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politics

Oct 30 2019

Tear gas, neoliberalism, and #PatientsIncluded — will it blend?

By healthcare industry, media commentary, politics

The Tear Gas I traveled to Santiago, Chile recently. My timing was auspicious, since my news-puke bingo card still had an open slot preventing me from screaming BINGO at the top of my lungs. That open square was “get tear gassed” — it got filled at around 11am Atlantic Time on Monday, October 21, as tear gas rolled down Avenida Libertador General Bernardo O’Higgins, called La Alameda by locals. It’s really hard to scream BINGO at the top of your lungs while getting tear gassed, by the way. In case you wondered. I was in Chile to attend and speak at the annual Cochrane Colloquium, a global meeting for health researchers, science geeks, and health policy nerds from all over ever’where, to share the experience of being part of the first #PatientsIncluded Cochrane Colloquium in Edinburgh last year. The conference was scheduled to start on Tuesday, October 22. On Thursday, October 17, Chilean citizens — who have had to put up with A LOT over the last sixty or so years — got fed up with ever increasing costs of living and took to the streets to protest a subway fare hike, led by high school students who jumped turnstiles to evade paying the new fare. EVADE become the mantra of the protest, which kept growing over the next couple of days, with some seriously crunchy stuff happening — a Walmart in Valparaiso got burned down, and a Santiago office tower occupied by an energy company burned, too. All of this was ramping up as I traveled from the US to Chile on Saturday into Sunday, October 19 and October 20, so when I got to Santiago on Sunday morning, there was already a curfew on tap, and a whole lot of military dudes in camo and battle gear wandering…

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Jan 02 2019

Pay people for their data – yes, or no?

By healthcare industry, media commentary, politics, technology

I was recently part of a trinity of folks debating the idea of paying people for the data they contribute to the digital economy, in healthcare and in all other sectors. Here’s the full version of the conversation on YouTube, with yours truly taking the “yes” side, Brookings Institution non-resident fellow and UConn professor Niam Yaraghi taking the “no” side, and Jan Oldenburg moderating the debate. It’s an hour long, so pack a lunch! I put together a shortened audio version of the discussion for my Healthcare Is HILARIOUS! podcast, and that’s here. You’re invited to weigh in – share your comments here, or on Twitter or Facebook. On Twitter and Facebook, use the hashtag #fypmdata – **** You Pay Me (for my) Data. There’s a transcript of the entire discussion here: Transcript (in Google Docs) Links related to issues raised during the debate: Dr. Latanya Sweeney, data scientist and data privacy thought leader extraordinaire Data Commons Cooperative Citizen (health data coop) Humantiv (health data coop) #My31/Hu-manity (health data coop) PBS Frontline “The Facebook Dilemma” series (enraging + frightening) “Selling My Health Data? CUT. ME. IN. BITCHES.” – Casey Quinlan’s manifesto on health data brokering UPDATE added Saturday, Nov. 17, to reflect possibility that the universe is reading either my mind, or my Twitter feed (possibly both): Startup Offers To Sequence Your Genome Free Of Charge, Then Let You Profit From It – NPR Some stories revealing the creep factor in digital health data capture and sale: Google gobbling DeepMind’s health app might be the trust shock we need – TechCrunch The quest for identified data: Why some firms are bypassing hospitals to buy data directly from patients – Fierce Healthcare Period-tracking apps are not for women – Vox Intellectual property’s vital role in healthcare’s AI-driven future – Pharmaphorum Startups Plan the Health Data Gold Rush – The Scientist This post originally appeared on the Society for Participatory Medicine blog in November, 2018.

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Oct 30 2017

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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Mar 16 2017

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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Jun 20 2016

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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Apr 12 2016

An open letter to Pres. Bill Clinton

By cancer, e-patients, healthcare industry, politics

Dear Bill, I think I can call you Bill, since we’ve known each other since early 1989, the first time I actually met you, at the Democratic Governor’s Conference at the Franklin Institute in Philadelphia. Oh, you don’t remember me? No surprise, I was buried in the front row of the press gaggle, helping cover the meeting for the Today Show. I continued to cover you – on the campaign trail in ’92, at Madison Square Garden when you were nominated, and throughout your 8 years in office, including l’affaire Lewinsky – for years. So we’re blood, brother. This morning, I read a piece in MedCityNews about your $630K in speaking fees for two appearances, in 2013 and 2014, at the World Patient Safety, Science and Technology Summit in Dana Point, California. My head exploded. You see, I have myself been working for years on transforming the healthcare sector into something that serves humanity, not corporate bottom lines or C-suite ivory tower dwellers. I’ve been doing this based on my direct experience, as a family advocate and caregiver for two members of the Greatest Generation, and then as my own advocate through cancer treatment. I know how screwed up the US healthcare system is. I also, thanks to the fact that I’ve been (a) loud and (b) indefatigable, know that the global healthcare system ain’t exactly all beer and skittles, either, but the US system is particularly remarkable in its ability to strip off $3-trillion-with-a-T in revenue every year, in exchange for serving up 11th place in the global Top 10 of healthcare system quality. As I mentioned, my head exploded at the $630K speaking fees you received for keynoting at the World Summit over two years. You see, I get invited to all sorts of national healthcare system transformation shindigs, often to appear on the platform myself, usually…

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Mar 16 2016

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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Nov 06 2015

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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Apr 21 2015

Security vs. access: threading the needle

By healthcare industry, media commentary, politics, technology

The annual big-data party known as the HIMSS conference played out in Chicago – and online – last week. During the event, one of the central issues that arose in the social media conversation under the #HIMSS15 tag involved the one facing patients trying to access their health records, either digitally or on old-school paper: the security/access conundrum. Data that’s accessible to a patient could also wind up accessible to Romanian hackers (you’ve heard me on this topic before), and efforts at making patient data “secure” mean that data is often secure from the patient whose data it is. Patients give their forehead some serious keyboard every day over that one. The folks over at Software Advice released a report on HIPAA breaches on March 12*, which I only caught up with when I returned from my Mighty Mouth 2015 Tour of Info-Sec and Right Care. Full disclosure, I’m quoted in the report, but that’s not why I’m talking about it here. Here’s my biggest takeaway from the piece: 54% of the patients surveyed for the report would consider ditching a healthcare provider if that provider had a breach. Most Patients Would Switch Providers After Breach   Key findings in the report: Forty-five percent of patients are “moderately” or “very concerned” about a security breach involving their personal health information. Nearly one-quarter of patients (21 percent) withhold personal health information from their doctors due to data security concerns. Only 8 percent of patients “always” read doctors’ privacy and security policies before signing them, and just 10 percent are “very confident” they understand them. A majority of patients (54 percent) are “moderately” or “very likely” to change doctors as a result of a patient data breach. Patients are most likely to change doctors if their medical staff caused a data security breach, and least likely to change doctors if hackers were…

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Apr 13 2015

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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