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Politics

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

October 30, 2019 by Mighty Casey Leave a Comment

meme image saying "tear gas, neoliberalism, and #PatientsIncluded - will it blend?"

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.

photo of supermarket security door with EVADE graffiti
image credit: mighty casey media llc

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 around the streets toting assault rifles.

I checked into my hotel downtown, and spent a little time looking around the neighborhood. Everything — restaurants, cafes, stores — was closed, except for a few mini-marts around the corner, which had folks lined up to buy groceries at each one. I joined one of the lines, and bought some stuff for dinner in my hotel room.

Meanwhile, my email inbox was stacking up with traffic about the coming Cochrane conference, and whether or not it was actually going to happen, given the rising tide of rage in the streets across the country. On Sunday mid-day, Cochrane decided to cancel the event, “[d]ue to the worsening situation of civil unrest across the city of Santiago.”

Which brings me to Monday, and my news-puke BINGO! moment. In a fruitless search for an ATM or casa de cambio (currency exchange) downtown, I wandered a widening circle around my hotel, winding up on La Alameda around the time that protests were set to kick off around 11am, and getting my snoutful of tear gas. I had dressed for cool-morning-then-warming weather, so I had a shirt that I’d taken off as the temperature rose on my pasear — I wrapped that around my face, and moved away from the rolling miasma of 2- chlorobenzaldene malononitrile (CS), aka tear gas.

As a former news-puke type human who has also studied history, along with living some of it directly, getting tear gassed in Chile was … kinda perfect. I grew up in a military family — US Navy, to be precise — with a dad who was not just a Top Gun (fo’ realsies) fighter pilot, but also an historian and political economist. I spent my childhood through young adulthood surrounded by history books, foreign policy journals, military briefs (declassified, of course), and at least three metropolitan dailies delivered to our door. And that was just dad — mom was Science Girl, so there was also scientific reading of all sorts available throughout the house. So of course I wound up in the news business.

My dad was always happy to talk to me about global events, and emerging history — also called “the news.” The only rule was whatever was discussed in the house, stayed in the house. His military gig, and rank, meant he had all sorts of information and knowledge. That my coming of age happened in the late 1960s through the 1970s means that he and I had all kinds of deep, crunchy conversations about everything from the Vietnam War (dad was not a fan) to Watergate (he was not a Nixon fan) to economic issues like the oil crunch (did I mention that political economy thing? He wound up with a Masters from University College, Dublin).

I learned a lot, including how to apply critical thinking, from dad. And the Jesuits — I grew up in a Catholic family, so Jesuits were always a risk — got in there, too, since they’re considered the intelligentsia of <snark font> Holy Mother Church Universal and Triumphant </snark font>, and I attended a Jesuit university.

So that’s the tear gas part — and a whole lot of backstory.


The neoliberalism

Neoliberalism is an ideology and policy model that emphasizes the value of free market competition. It first appeared as a word/concept around the turn of the 20th century, when all sorts of intellectual fist fights were going on over “communism or nah?” and “capitalism or nah?” I’m not going to go into a whole history of classical liberalism — short snort definition is “political philosophy and ideology in which primary emphasis is placed on securing the freedom of the individual by limiting the power of the government.”

Confused yet? I swear I’ll stop with the definitions now.

Neoliberalism became the very favorite thing of Milton Friedman, a University of Chicago economics guy who became the father (figuratively) of the Chicago Boys, a group of Chilean economists who wound up influencing Chilean monetary and economic policy under the Pinochet dictatorship, which was in power 1973–1990. Pinochet was a charming little despot, who led a military coup to overthrow the elected president of Chile, Salvador Allende, with the support of the Nixon Administration.

Chile became a proving ground, a laboratory, for neoliberalism as an economic and political theory put into practice. If that whole “free market competition” thing in the definition makes you think of Ronnie Reagan and Maggie Thatcher, you’re not hallucinating. They were neoliberals, dedicated to proving that free markets solve everything. Got a societal or economic problem? Free markets will solve it! Lower taxes, stop making so many rules (aka “regulations” or “laws”), just let a free market fix everything!

Which is great if you already have a little money, or even a job that pays a living wage. If you don’t have either of those — sorry, loser! “Free market” for you will mean you’ll be free to pay the market price for, or just do without. Neoliberalism is all about freeing up capital by lowering taxes on people with high incomes, or with big investment portfolios. If you’ve noticed that many countries, including the US, have been dealing with rising income and economic inequity, you can lay that at the door of neoliberal economic practice.

