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Healthcare

May 27 2019

Surprise medical bills = stress on blast

By cancer, e-patients, healthcare industry, healthcare price transparency

In case you missed it, getting a Really Big Diagnosis like, say, cancer, is a big whack to the wallet. Even if you have titanium-plated insurance (spoiler: there is no such animal in the US healthcare payment system), there will be bills for many, many things. If you have a deductible, be prepared to build a spreadsheet matrix with complex algebra to calculate how much of what care will be on you. If you have co-insurance – your spouse’s employer coverage, for instance – that’ll add complexity to your algebra. It’s a lot. In a piece on the Discover credit card and financial services blog, recent Cancer Club inductee Kris Blackmon lays out how unexpected medical expenses impact people dealing with a Really Big Diagnosis, or any ongoing health issue that requires lots of clinical care – and therefore medical bills – offering a solid strategy for dealing with those bills. Do your research Talk to your clinical team’s billing office in advance about what your options are under your coverage plan. You’ll have to do this with each provider and facility you’ll receive care in – Blackmon says she chose to be treated at a major academic medical center because of the one-stop care coordination available in a comprehensive care setting. Ask all the questions If you’ve been hanging around these parts for any length of time, you know I’m all about being your own best advocate when getting medical treatment. Kris Blackmon puts mustard on that ball by recommending that, even if you wind up in the emergency department (which can totally happen during cancer treatment), you ask to speak to the billing department rep in the ED before any treatment is ordered, or delivered, so you know what your options are, and what the bill might be for them. Read the…

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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 24 2018

Whither Cochrane, for e-patients and everyone else?

By healthcare industry

Image from Twitter user @Rasha_Fadlallah This will be the third, and last, in my short series on attending the Cochrane Colloquium in Edinburgh in September of this year. In the first post, I talked about what that conference was like; in the second, I shared an overview of Cochrane as a global movement to make medical evidence work better for clinicians, patients, and communities around the world. This last one will talk about some of the issues Cochrane is facing, as an organization and as a proponent of science in a world that seems to have a rising suspicion of science and research. I watched the Cochrane Colloquium open not just with a welcome to Edinburgh – although there was that, in spades – but with a behind-the-scenes PR flame war that wound up sucking up the the headline space for Cochrane that week, and in the weeks since. I talked about it in my podcast the following week, and have watched the conversation go by since my first day on the ground at the Edinburgh International Convention Center. The short-snort version of what happened is this: On September 14, the Friday before the Cochrane Colloquium was to kick off (on Sunday the 16th), a letter went up on the Cochrane Nordic Center site’s News page from Dr. Peter Gøtzsche, wherein he announced that he had been expelled from the Cochrane governing board by a slim majority vote by that board. He cast it as a moral crisis, caused by Cochrane’s too-chummy relationship with the pharmaceutical industry. That letter has since disappeared from the Cochrane Nordic pages, the link is to a PDF on the Mad In America site. Cochrane itself stayed silent for 24 hours, putting up its response to Gøtzsche’s letter late on Saturday, referencing only an independent review of “complaints related to…

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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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Apr 03 2017

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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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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