Blue Cross, against insurance industry advice, starts offering hospital insurance coverage.
- 1940s: Stiff wage controls in WWII defense plants lead to employers offering health insurance to their factory workers. President Truman draws up national health insurance plan, gets beat up on the White House lawn by Congress.
- 1950s: Pharma industry becomes big player via antibiotic and vaccine development, along with meds for a variety of illnesses. Lots of proposals for national health plan, all get beaten up in public and sent home. Employer-based group insurance plans, offering coverage for “major medical” (hospitalization), become the norm.
- 1960s: First incidence of the idea of a “doctor shortage”. Hospital costs have doubled since the last decade. Specialist MDs now are 70% of working doctors. Medicare becomes law.
- 1970s: First HMOs established (rending of garments and gnashing of teeth followed swiftly behind). Medicare expenditures are growing faster than predicted. President Nixon proposes national health plan, gets beaten up on the White House lawn by Congress, complains about it on Watergate tapes. Starts “War on Cancer” instead.
- 1980s: In the Corporate Decade, corporations start to take over, consolidating hospitals and health systems. Medicare shifts to paying by diagnosis rather than by treatment, private insurers follow suit. Private insurers start complaining that “fee for service” is being exploited by healthcare providers, but say nothing about the corporatization of healthcare.
- 1990s: Healthcare costs now increasing at double the rate of inflation. President Clinton attempts healthcare reform, gets beaten up on the White House lawn by Congress. 16% of US citizens now uninsured. The AMA starts up the RUC (Specialty Society Relative Value Scale Update Committee), a star-chamber group that sets pricing for medical procedures in secret and hands it to Medicare. Price-fixing? Nope, cause Medicare publishes the list, not the AMA.
- 2000s: Medicare starts to be judged as unsustainable. The RUC is still working in secret. Healthcare costs rise 100% for the average family during the decade. Employer-based group health insurance faces economic challenges due to changing workforce demographics. Insurance premiums for health coverage double. Oops, we broke the stock market AGAIN.
- 2010s: Obamacare passes. President Obama’s repeatedly beaten on the White House lawn by Congress, but he gets a few licks in himself. Obamacare is a fat, wet kiss on the lips for the insurance lobby; how it affects the rest of us is a still-open question. Word starts spreading about the RUC.
In Bitter Pill, Brill’s “big bad devil” is hospital profiteering via the chargemaster. He highlights the hospital lobby as the most politically powerful group in any Congressional district, and calls out the high salaries of hospital administrators as a big driver of overall healthcare costs. He also recommends that pharma patents should be limited in their blockbuster-drug Monopoly game, and that medical malpractice caps need to be put in place – both of which I agree with 100%. However, Brill reserves most of his bitch-slaps for hospitals, and the chargemaster.
I counter that the chargemaster arose as part of an overall structure problem in US healthcare: like the rest of US business, it’s bottom-line and shareholder-interest driven. Customers (commonly called patients) aren’t given a thought in the corridors of healthcare power other than as revenue units. And that’s because we aren’t directly paying the bills. It really is all about the Bens, and who hands them over, in a commercial transaction – healthcare, and everywhere else.
I’m not saying that doctors, and hospital administrators, need to work for minimum wage. Hell, I don’t think anyone should have to work for minimum wage – who could live on $7.75 an hour, which amounts to the princely gross sum of $310/week? What I do recommend is starting to put value into the equation for patients, not just for shareholders and employee bonus assessments. Healthcare customers – patients – need to be able to assess the value of the healthcare services they receive, beyond the fact that it might be saving their lives. Yes, that’s certainly a high-value item, but it’s not part of every healthcare encounter.
Making that value apparent will require putting customers – patients – at the table for all parts of the healthcare conversation. Starting with (and yes, I know I’m a broken record on this) asking, always and everywhere, “How much is that?” when making a healthcare decision. We also need to take a long, hard look at employer-based group insurance, and maybe put it out to pasture. I’m on record with my thoughts that we should all be buying our own insurance – when various groups shout about “job killers,” I wonder if they’ve ever had to buy group insurance for their employees. That’s a real job killer, right there.