So the folks in Chile who are burning down Walmart and setting fire to energy company office towers have a point. They’re mad as hell, and they’re not going to take this <neoliberal bullshit> any more.

photo of woman holding cardboard sign saying "neoliberalism was born in Chile and will die in Chile"
image credit: @UptownBerber on Twitter

As an official old, I’ve been around to see the impact of neoliberalism on global politics and global development. “Free market” thinking has mostly wound up putting what both capitalism and communism call “the means of production” — the stuff that makes the stuff that gets sold in/on the markets — in the hands of an ever-shrinking number of people and organizations. Neoliberalism, as a 20th century political philosophy, was brought into being by folks like the all-American Koch family who, after working with Stalin and Hitler in the early days of both Stalinist USSR and Nazi Germany, put their finely tuned libertarian-now-called-neoliberal political POV to work in the US.

They promoted anti-communism by buddying up with the John Birch Society, and started a “Freedom School” in Colorado Springs to promote their Ayn-Randian/rugged individualism/every man (and it’s really always men) for himself philosophy. They birthed the American hard right. If you want the whole story in almost excruciating, but very well written, detail, read “Dark Money: The Hidden History of the Billionaires Behind the Rise of the Radical Right” by Jane Mayer. Buy a bottle of bourbon to drink while you read it — you’ll thank me for suggesting that.

Back to Chile and neoliberalism. The “Chile miracle” — where Chile sported the most vibrant economy in South America — was seeded by democracy under Allende, not by Pinochet, although Pinochet kept getting the credit. Here’s a good explainer on that by Heraldo Muñoz, “Is Augusto Pinochet responsible for Chile’s success?” [spoiler: nope]

So that’s A WHOLE LOT — a mile wide and about a millimeter deep — about neoliberalism.


HTF does #PatientsIncluded come in here?

I’m SO glad you asked!

One of the reasons the folks in Chile are in the streets is that the government is trying to fully privatize the Chilean healthcare system. As an American, I can testify to what a totally shitty idea that is.

Rather than just me banging on about this, here’s the summary points from an article on PLOS Medicine, “Chile’s Neoliberal Health Reform: An Assessment and a Critique” (published in 2008):

  • The Chilean health system underwent a drastic neoliberal reform in the 1980s, with the creation of a dual system: public and private health insurance and public and private provision of health services.
  • This reform served as a model for later World Bank–inspired reforms in countries like Colombia.
  • The private part of the Chilean health system, including private insurers and private providers, is highly inefficient and has decreased solidarity between rich and poor, sick and healthy, and young and old.
  • In spite of serious underfinancing during the Pinochet years, the public health component remains the backbone of the system and is responsible for the good health status of the Chilean population.
  • The Chilean health reform has lessons for other countries in Latin America and elsewhere: privatisation of health insurance services may not have the expected results according to neoliberal doctrine. On the contrary, it may increase unfairness in financing and inequitable access to quality care. [emphasis mine]

That I traveled to Chile to speak about #PatientsIncluded at a global health research and policy conference, as the citizens of that country said AH HELL NAH to being the policy version of a bunch of lab rats in the neoliberalism experiment, is some delicious irony. And why I actually kind of enjoyed being tear gassed on La Alameda — as an American, I know my own country is on the wrong side of “you break it, you bought it” in Chile. We broke this. So we own it. I learned that from my dad, in our long discussions of world politics over decades.

One of the chants I heard on the streets in Santiago was “no son unos 30 pesos, son unos 30 años” — “it’s not about 30 pesos, it’s about 30 years.” The ghost of Augusto Pinochet, who was finally deposed in 1990 after 17 years of torturing, disappearing, and murdering his own citizens, still haunts, perhaps even rules, in Chile in 2019. March 11, 2020 is the 30 year mark since Pinochet got drop kicked from office. Chileans are still recovering from Pinochet Syndrome, along with the rest of the world that got jiggy with neoliberalism, thinking that unrestrained free markets would be just awesome.

Participatory medicine is a core principle in #PatientsIncluded. Participatory democracy — individual participation by citizens in political decisions and policies that affect their lives, often directly rather than through elected representatives — is #CitizensIncluded. Simply putting “the grownups” — doctors, in the case of medicine; elected officials, in the case of democratic government — 100% in charge is a bad idea, since patriarchal or dictatorial bullshit can ensue.

Putting any other “grownups” — folks with lotsa money and/or power, in either medicine or civil government — in charge delivers plutocracy.

