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health care

Selling my health data? CUT. ME. IN. BITCHES.

By healthcare industry, politics

Remember when American taxpayers spent over $25B(that’s billion) on digitizing medical records? If you don’t … well, we did. The last time you went to the doctor, how easy was it for you to see your aftercare instructions online, or follow up on your prescriptions, or get your lab results in the online patient portal? My guess is that it might have been easy-ish to see stuff in your doctor’s patient portal, but sharing that data from, say, your primary care MD with your ob/gyn or your rheumatologist — unless they were in the same system, in the same practice office — would have been a big NOPE. You would have done what all of us did back in the ’80s, and the ’90s, and the ’00s, and still today — you would have printed it out, or paid for a copy, and then lugged that paper with you to the other MD’s office. Where it would have been stuffed into a paper chart, and/or hand-entered into that practice’s EHR (Electronic Health Record). 20% — that’s one in five — MDs still use paper charts (as of 2016). OK, so now you’re as up to speed as you’ll need to be for the rest of my point here — American taxpayers have shelled out major moolah to digitize medical records. When it comes to those American taxpayers’ benefits from said digitization, that’s YMMV territory, that right there. Which makes the major moolah that the healthcare system is minting off of de-IDing and selling the data inside those records pretty infuriating. What, you say, you had no idea that was happening? Not surprising, because the healthcare system DOES. NOT. WANT. YOU. TO. KNOW., since if you did know, you might protest. Or even (gasp) ask to be cut in on that moolah. Have you ever heard of a company called QuintilesIMS [NYSE: Q]? If not, you’re not alone. IMS Health…

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Democratization of knowledge, healthcare edition

By e-patients, healthcare industry, technology

I was lucky enough to be asked to write the foreword to the 3rd edition of Shared Decision Making in Health Care: Achieving evidence-based patient choice, from Oxford University Press. Here’s the text of that forward. We are at what appears to be a Copernican moment in healthcare, where everything that learned minds thought was true – that the sun revolved around the earth; that miasmas rising from the ground, or humours contained within the human body, caused disease; that only magical beings called doctors could understand or participate in medical care – is being disproved. Medicine stands at a crossroads unlike any other transformation point in its history. As access to information – what I call the democratization of knowledge – has become as simple as the movement of a human finger, the relationship between doctors and the people they care for has undergone a seismic shift. But like many seismic shifts, it’s happening at a level that only those tuned to pick up the signals from it can sense. That I, a patient voice whose only medical knowledge has been acquired as an autodidact with strong research skills, have been asked to write the foreword to the third edition of Shared Decision Making in Health Care is a strong indication that the earth is moving beneath our feet. The knowledge exchange that is the bedrock of shared decision making is creating the mutuality that has been missing in medicine, making a full partnership between doctors and the people they care for finally possible. As is made clear in many parts of this book, building literacy on both sides of the equation is a must for shared decisions – information has to be shared with people in ways they can understand, which makes solid communication skills a must for both patients and…

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Make America Sick Again!

By healthcare industry, politics

The Insane Clown Car Posse (hat tip to my buddy Robb Fulks for that lovely turn of phrase) that’s currently at the helm of the ship of state here in the good old USA has started to give us a peek at their plans for US healthcare. The phrase “shit show” seems to have been invented just so it could be used to describe the excrescence that’s emerging, inch by fetid inch, under the banner of the AHCA, full title “American Health Care Act.” [Personally, I call it “the new National Eugenics Plan,” since the savings the legislation’s backers crow about are clearly gained from sick folks just dyin’ quicker.] Maybe we could tag it as GOTCHA, “Government Out To Cut Healthcare Access?” Asking for a friend. “Make America Sick Again!” seems to be the sales pitch here. After the gnashing of teeth, rending of garments, and fisticuffs that marked the passage of the Affordable Care Act in 2010, the ACA haters – we’ll call them “the entire Republican Party, and all who sail in it” – spent the rest of Obama’s Presidency voting to repeal the law, while doing very little else. What the ACA, or “Obamacare,” accomplished was to finally put the theory of universal healthcare access on the table for Americans, who had spent the 20th century watching pretty much every other developed nation on the planet create either single payer (a la Britain’s NHS) or insurance-based universal access (in Germany and Switzerland) healthcare delivery systems for their folks. I say “theory of universal access” because, like all Congressionally-ground sausage, it’s a mix of top cuts of awesome (10 Essential Benefits! Tax Subsidies on Premiums!) with awful offal from the abattoir floor (too much power concentrated in the hands of AHIP, ridiculously narrow networks, uneven Medicaid expansion)….