Access to cost information, hand in hand with outcomes information (available on Leapfrog’s hospital safety app and other outcome-metrics reporting tools), will reveal the value of a service. That’s what will really reform the system: patients asking questions, and working to get the full answers to them. And killing off the RUC would be a great idea, too.
Otherwise, we might as well go beat ourselves up on the White House lawn – hey, the Secret Service might help us out if we do …
Last week’s post called medicine in the U.S. a monopoly. I took some heat for using that metaphor from some of my economist and journo colleagues, and realized that I needed to make a clarification: Medicine is a game of Monopoly, not a true economic monopoly. My very-snark-infested point was, and always is, that the pricing model in healthcare in this country is about as fair as a crap game or, perhaps, a round of Monopoly.
More grist for my point arrived this week in the form of a TIME special feature, Bitter Pill: Why Medical Bills Are Killing Us. In it, reporter Steven Brill walks the reader through the chaos behind a veil of secrecy in healthcare pricing, starting with an under-insured man’s treatment at MD Anderson Cancer Center in Texas, which involved waiting – while wracked with the chills and fever caused by his non-Hodkin’s lymphoma – in a crowded hospital reception area until the check for his treatment cleared. He wound up having to use a credit card to pay $7,500 toward his medical costs before they’d initiate his chemotherapy. By the way, MD Anderson is a non-profit hospital. A close review of that man’s hospital bills revealed a 400% markup on many of the cancer drugs in his chemo treatments.
Another example in the TIME feature is one involving a $21,000 false alarm – a woman was having chest pain, and was taken by ambulance to a local hospital. After testing, it was discovered that she was suffering from indigestion. The Medicare billing for the trip would have been around 80% less than what the woman – who didn’t have insurance – was billed for the hospital visit. However, since she was 64, and not eligible for Medicare, she was billed $21,000. Yikes.
At the root of the cost determinations in both of these cases is the hospital’s chargemaster list – the Great and Powerful Oz of that hospital’s billing structure. When pressed, hospital spokespeeps will say “no one pays those rates, they’re just a guideline” or “those lists have been around forever, we only use them as a reference” – but uninsured and under-insured people are asked to pay them. Hospital executive will also say that the pricing on the chargemaster list is justified by the fact that the hospital has to provide charity care to indigent patients. While it’s true that there are patients who can’t pay for the care they receive, the vast majority of patients are covered by either a private health plan, or Medicare, or Medicaid. The rates paid by those payers are negotiated with the hospitals. Why can’t an un- or underinsured person negotiate a fair cash price, too?
The TIME story is a great read – it’s long, but it’s worth every minute of the time it will take you to read it. One patient story that stood out for me: a union guy in his 30s, with severe back pain, was treated by having a spinal-nerve stimulation device implanted. An outpatient procedure, with the nickel-and-dime hospital chargemaster billing adding up to $87,000 – the device itself, which wholesales for $19,000, was billed to the patient at $49,237 – put the patient over his annual health insurance coverage limit of $60,000. He was on the hook for $47,000 of that bill. Again, yikes.
This trip down the medical billing rabbit hole pinged my radar in the same hour that a post by Brian Klepper on KevinMD.com did. It appears that the American Medical Association’s star-chamber price-setting committee, the RUC (about which I’ve ranted here before), has been given a pass by a federal appeals court in Georgia on having to hew to the same public-interest rules that govern other federal advisory groups. In other words, the AMA gets to continue to set healthcare prices by setting the dollar value assigned to each and every billing code in healthcare. Fox, meet henhouse. Again.
What was I saying about medicine not being a monopoly? Well, OK, it’s not a monopoly. But it’s sure a shootin’ a game of Monopoly, with hotels on every single street. And patients just have to keep paying up after every roll of the dice.