We all need to be grownups. Which is why #PatientsIncluded came into being in medicine — let patients help build systems, and policies, that work for everyone — and why participatory democracy, which sometimes comes in the form of people taking to the streets to say …

… is a hallmark of people standing up for their rights as human beings, and as citizens.


So … tear gas, neoliberalism, and #PatientsIncluded — will it blend?

It will, because all humans deserve to be provided with the basics of a dignified life, which include shelter, water, food, education, meaningful work for which they are paid a fair wage, and a voice in the circumstances of their lives, the lives of their families, and of their community.

They’ll face tear gas to tear down neoliberal bullshit, and the inequity it breeds, and demand to be included in building a world where human dignity and human rights are the prime directive.

photo of books, posters, and flyers from Archive of the Graphic Resistance, Santiago Chile
image credit: mighty casey media llc
books and posters in the collection of the Archive of the Graphic Resistance, Santiago Chile

A Twitter thread as lagniappe …

meme image saying "tear gas, neoliberalism, and #PatientsIncluded - will it blend?"
image credit: casey’s brain

This piece originally appeared on my Medium page.

Filed Under: Find the funny, Healthcare, Media commentary, Politics, Social media, Storytelling Tagged With: #patientsincluded, chile, cochrane, cochrane colloquium, human rights, neoliberalism, politics

Pay people for their data – yes, or no?

January 2, 2019 by Mighty Casey Leave a Comment

funnels representing digital data with money symbols
image credit: CIO Magazine

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

Ciitizen (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.

Filed Under: Business, Healthcare, Media commentary, Politics, Social media, Technology Tagged With: #fypmdata, civil rights, data, data economics, data economy, Healthcare

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

October 30, 2017 by Mighty Casey Leave a Comment

keep calm and sell your data image

keep calm and sell your data imageRemember 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 was founded in the 1950s, and built a market for prescription data collected by their field agents in pharmacies across the US, and then the world. Quintiles was founded in the 1980s as a CRO (Contract Research Organization) recruiting for pharmaceutical clinical trials. IMS merged with Quintiles last year (2016), yielding up the new QuintilesIMS.

The company hoovers up petabytes-worth of our health record data every year — not a HIPAA violation, since this data is “de-identified” (just go Google “Latanya Sweeney” for some 411 on how effective that whole de-ID-ing thing really is) — and then sells it to the highest bidder. The revenue from those sales amounts to a significant chunk of the company’s earnings (2016 total revenue $1.953B — major moolah, indeed).

That’s

  • our health data
  • created by our interaction with our healthcare team
  • paid for by us, and our healthcare coverage.

American healthcare cost $3.4 trillion-with-a-T in 2016. American taxpayers ponied up more than $25 billion-with-a-B to make it easier for data brokers like QuintilesIMS to suck up and sell the data in our medical records.

I think it’s long past time for all the players in this little major-moolah circle jerk to recognize just “whose data is it anyway” and start spreading the gelt. Amazon cards; points amassed for vacations or cars or furniture, o my; tuition credits; tax breaks; a partridge in a pear tree, dipped in platinum — any of those would work. Even cold, hard cash.

But first, we gotta rise up, and demand it, in chorus. There’s a rising level of noise about creating a new economy, for/by the people, based on the data created by we-the-people.

The conventional commercial doctrine is that data are proprietary to the companies that collect them. This needs to change profoundly and completely since the playing field can only be leveled by making data available to all potential competitors. One way of achieving this is to ensure data belong to the people who generate the information, i.e., to individuals who drive cars, surf the internet, and buy goods. Enforcing this principle will ensure that data can be accessed by all, but also that individuals are compensated for the activities that generate information, at the same time as receiving a strong degree of privacy protection. ~ Foreign Policy, “It’s Time to Found a New Republic” August 14, 2017

Let’s make it happen. Start the chorus. Three … two … one … SING!

I’d say we start singing in the direction of the FCC, the FTC, and our (totally not doing their jobs these days) Congressional “representatives.” And start singing out about data-brokers like QuintilesIMS.

We MUST pay attention to the man behind the curtain. ’Cause he’s holding on to ALL of the money!

This post originally appeared on my Medium channel. 

Filed Under: Find the funny, Healthcare, Politics, Storytelling Tagged With: big data, casey quinlan, data economics, e-patients, health care, health economics, Healthcare, mighty casey media

Make America Sick Again!

March 16, 2017 by Mighty Casey Leave a Comment

boudica image

clown trump image
(c) Salon

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). But it was a start, after every President since FDR trying, and failing, to get any kind of national healthcare access plan in place.

