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#CochraneForAll + #BeyondTheRoom = #PatientsIncluded on blast

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Red Hot Chilli Pipers at the Colloquium | image credit: Simon Williams Photography

I won the big platinum #PatientsIncluded ring (much better than brass) this year with an opportunity to attend the Cochrane Colloquium, the global health science and health services research meeting that happens somewhere on Planet Earth every year. This year it was hosted by Cochrane UK, with the venue in the heart of Edinburgh, one of the best little cities in the world.

Since Cochrane UK was determined to sport the Patients Included badge, they started inviting people/patients from around the world to think about applying for a scholarship (in UK-ese, a bursary) when the starting gun fired in the spring of this year. They have a very effective Twitter presence, so I got pinged early. I volunteered to serve as an abstract reviewer, on the theory that every little bit (of contribution) helps, both for getting great content and demonstrating one’s enthusiasm for the project. When the application process opened, I was ready, and hit the “get a letter of recommendation from a Cochrane research group” daily double when Gordon Guyatt, the father of evidence based medicine in the 20th/21st centuries, and his entire MAGIC team wrote and signed my letter. THAT was a really good day around here!

When word arrived that I had been awarded a scholarship, there was also news that I’d won a couple of bonus rounds on travel assistance – one was a travel stipend from the Society for Participatory Medicine (thanks, guys!), and the other was being selected to be part of the Beyond The Room team for the conference. Here’s what that was about, directly from the Cochrane Colloquium page inviting applications:

“Also new this year is that we’re putting together a team to take the event #BeyondTheRoom. This digital conference service was started in 2016 by André Tomlin from the Mental Elf who saw an opportunity to increase the reach and impact of health events by live tweeting and podcasting from them, to involve people virtually and facilitate a much more democratic conversation. The #BeyondTheRoom team will include André and his colleague Douglas Badenoch, myself and Selena from Cochrane UK, and some new recruits – perhaps it could be you!”

Did someone say … podcast? Since I spent decades working as a broadcasting tech and producer, have produced podcasts for medical societies for the last decade, and started production on my own podcast “Healthcare Is HILARIOUS!” this year, this seemed like a dream gig. And it was. Not only was I able to fire on all cylinders when it came to my skill set, I got to do what I always loved doing while working as a journo all those years in TV news: talk to people doing really interesting stuff, and spread the word about what they’re doing.

For four days in September, my old life (net news producer) and my new life (epatient citizen scientist policy wonk storming the barricades in service of systemic shift) meshed into a perfect little machine.

Here are the pieces I produced, with links to listen and some notes on each one:

This is the first of a few posts about my Cochrane experience I’ll be putting up here. The next one will be a what’s-what on Cochrane in general, and all the amazing stuff they’re doing to break/fix that “it takes 17 years for 50% of clinicians to adopt new evidence in practice” thing.

Stay tuned!

This post originally appeared on the Society for Participatory Medicine blog

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

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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. 

When it comes to healthcare policy, I’m “Occupation: Foole”

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From HX Refactored in Boston in June 2017, this – “Jeopardy Meets The Price Is Right, Healthcare Edition”

video still HXRefactored 2017

HXR 2017: Casey Quinlan: Jeopardy + The Price Is Right: Health Care Mashup Edition 

Democratization of knowledge, healthcare edition

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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.

OUP Shared Decision Making 3rd Ed coverThe 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 anyone in clinical practice. This is true in medical research as well, as the need to understand what people actually want from medicine becomes part of the research process. And the people who look to healthcare for their needs – which is all of humanity – must have a full voice in saying what the value is in the care they choose to receive.

Getting to that place of mutuality is still a big challenge for the healthcare system, though. The practice variation so well illustrated by the Dartmouth Atlas remains a roadblock, as does the lingering paternalism embedded within medicine itself. Co-creation of anything – from dinner to a decision about cancer treatment – requires all involved to be present, and equal, in the task at hand. That’s a particular problem for underserved or disadvantaged patient communities, and in the factory model that healthcare has become for much of the clinical side, of healthcare delivery.

So what’s a patient, or a doctor, to do? The most powerful force in healthcare system transformation is yet to be fully unleashed, but the shared decision making approach so thoroughly explored in this book could cry havoc, and unleash the dogs of full partnership. Because if people, and the medical professionals who care for them, actually form an ongoing partnership, “system transformation” will happen without the need for yet another million dollar blue ribbon panel convened in service of answering that thorny “what do patients want?” question.

Technology holds much promise for enabling and accelerating this partnership, but it also presents hazards moral and practical. How can we help someone understand their medical condition if they can’t read? How do we make informed choice a reality, and not just a radio button on an iPad screen? How can we ensure that the technology systems deployed to help us manage care don’t become our robot overlords? I see shared decision making – both science of and practice of – as the clinical pathway to resolving those questions, and to unlocking humanity’s full potential.

If that sounds like hyperbole, I invite you to envision a world where people, and the medical professionals who help them work toward their health goals, are fully engaged with each other in that work. That would create a landscape where people would feel empowered to live their lives to the fullest. Sure, chronic conditions would still exist. Cancer would still be with us. No one gets out of here alive, but being able to live to the full extent of whatever one’s gifts, and one’s time, are is a gift in and of itself. Which would in turn yield gifts in the way of productivity, creativity, and community on a global scale.

Homo medicus, meet homo sapiens. Partnership is not only possible; it’s essential if we are, as a species, to unlock our full potential. Starting with one of the most trust-imbued of human relationships – that of patient and doctor – and strengthening it through the mutuality of shared decision making, who knows what we could bring forth into the world? Let’s work together to find out.

Make America Sick Again!

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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

Primary + People/Patients = Winning?

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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.

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

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:

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:

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

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

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.