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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 fine print

Yeah, yeah, “nobody reads the Terms and Conditions,” but when you’re getting medical treatment … YOU GOTTA READ ‘EM, KIDS. Reading all of each bill, and lining it up with your health plan coverage, can unearth errors and fact-check the bills you need to pay to meet your deductible. By the way, did you ask if all the clinicians delivering your care were in-network in the previous section? If not … SURPRISE! And not the fun kind with confetti and cake, the not-fun kind with you being on the hook for their charges, thanks to something called balance billing.

infographic medical expenses affect just about everybody

Think it’s just you? Nope. It’s all of us.

Social Workers and Other Organizations May Help You Manage Expenses

When I was dealing with my own Cancer Year, I not only served as my own care coordinator, I was also my own social worker – I was handed a resource sheet by my surgeon’s NP, and then worked the phones and web on my own behalf to find ways to pay the bills that were piling up, as well as the living expenses ditto. Cancer treatment is expensive, and it’s also exhausting – if you have to keep working (which I did) to keep the wheels on your life from falling off. Most hospitals and large health systems have social worker staff to help folks navigate resource options – use them!

What to do? Here’s how others managed.

There’s more!

I’ve shared the highlights of Kris Blackmon’s post on the Discover blog – read the whole thing here. Need some help? Reach out to me here. It takes a village to manage medical care – getting it AND paying for it. Happy to help if you need it.

Pay people for their data – yes, or no?

By healthcare industry, media commentary, politics, technology

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

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.

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 the conduct of a Member” and saying that they would comment further only when the review was complete (confusing, right?).
  • Throughout the Colloquium, conversations went on everywhere but on the platform about this letter, the expulsion of Gøtzsche from Cochrane’s governing body, and what the reasons for same might be. There seemed to be no real detail on “reasons” beyond “behavior,” which behavior was never specifically defined.
  • This took over the entire agenda of the Cochrane Annual General Meeting at the Colloquium, bumping the report from the Cochrane Consumer Network, and other agenda items. Image in this post is from a Cochrane AGM attendee during the meeting.
  • Conversations about this appeared in mainstream media, including the Boston Globe’s STAT News, “Turmoil erupts over expulsion of member from leading evidence-based medicine group“; in the journal Nature, “Mass resignation guts board of prestigious Cochrane Collaboration“; in the BMJ blog, “Trish Greenhalgh: The Cochrane Collaboration—what crisis?” (note: I find this post by Trish Greenhalgh to be the most even-handed of the ones linked so far).
  • Hilda Bastian, a scientist, writer, and cartoonist, put up a great piece on her PLOSOne blog, “Boilover: The Cochrane HPV Vaccine Fire Isn’t Really About the Evidence – but it’s Critical to Science” that captures the issue well, with the bonus of visuals.

I’m a professional communicator, so I’m amazed that Cochrane let the guy they were drop-kicking get the story out first. That’s PR 101 – s/he who gets the story out first owns the narrative. When the drop-kickee got the first announcement out, Cochrane was left in damage control mode, with neither side fleshing out any of the details regarding the “behavior” that led to the drop-kick. The social exhaust of that damage control continues to waft across the landscape. Cochrane will most certainly survive, and I hope that they learned from this series of unfortunate events. Crisis communications planning is totally a thing – a thing I recommend every organization and enterprise get savvy to.

My point? Science is as messy a business as any other human endeavor. As soon as you think you’ve got your hands, and your mind, wrapped around something … it squirrels away, and changes the entire question. Add human behavior and emotion, and stuff can flame up quickly.

Here’s my suggestion: Cochrane needs more ground-level troops – the ones called “patients,” or “citizen scientists,” or just “people” – to participate in the scientific inquiry that forms the body of their work. This is true across all scientific fields, but it’s particularly true in medical science. Human health and care is the ultimate purpose of all medical research, which means that having people/patients included in that work is critical. Much of the “science denial” hooey behind stuff like the anti-vaxx movement and the silliness that is anything Mehmet Oz says, or Gwyneth Paltrow ditto, is rooted in the giant castle walls that have separated people from Important Work In Science with paywalls, and the mindset that said “doctor knows best” when it came to medical practice. But those castle walls are being stormed on the regular since the democratization of knowledge and access to information that arrived when Tim Berners-Lee came up with the World Wide Web at CERN back in 1989.

Medical science is threaded through with uncertainty. Intuition, hypothesis, testing that hypothesis, analyzing results … lather, rinse, repeat. Getting citizen scientists and front line clinicians involved in the creation, analysis, and compilation of the science that informs how humans get and/or stay healthy is a civil/human rights issue, as well as an acceleration-of-discovery play. Paternalism can’t run the table any more. There also has to be an ongoing, robust discussion of that science: is it trustworthy, who paid for it, how much implicit bias was either included or removed, how can population-level science intersect with n-of-1 precision medicine, the 21st century medical science unicorn? Everybody in, nobody out, bring on the inevitable arguments. Scientific papers are basically arguments – don’t be afraid of conflict, from conflict can come consensus, alignment, and progress. Participatory science, it can totally be a thing.

Whither Cochrane? I think it’s up to us, the citizens of the world who care about making healthcare better for everyone. Let’s get to work.

This post originally appeared on the Society for Participatory Medicine blog

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

By healthcare industry, politics

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

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.

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!

By healthcare industry, politics
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?

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 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.

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 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.

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.

ehr-no-one-ever

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 like it’s 1995 (Windows 95 – it’s AWESOME! Not.). Data exchange, a/k/a “interop,” is still a distant dream, which is why I have a QR code tattooed on my sternum as a political statement. “I am my own HIE,” essentially.

What we need here is a “1984” moment in healthcare. Not the George Orwell book, but the Mac computer ad that ran on Jan. 22, 1984 during the third quarter of the Super Bowl.

Epic Systems won’t deliver it. As much as Jonathan Bush would like athenahealth to deliver it … nope. Our “Obi Wan only hope” is going to have to come from a company that’s got a track record – distant or current – of delivering into the hands of consumers easy-to-use tech that has them saying “awesome!” and then … just using it.

ibm-dell-apple-3-way
“Help us, IBM-Dell-Apple. You’re our only hope.”

Which is why I’m saying “help us, IBM-Dell-Apple, you’re our only hope.” I’m not including Google, because they’ve already tried/failed, with GoogleHealth, and then (IMO, stupidly) abandoned the healthcare vertical after one play.

IBM might seem like an odd player to include here, but I know what they’re up to at the Serious Games lab at UNC under gamer-grrl extraordinaire Phaedra Boinodoris. (The Medical Minecraft project is of particular note there.)

Dell is in the personalized-medicine space, particularly in pediatric cancer, where they’ve built the Neuroblastoma and Medulloblastoma Translational Research Consortium (NMTRC) as a tumor board tool across 25 universities and children’s hospitals looking to build some real precision medicine/faster cures to fight children’s brain cancer.

Apple is the only player to serve up an actual consumer device with health apps – the iWatch and the ResearchKit, which turns an iPhone into a research contribution engine for a variety of projects looking at conditions from autism to breast cancer to Parkinson’s disease.

People, consumers, are ready (desperate?) to engage with the healthcare system using the same digital tools they use daily to manage everything from soccer practice to shopping lists to banking: their smartphones. The challenge to the healthcare system is to make tools to make that possible … which they have utterly failed to do, to date.

It’s time to hand the problem to proven consumer-delighters.

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