After trying to throw Obamacare from the train, on a loop, lather/rinse/repeat, for years, once Cheeto Voldemort (I refuse to say, or type, his name – work with me here, people) took up occupancy at 1600 Pennsylvania Ave., the ACA-haters wasted no time in getting their “repeal and replace” dance of the seven veils started. They need at least seven veils to hide this mess, but they’re starting to run out of cloth.

Here are the Greatest Hits (to humanity, and human life) brought to us so far by GOTCHA-care:

  • Instead of getting direct tax subsidies to help pay health insurance premiums – currently, individuals earning less than $47,520, or families of four earning less than $97,200, are eligible for those subsidies – people who need to buy health coverage for themselves and their families will get a following-year tax credit for their coverage. Which sounds great, until you realize that, say, you’re a 58 year old human living in central Virginia who’s a freelancer, making $40,000 per year. You’ll have to shell out around $600 per month (annual total = $7,200) for your individual Silver plan, or $1,000 per month ($12,000 annually) for your family of four’s Silver plan, and then get a munificent … $3,000 per year. The tax subsidies under the ACA, for the same coverages: $3,200 for the individual plan, $10,000 for the family of four.
  • The myth of “choice.” All the messaging coming out of the push for the American Health Care Act is about “giving Americans choices about their care.” What those choices reveal themselves to be are:
    • “Go naked” – no individual mandate to buy insurance coverage. Combined with the hockey stick trajectory of health insurance premiums over the last 30 years, this is an actual “choice” that many people, including me, were forced into before the Affordable Care Act.
    • “Buy a plan you can afford.” – this is code for “buy a craptastic plan that covers nothing.” I know people who had plans like this before the ACA. The ones who got sick after buying these plans are no longer alive if they didn’t survive long enough to get on an ACA plan.
    • “Buy a plan that covers you pretty well, and then live in your car.” With a maximum tax credit of $4,000, for people over 60 years old, those who qualify for AARP membership will find themselves pretty broke-ass if they buy a plan with any kind of comprehensive coverage. Which is why the AARP is flaming Congress over this proposed “replacement.”
  • After improving access to healthcare (before the ACA, 18% of Americans – 47 million people – were uninsured; that number as of January 1, 2017 was down to 11%, 36 million), and starting to see incremental signs of overall public health improvement, the Clown Car now seems to think that throwing 24 million people off the insurance rolls by 2026 is a great idea, while bloviating about a $337 billion deficit reduction. Which sounds great, until you realize that the US spends upwards of $3.35 trillion-with-a-T on healthcare annually, of which up to $1 trillion is estimated to be waste. That’s $1 trillion PER YEAR, making the overspend between now and 2026 close to $10 trillion dollars. That figure makes a $337 billion deficit reduction over ten years look like a bar tab.

The people who put Cheeto Voldemort in office are the biggest losers here, which just proves that low information voters can wind up the punchline in a joke they *thought* they were in on. Our 45th President’s broad promises to “cover everybody” at “lower cost” is laughable in the face of the numbers out of the CBO, and the language in the AHCA itself.

As I said at the outset, this is a shit show. People’s lives are on the line, but the jerktastic folks defending this mess are outright lying about its impact on working class and middle class Americans. My own Congressional (un)representative, Dave Brat, answered my question about rural hospitals and uncompensated care at his Town Hall in February 2017 by pointing at the community clinics that hospitals are setting up to help people who can’t access care … THESE ARE PROGRAMS MADE POSSIBLE, AND PAID FOR, BY THE AFFORDABLE CARE ACT.

Sorry, was I shouting? <deep breath>

Tom Price, the “healthcare is a privilege, not a right” orthopedic sawbones now at the top of the US Dept. of Health and Human Services, outright lied on “Meet the Press” on Sunday, March 12, when he said “nobody will be worse off financially” under the American Health Care Act.

He prevaricated again, at a CNN Town Hall on Wednesday, March 15, when colon cancer survivor Brian Kline asked him point blank, “Why do you want to take away my Medicaid expansion?” Price said, “The fact of the matter is we don’t. We don’t want to take care away from anybody. What we want to make certain, though, is that every single American has access to the kind of coverage and care that they want for themselves.”

Price is fronting that myth of “choice” I mentioned above. They’re lying, they’re ginning up one of the biggest tax bonanzas for the already-wealthy in modern history, while simultaneously reducing access to care for the average American Joe and Jane.