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Primary + People/Patients = Winning?

By healthcare industry, politics

I’ve been all over ever’where so far this year, invited to participate in a number of events that, taken together, seem to indicate there’s some progress being made on “healthcare system transformation,” even if it’s still happening at a glacial pace. One of these events was the Starfield Summit, put together by the Robert Graham Center, which is the policy think-tank arm of the American Academy of Family Physicians. I fielded an invite when the Graham Center reached out to the Lown Institute to ask if there was a patient-type human who might lend something to the conversation as an attendee. So I took the “let patients help” rallying cry to DC for a couple days of lock-in with a bunch of primary care docs and the wonks who love them. Which, by the way, includes me, which you know if you’ve been paying attention. Primary care docs are the ideal partners for people/patients who are working to shift the USS Medical Industrial Complex aircraft carrier – both primary care MDs and patients are low on the medical-industrial complex power pole, so if we team up, we might be able to boost each other up to start showing up on the power radar. If you’d like a good overview of the importance and impact of primary care on a health system, something that Ben Miller shared on the first day is a great précis. Money quote from the conclusion, IMO: Primary care is imperative for building a strong healthcare system that ensures positive health outcomes, effectiveness and efficiency, and health equity. It is the first contact in a healthcare system for individuals […]. It provides individual and family-focused and community-oriented care for preventing, curing or alleviating common illnesses and disabilities, and promoting health. What I heard, saw, and discussed over the two days tells me that…

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Help us, IBM-Dell-Apple. You’re our only hope.

By healthcare industry, media commentary, politics, technology

I’ve been on the road a lot over the last six months, getting the chance to interact with (and, I hope, influence), audiences in health tech and health policy. There’s so much desire for change, search for innovation, and just straight up “desperately seeking [something]” out there, it’s almost hilarious that no real change/shift/what-have-you has yet occurred in the giant $3-trillion/year-and-rising sucking sound that is the American healthcare system. Which is why I concluded, long ago, that the system would not be re-invented from within, particularly when it comes to the tech side of the party. Since the medical-industrial complex is keeping the fax machine manufacturers of the universe in business, it’s hard not to snort with laughter at tech “innovations” that emerge from inside the complex’s ivory towers. Tech innovation – on both the consumer and the system side – will come from companies with a proven history of delighting ground-level customers. The ones I like to call “people.” Here’s a Casey-ism that will be appearing in a new report on tech in healthcare from The Beryl Institute: “My sense about technology, and whether it’s engagement or system improvement or anything in this zone, I think that the change is going to come from outside the healthcare industry. The solutions are going to be delivered by companies or entities that have a history of putting technology in the hands of consumers (people) and having those consumers (people) say ‘awesome!’ and just start using it.” I don’t think anyone – consumer or clinician – has touched anything related to Electronic Health Records (EHR) tech and said anything resembling “awesome” about the experience. We, as a nation, have thrown $30+ billion at getting our healthcare delivery system into the 21st century, but have so far only seen it get to the point where it’s partying…

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Elephants, middlemen, and systems – oh, my!

