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Jun 23 2013

Stetho-Snopes: Time for some rigorous myth-busting in healthcare?

By healthcare industry, politics, technology

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 image

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.

Jun 11 2013

Did someone say “palooza”?

By healthcare industry, politics, technology

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.

hm13 logo

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!
  • health data palooza iv logoBest 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 … ?

Mar 08 2013

Snowflakes and bitch-slaps at the ePharma Summit

By healthcare industry, technology
WEGO pills pharma images

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:

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.

Jan 01 2013

2013 Manifesto: short and salty-sweet

By healthcare industry, technology

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, there’s less risk that I’ll be screaming. Given that one of my core purposes in life is working to effect positive change in the healthcare industry, I can wind up screaming pretty easily if I don’t keep myself in check.

Barking = screaming in my world. We’re all about avoiding the screaming wherever possible. That does not mean that I’ll dampen my ferocity. Hell to the no. What it does mean is that I’ll find ways to wrap the bitter medicine in a big lump of maple sugar. “Bitter medicine” is hard truth about how healthcare has to shift from paternalism and a gold-rush mentality; the lump of maple sugar (and my biggest challenge) is finding the humor that will make that medicine go down … without resorting to barking.

Those are my Simple Rules for 2013.

Happy New Year.

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