Oh, and if you’re reading this, and thinking, “HAH! You losers, I have coverage through work!” … don’t. Employer sponsored insurance – which I have been saying needs to get clubbed on the head and buried in the woods for a while now – is on the bubble, too, since the Republican plan eliminates a key penalty on employers who don’t offer their employees health coverage.

The American Cancer Society hates this thing. The American College of Physicians hates this thing. Consumers Union *really* hates this thing.

We’ve got to get the insane clowns out of their car before they grind us under that car’s wheels. Time to start taking up some figurative weapons, folks. If the pen – or the keyboard – is mightier than the sword, start swinging that QWERTY blade at your Congressional representatives, now.

Your life is on the line.

Really.

boudica image
image credit: David Paget | Happy_Mutt

Filed Under: Crisis communications, Healthcare, Politics, Social media Tagged With: health care, health insurance, Healthcare, healthcare economics, healthcare reform, healthcare system, Obamacare, politics

Primary + People/Patients = Winning?

June 20, 2016 by Mighty Casey Leave a Comment

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 a power amplification is not fully “there” yet, but it’s building. My ticket to the party is one indicator, the other is that I made it clear during my time there that I brought a penetrating view of the system as it is, the system as it could be, and how we might work together – primary care clinicians and people/patients – to turn our aircraft carrier away from grounding on the rocks of “sucks up 47 times its weight in GDP” economic disaster. Oh, and not kill folks in the process, since that’s also a good goal, right? Quality, lower cost, satisfied patients, satisfied *providers* – the quadruple aim that AAFP itself codified a few years ago.

The format of the event was refreshing – there was the usual “sit in a big room, listen to wonks, watch slide decks” stuff, but that was broken up over the two days by what I’ll call “working group breakouts” where we assembled in small groups, in separate rooms, to wrestle the Big Ideas under discussion, which were:

20160424_084730

Just a small topic, since it’s the core of everything, right? Primary care IS healthcare, but primary care clinicians are paid much lower reimbursement rates than, say, cardiac surgeons (thanks to the RUC, who make sure the *specialty* MDs get the big bucks re reimbursement), primary MDs/NPs/RNs have low-on-the-pole status when it comes to $$. And $$ = power in most cultures, including ours. My key takeaways from that segment of the session, which tackled

  1. Payment, measurement, and the primary care paradox
  2. What does effective primary care look like?
  3. Disruptive innovations in primary care payment
  4. Primary care payment, social determinants, and community risk

can be summed up in one statement from my breakouts, “we have internalized the oppressor.” This tweet also sums up the discussion pretty well.

The center of #healthcare should be the patient in their community, not the doctor, the health center or the hospital#StarfieldSummit

— Marguerite Duane (@mduanemd) April 24, 2016

Lunch featured a keynote by Shannon Brownlee of the Lown Institute. Ben Miller captured the essence here:

"We do not have a research agenda in this country that is driven by the patients" @ShannonBrownlee #starfieldsummit #healthcare

— Ben Miller (@miller7) April 24, 2016

Next on the Big Ideas discussion list was the metrics of primary care. Specifically:

  1. Measuring primary care: lessons from the UK quality outcomes framework
  2. Payment reform, performance measurement, and delivery system transformation
  3. Measuring the three Cs: comprehensiveness, continuity, and coordination
  4. Payment and measurement innovations in the primary care of children

My takeaways from the 3+ hours we spent wrestling those ideas and input can be summed up with:

  • Embracing the concept of a Learning Health System is the only way forward (next time, they must invite Josh Rubin to the party!)
  • Without the community fully embedded in the creation and governance of a healthcare system, you’re measuring the wrong stuff
  • Adding health literacy – “how my body works” and “how doctors/nurses/care workers can help me” – to K-12 education HAS. TO. HAPPEN.
  • We have to stop admiring the problem and start actually CHANGING the system

Core issue? This:

#starfieldsummit #rightcare #s4pm #healthcarematters pic.twitter.com/tJeA1vOKUv

— Mighty #WearAMask Casey ☀️ (@MightyCasey) April 24, 2016

Day 2 kicked off with an examination of how primary care teams can impact the success or failure of a system of care. The pieces of that puzzle:

  1. Innovations in primary care teams
  2. Linking primary care, public health, and the community
  3. Integrated teams (primary care + mental health)
  4. Training a diverse primary care team