By healthcare industry, politics, technology

I’ve been MIA here, but I’ve been loud/proud pretty much everywhere else in the last few months. Including here and here.  What follows is a rant based on what I’ve been seeing/doing since last seen on this page. Elephants There’s an old joke that goes like this: “What’s an elephant?” “It’s a mouse designed by a government committee.” There’s also the old “elephant in the room” bromide about topics that are not to be mentioned under any circumstances, despite their obvious impact on the issue under discussion. And the “How do you eat an elephant? One bite at a time.” motivational meme, along with the “blind guys describing an elephant” metaphor used to explain the impact of silo-ed thinking. We’re up to our parietal bones in pachyderms in the healthcare transformation discussion. The biggest one – you can call him Jumbo, or you could call him Dumbo – is always in the room. What I call him is Huckster Nation. What do I mean? I mean the underpinning of pretty much all of American culture – the carnival barker sales guy (guy in this usage is gender neutral). We are a nation of flacks, flogging everything from Sham-Wow to space stations, and that includes our healthcare system. Hell, I’m selling myself, or at least I’m offering to rent out the contents of my cranium in exchange for coin of the realm, as are we all, in one way or another. Americans have taken this to the level of a cultural art form, in that we’ve built our national myth around economic freedom. That it works out to be a literal myth for too many of us – income divide, I’m talking to you – is part of what I’m calling out here, but for the moment let’s focus on the carnival barkers sales guys in US healthcare, shall we? I’m taking about…

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UPDATE: Patients ARE smarter (and louder) … here’s proof

By e-patients, healthcare industry, media commentary, technology

It’s been a fun week here in Mighty Casey Media Land. We kicked off the week a little early (on Sunday) – the 411 on that is available here, and some of the social exhaust is available on Storify here and here. One member of the e-patient posse worried that the guy was gon’ have to enter witness protection, given the avalanche of opprobrium aimed his way from the expert-patient community. Thank god. I was worried this guy might need to go into the witness protection program. TY @MightyCasey – #FTW! https://t.co/xIayus5Gao — Hurt Blogger | Britt (@HurtBlogger) June 17, 2015 In an email thread among a group of expert patients working on aggregating and curating patient-useable outcomes reporting tools, Dr. Corrie Painter said she had called the Brookings Institution, the think tank where the author of the US News piece that set my hair on fire does his think-tank thing, and left a terse message on the Governance Studies main line about pontificating patriarchal putzes (technical term). Given my willingness to talk to anyone, any time, if it moves the needle on healthcare system transformation, I went one better and called the *other* number on the guy’s bio page. I expected to wind up leaving a voicemail, but … He. Answered. The. Phone. We talked for about 30 minutes, during which I assured him that I did *not* think that Yelp reviews were the ne plus ultra, or even a thing, when it came to outcome metrics on physicians and other clinical providers of medical services. But, as I pointed out in my “I’m channeling Lewis Black, with boobs, in healthcare here: righteous rage + cutting humor = driving that point home!” post, what real metrics are *available* to patients seeking intel on the expertise and outcomes of the doctors they go to for care? There are PQRS and Physician…

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From the Patients Are Smarter Than You Think Desk …

By e-patients, healthcare industry, media commentary, technology

See this UPDATE, too. Sundays are pretty quiet here in Mighty Casey Media Land. Yeah, there are those Sundays where I read my wall calendar without my glasses on, and totally think it’s Father’s Day when it’s really Flag Day … but that’s about as exciting as it gets most weeks. Today is one of the latter Sundays, where I not only cause a Father’s Day panic on Facebook (yeah, that’s a thing), but also get Twitter DMs that set my hair on fire. Which you know, if you’ve been hangin’ round this water cooler for a while, is never a good thing. This morning, I picked up my phone while I was waiting for my coffee to brew, and what ho – a DM from my friend HealthBlawg with a link to a “stupid patients, don’t Yelp doctors” piece on US News with the headline “Online Doctor Ratings Are Garbage.” The piece is by Niam Yaraghi, whose pieces on US News usually have me nodding along in full agreement … but not this time. In the “don’t Yelp, bitch” piece, Yaraghi essentially tells people they’re too stupid to understand medical care’s value and outcomes, that we should just lie back and think of England and let those nice doctors do their work. Let’s take ’em in order, shall we? Patients are neither qualified nor capable of evaluating the quality of the medical services that they receive. Seriously?? Does Yaraghi know any cancer patients, or people with MS, or ALS, or rheumatoid disease, or diabetes? I’m pretty sure the answer there is “no,” that he knows a whole bunch of polysyllabic “experts” due to his work at Brookings, but very few ASPs (Actual Sick People). The patient community is teaching the clinical community constantly about both medical research and business operations. I’ll say it again: input from the patient community is, daily,…

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World on fire. Film at 11.

