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Oct 29 2013

Healthcare Talk: Patients with Power

By healthcare industry, technology

I had the chance to participate in a Hangout on Air with Kathi Browne, who is the founder/moderator of the Google+ Healthcare Talk community. If you’re on G+ and in the healthcare industry, that community is one you want to join – lots of discussion on topics from healthcare policy to social media to patient safety to care quality. It’s invitation-only – if you’d like to join, hit the G+ link above and ask Kathi to add you to the community. Last night’s (Monday, Oct. 28, 2013) Hangout on Air was a conversation with Bill Guthrie, CEO of Patients with Power, a new web-based platform for shared decision-making for cancer patients and their oncology teams that’s in beta at UCSF’s lung cancer oncology unit and also as a survival-planning tool at Cornell-Weill/New York Presbyterian’s ob-gyn onco unit. Decision-making for cancer patients – shared, or not – is a firehose. Patients with Power does what its name promises, it gives patients access to the information they need to make an informed decision, information that’s solidly based in evidence-based medicine since it’s based wholly on National Comprehensive Cancer Network (NCCN) guidelines for cancer treatment. Bill has given me a demo of the tool, and it’s superb. He also did a walk-though last night. Give a watch/listen: //www.youtube.com/embed/FPTIjDwirDI

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Oct 10 2013

“Patients included.” On ‘roids. In a good way.

By e-patients, healthcare industry, participatory medicine

I had the great good fortune of being tagged as an ePatient Scholar for the 2013 edition of Stanford Medicine X. That allowed me to sit at the feet – literally, since the ePatients were the mosh-pit for the three day conference plenary stage – of some of the best and brightest minds in healthcare. And guess what? Many of those best/brightest were … PATIENTS. MedicineX (a/k/a MedX and #medx) is the uber Patients Included medical conference. It grew from seeds planted at conferences like Health 2.0 and Patients 2.0, for which seeds-to-beautiful-flowers gardener credit goes to Dr. Larry Chu and his team from Stanford Anesthesiology AIM Lab, who seem to prestidigitate rabbits out of hats without breaking a sweat. Or the hats. Or the rabbits. MedX – in my opinion, at least – trumps every other Patients Included event by not just including patients, but by putting them front and center throughout the program. In fact, I cannot think of a session that I attended that didn’t have someone who was there primarily as a customer of healthcare (commonly called “a patient”) on the platform, presenting or participating in a panel discussion. My ePatient socks were knocked off from jump thanks to the opening keynote by Michael Seres and Marion O’Connor on “The New Engaged Patient,” which was the morning keynote on Friday. Michael uses his blog as his personal health record, up to and through a lifetime battle with Crohn’s disease that led to his becoming the 11th patient to ever receive a bowel transplant, and only the 6th to survive that transplant experience. Michael is hilarious, and Marion is exactly the sort of caring brainiac any patient would like bedside as s/he battled a life-threatening illness. Here’s the video of their session: The rest of the day played out as a firehose of ePatient awesome,…

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Sep 11 2013

#HCSM Review 36: Exploring healthcare costs, access, e-patients as experts

By healthcare industry, media commentary, technology

Welcome to the MightyCasey–hosted edition of the HealthWorksCollective #HCSM Review, a peer-reviewed compendium of timely, on-topic writing about healthcare from across the web. Last Friday, I put out a call for posts about healthcare costs and/or health insurance innovation for the HCSM community. Here’s the brain candy that flew over the MightyCaseyMedia transom: First up: an examination of STD occurrence alongside STD testing costs in the New York metro area from ClearHealthCosts.com (@chcosts), written by Sherry Mazzocchi. This is a deep dive into the incidence of STDs across New York City, with snapshots of what consumers actually pay for STD testing at a number of facilities across the region. Runs from $0 (for members of a subscription medical practice) to $600 for women who visit a Westchester County practice. Like Uwe Reinhardt has said for years, healthcare pricing is chaos behind a veil of secrecy. For patients looking to pierce that veil and direct-pay for their care, ClearHealthCosts’ founder Jeanne Pinder offers up this post – New ways of paying: Cutting out the middleman. Seems like everybody’s looking for a better way to hold down health costs. In a number of cases, that means patient and provider are getting together directly, without the middleman (the insurance company). You could start asking, “How much is that?” and acting on the answer. With Oct. 1 and the dawn of the ACA’s new health insurance marketplaces, Jeanne Pinder shares What it means to you: Oct. 1 and buying health insurance. Maybe you avoid the topic of health insurance, but you can’t any longer. If you’re not covered by employer insurance, Medicare or Medicaid, you will need to know things about buying insurance (or choosing not to buy it). Her post offers some actionable advice on how to figure out what the marketplace means to you. From one of my…

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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…

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Mar 08 2013

Snowflakes and bitch-slaps at the ePharma Summit

By healthcare industry, technology

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…

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Feb 12 2013

Medical Monopoly: Medicine has a major image problem

By healthcare industry, media commentary, politics, technology

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…

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