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…
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: 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…
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…
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…
When you hear the word “monopoly,” does it fill you with a warm and fuzzy feeling? (Unless you’re Hasbro, you really should say no, unless you’re a cyborg.) Healthcare is a monopoly. We can’t DIY cancer treatment, or surgically repair a broken hip for ourselves, so we have to go to the medical-industrial complex to regain our health if we wander into the weeds, health-wise. We also have deep difficulty accessing pricing information. I’ve talked about that here over the last few years. Maybe not a monopoly in the financial-reg sense of the word, but it sure is mighty like a game of Monopoly. This “chaos behind a veil of secrecy” (all credit for that phrase belongs to healthcare economist Uwe Reinhart) has created the impression in healthcare customers that there’s no way to tell what something will cost before you buy it. You checks the box and takes yer chances. No Get Out of the Hospital Free cards. No pass-the-admissions-counter-collect-$200 option. That’s a rotten way to run a railroad (one of the original monopoly industries in US history), and an even worse way to run a hospital. Dan Munro wrote about this, and the star-chamber cabal that actually sets the prices in healthcare, the RUC, on Forbes.com yesterday. I’ve talked about the RUC myself. And the search for price transparency, which seemed such an outlier activity just a couple of years ago, is now popping up in the Well blog on the New York Times site, as well as on Reuters. The Reuters piece has the addition bonus of quotes from my buddy Jeanne Pinder, founder of ClearHealthCosts.com. (Yesterday was a big day in medical price transparency.) This is the central reason I registered the hashtag #howmuchisthat with Symplur, the healthcare hashtag registry. We all have to start demanding that prices be visible, and that the RUC stop cabal-ing…
Last year’s look-ahead for 2012 was a 5-point manifesto. Reviewing progress against that list, I see that I did pretty well, with only #2 falling a little short – which is not a bad track record. This year, I’m keeping it tight. I’m going with a 2-rule manifesto. Rule #1: Be accountable We’ve all got metrics to measure ourselves against. Revenue, connections, sales, errors, accomplishments – all of those are important. The trouble comes when you focus too much on one area, which usually means that other important metrics wind up taking a back seat. If you focus exclusively on incoming revenue, you might miss some mistakes that will cost you at least some of that revenue. If you concentrate only on building more connections in the industry, you might lose some long-term relationships that are just starting to ripen. For me, accountability this year will be tied to two metrics: raising the revenue gained from the speaking side of my business, and widening my marketing net beyond the mid-Atlantic region. Tracking both will be easy, and each will challenge me to focus very tightly on activities and outreach that will move my game-plan forward. Accountability – at least here at Mighty Casey Media – will be baked in to the spreadsheet I’ll use to track that game-plan. What accountability will you bake in to your 2013 goals? How will you track your progress? Who will you report to? That last one is a challenge for me, since I’m a solo-preneur. Stay tuned, since one of my accountability check-boxes will be reporting progress here, on the Mighty Mouth Blog. Rule #2: Laugh more, bark less That’s a purposeful scrambling of the “wag more, bark less” bumper sticker I see … everywhere. My version of wagging is laughter. If I’m laughing,…
This week, NPR’s Marketplace aired a piece on what I have taken to calling the “black box of healthcare” – pricing. There is a committee, called the RUC, set up and run by the American Medical Association, that reports to CMS (the federal unit that runs Medicare and Medicaid) on relative value numbers for the thousands of medical procedures that wind up as billing codes in Medicare and your health insurer. Those relative value numbers = PRICES. This isn’t considered price-fixing under anti-trust rules because the RUC reports to CMS, which then publishes the numbers on the Medicare reimbursement rate schedule. So the AMA isn’t publishing the prices, CMS is. Fox, meet henhouse. Or, stated in another way: airplane, meet the black box that is making you crash and burn. The Marketplace page linked in the 1st graf has plenty of linkage to additional context for this issue. Read them, and weep. How is it that an industry whose aggregate cost is now at close to 20% of US GDP gets to set its own prices, and then have them published by the federal government as The Official Price List? It’s called effective lobbying, and it’s so effective that it’s essentially kept access to the pricing committee process a secret for decades. Which makes it pretty clear why so much of our GDP goes to healthcare, doesn’t it? The sound bite in the story that I found the most hilarious was from Charlie Baker, the former CEO of the Harvard Pilgrim health plan in Massachusetts. His quote: By having a process that for all intensive [sic] purposes isn’t a public process, and doesn’t appear to actually be accountable to much of anybody, I think that’s kind of un-American! I find this hilarious because Harvard Pilgrim is a member of America’s…
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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