My time on the board of Virginia Supportive Housing (2004 – 2010) gave me a close-up view of the power of the “housing first” model in health/mental health care in an underserved population, and the exponential impact that addressing the social determinants of health has on the actual health of an individual, and therefore that person’s community at large. Help someone get off the street – “housing first” – and provide them with wraparound services, including basic healthcare, and magic happens. Yeah, it’s complicated, but as Winston Liaw said in his welcome on Day 2:

We need efficiency in #healthcare – this can come through work in teams #starfieldsummit pic.twitter.com/45kCIdyGJi

— Ben Miller (@miller7) April 25, 2016

My takeaway from that morning round of robust discussion lined up as:

  • Effective teaming will take agitation from the lower depths (citizens, community health workers) to shake up status quo
  • A shared leadership model has to emerge, one that includes PEOPLE (the ones called “patients) in system leader positions
  • “It takes time” can’t supersede the desperate need for rapid-cycle change in the healthcare system (stop admiring the problem!)
  • Until healthcare includes mental health, full-stop, we’ll be stuck in cycling #fail

The afternoon sessions tackled:

  1. Building primary care teams
  2. Advancing teamwork between the medical home and the medical neighborhood
  3. Shifting culture of primary care teams
  4. Statewide innovations in primary care payment

My favorite quick-hit presentation from that set was Andrew Morris-Singer from Primary Care Progress, who said, among many other things, that

Hilarious. @AMorrisSinger says his parents reacted to his coming out same way as his primary care choice: "No! Why?" #starfieldsummit

— Mighty #WearAMask Casey ☀️ (@MightyCasey) April 25, 2016

On the topic of building primary care teams, he said this:

Primary care teams need both structure and culture to succeed #MakeHealthPrimary @AMorrisSinger #starfieldsummit pic.twitter.com/lrFor2aMUP

— Glen Stream (@grstream) April 25, 2016

That one in the lower right – “trust” – is bedrock. Without trust, none of this will happen, and trust only happens when you have face-time to build a relationship. That’s true inside the medical team, and double-true when you’re talking care team/community relationship building.

Filed Under: Find the funny, Healthcare, Politics, Social media, Storytelling Tagged With: #starfieldsummit, AAFP, e-patients, health care, health care reform, Healthcare, healthcare policy, mighty casey media, participatory medicine, politics, primary care, robert graham center, Social media, Storytelling

An open letter to Pres. Bill Clinton

April 12, 2016 by Mighty Casey 11 Comments

an open letter to bill clinton graphic

an open letter to bill clinton graphicDear 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 as part of a panel. My voice apparently has some sort of value, since the invitations keep rolling in for me to share my perspectives on how to fix our fractured, unsafe, crazy-train healthcare delivery system.

However, I’m not paid in high-dollar speaking fees. I’m usually paid in warm handshakes, cold bagels, and occasional airfare. In other words, I’m working as what amounts to slave labor a volunteer in service of transforming a system that, as I mentioned, manages to suck up $3T/year (20+% of US GDP), and still manages to kill somewhere between 200,000 and 400,000 people a year through preventable error.

So here’s my pitch. I invite you to contribute $630,000.00, in whatever split you choose, to the Society for Participatory Medicine and the Lown Institute’s RightCare Alliance.

The Society for Participatory Medicine is dedicated to “a model of cooperative health care that seeks to achieve active involvement by patients, professionals, caregivers, and others across the continuum of care on all issues related to an individual’s health. Participatory medicine is an ethical approach to care that also holds promise to improve outcomes, reduce medical errors, increase patient satisfaction and improve the cost of care.”

The Lown Institute is a collection of researchers, doctors, nurses, policy experts, and just plain people-patients (sensing a theme here?) that “seeks to catalyze a grassroots movement for transforming healthcare systems and improving the health of communities.” Their RightCare Alliance “is the first grassroots social movement that brings together health professionals, religious and community groups, and the public. Together we are working toward a society in which the right care is accessible by all. We believe this will be made possible through a collaborative process that engages local healthcare institutions and the community in the stewardship of resources for health.”

C’mon, Bill. It’s not like you can’t spare the $630K. Put your money where your mouth is. Those of us in the trenches are getting pretty tired of living with what we’ve come to call “#RattyBoxers syndrome.” We’ll put that cash to use making sure our ground troops can show up at the meetings where they’ll have a chance to make a real difference, at speed. Even the World Summit.

Filed Under: Find the funny, Healthcare, Politics, Social media Tagged With: Bill Clinton, cancer, e-patients, health care reform, Healthcare, healthcare costs, healthcare industry, humor, media

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