By healthcare industry, media commentary, politics, technology

I wasn’t lucky enough to get a press pass, or a scholarship, to HIMSS15 this year. Given events of the last few days, I’m really sorry I can’t be on the ground in Chicago for what feels like a grassroots revolt brewing in protest of the Centers for Medicare and Medicaid Services (CMS) dropping an announcement, on Friday late afternoon, that they were thinking of gutting the rules for patient access to their own records under the “Meaningful Use” criteria of healthcare reform. You know, the one where we spent something like $6B of taxpayer money. Which was supposed to make care easier, safer, cheaper. There are phases and stages of Meaningful Use. We’re in MU2 right now. Originally, by the end of the MU2 period (running through 2020), a practice or facility had to demonstrate that 5% of the people/patients cared for in that practice or facility viewed, downloaded, or transmitted their personal health information (PHI) to a 3rd party. That was the criteria for a healthcare provider seeking stimulus $$ for EHR technology deployment [updating: and Medicare reimbursement]. Here’s the “new” rule (clue train: instead of 5%, it’s 1. No, not 1%, one patient) being proposed: I know, right? Friday afternoon, everyone in the industry is heading to Chicago for HIMSS15, who’ll care? Sorry, CMS, but you are totally busted. Here’s data access rights activist Regina Holliday, who’s at HIMSS and whose hair is now on fire. Speaking of “hair on fire” … so’s mine. Seems like the Empire is trying to strike back. Or the Capitol (the big-money healthcare industry players who drop money on K Street lobbyists like snowflakes in Boston in the winter of 2014) thinks it’s run over all the Districts (patients, caregivers, families) and has little to fear from our powerlessness. I think they’re wrong. Dead…

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Report from the front lines: Technology, engagement, and killing paternalism

By healthcare industry, politics, technology

I’ve spent a good portion of the last two months on the healthcare equivalent of the political stump – called the “rubber chicken circuit” in political circles. Thankfully, there was no actual rubber chicken served during these sojourns, although there was the incident of the seductive breakfast sausage, followed by my solo re-enactment (off stage) of the bridal salon scenes from the movie “Bridesmaids.” I will draw the veil of charity (and gratitude for travel expense coverage) over the details of that incident, and just advise all of you to stick to fruit, cereal, or bagels at conference breakfasts. ‘Nuff said. My original editorial calendar plan was to turn this into a series of posts, broken down by focus into technology and clinical categories. However, since a big part of my goal in standing on the barricades at the gates of the healthcare castle, waving my digital pikestaff in service of system transformation, is breaking down silos … well, go grab a sandwich, and a beverage. This is gon’ be a long one. HIMSS Patient Engagement Summit In early February, I headed to Orlando for the first Health Information and Management Systems Society (HIMSS) Patient Engagement Summit. I was asked to participate in two panel discussions, one titled “Patient Perspectives: The State of Engagement,” the other “Can We Talk? The Evolving Physician-Patient Relationship.” Both were moderated by Dr. Patricia Salber, the bright mind behind The Doctor Weighs In. Being a person with no letters after her name (like Elizabeth Holmes [update: she’s trash, so redacted] and Steve Jobs, I’m a college dropout), I’m used to showing up at healthcare industry events and being seen as something of a unicorn fairy princess. That’s how people commonly called “patients” are usually viewed in industry settings outside the actual point of care. Healthcare professionals/executives are so used to seeing us as revenue units,…

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