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Oct 30 2017

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. 

Apr 03 2017

Democratization of knowledge, healthcare edition

By e-patients, healthcare industry, technology

I was lucky enough to be asked to write the foreword to the 3rd edition of Shared Decision Making in Health Care: Achieving evidence-based patient choice, from Oxford University Press. Here’s the text of that forward.

We are at what appears to be a Copernican moment in healthcare, where everything that learned minds thought was true – that the sun revolved around the earth; that miasmas rising from the ground, or humours contained within the human body, caused disease; that only magical beings called doctors could understand or participate in medical care – is being disproved. Medicine stands at a crossroads unlike any other transformation point in its history. As access to information – what I call the democratization of knowledge – has become as simple as the movement of a human finger, the relationship between doctors and the people they care for has undergone a seismic shift. But like many seismic shifts, it’s happening at a level that only those tuned to pick up the signals from it can sense. That I, a patient voice whose only medical knowledge has been acquired as an autodidact with strong research skills, have been asked to write the foreword to the third edition of Shared Decision Making in Health Care is a strong indication that the earth is moving beneath our feet.

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.

Mar 16 2017

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

Jun 20 2016

Primary + People/Patients = Winning?

By healthcare industry, politics

I’ve been all over ever’where so far this year, invited to participate in a number of events that, taken together, seem to indicate there’s some progress being made on “healthcare system transformation,” even if it’s still happening at a glacial pace. One of these events was the Starfield Summit, put together by the Robert Graham Center, which is the policy think-tank arm of the American Academy of Family Physicians. I fielded an invite when the Graham Center reached out to the Lown Institute to ask if there was a patient-type human who might lend something to the conversation as an attendee.

So I took the “let patients help” rallying cry to DC for a couple days of lock-in with a bunch of primary care docs and the wonks who love them. Which, by the way, includes me, which you know if you’ve been paying attention. Primary care docs are the ideal partners for people/patients who are working to shift the USS Medical Industrial Complex aircraft carrier – both primary care MDs and patients are low on the medical-industrial complex power pole, so if we team up, we might be able to boost each other up to start showing up on the power radar.

If you’d like a good overview of the importance and impact of primary care on a health system, something that Ben Miller shared on the first day is a great précis. Money quote from the conclusion, IMO:

Primary care is imperative for building a strong healthcare system that ensures positive health outcomes, effectiveness and efficiency, and health equity. It is the first contact in a healthcare system for individuals […]. It provides individual and family-focused and community-oriented care for preventing, curing or alleviating common illnesses and disabilities, and promoting health.

What I heard, saw, and discussed over the two days tells me that 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.

Mar 16 2016

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

By healthcare industry, media commentary, politics, technology

I’ve been on the road a lot over the last six months, getting the chance to interact with (and, I hope, influence), audiences in health tech and health policy. There’s so much desire for change, search for innovation, and just straight up “desperately seeking [something]” out there, it’s almost hilarious that no real change/shift/what-have-you has yet occurred in the giant $3-trillion/year-and-rising sucking sound that is the American healthcare system.

Which is why I concluded, long ago, that the system would not be re-invented from within, particularly when it comes to the tech side of the party. Since the medical-industrial complex is keeping the fax machine manufacturers of the universe in business, it’s hard not to snort with laughter at tech “innovations” that emerge from inside the complex’s ivory towers.

Tech innovation – on both the consumer and the system side – will come from companies with a proven history of delighting ground-level customers. The ones I like to call “people.” Here’s a Casey-ism that will be appearing in a new report on tech in healthcare from The Beryl Institute:

“My sense about technology, and whether it’s engagement or system improvement or anything in this zone, I think that the change is going to come from outside the healthcare industry. The solutions are going to be delivered by companies or entities that have a history of putting technology in the hands of consumers (people) and having those consumers (people) say ‘awesome!’ and just start using it.”

I don’t think anyone – consumer or clinician – has touched anything related to Electronic Health Records (EHR) tech and said anything resembling “awesome” about the experience.

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.”

Nov 06 2015

Elephants, middlemen, and systems – oh, my!

By healthcare industry, politics, technology

I’ve been MIA here, but I’ve been loud/proud pretty much everywhere else in the last few months. Including here and here.  What follows is a rant based on what I’ve been seeing/doing since last seen on this page.

Elephants

There’s an old joke that goes like this: “What’s an elephant?” “It’s a mouse designed by a government committee.” There’s also the old “elephant in the room” bromide about topics that are not to be mentioned under any circumstances, despite their obvious impact on the issue under discussion. And the “How do you eat an elephant? One bite at a time.” motivational meme, along with the “blind guys describing an elephant” metaphor used to explain the impact of silo-ed thinking.

We’re up to our parietal bones in pachyderms in the healthcare transformation discussion. The biggest one – you can call him Jumbo, or you could call him Dumbo – is always in the room. What I call him is Huckster Nation.

elephant in the room by banksy

Image: Banksy

What do I mean? I mean the underpinning of pretty much all of American culture – the carnival barker sales guy (guy in this usage is gender neutral). We are a nation of flacks, flogging everything from Sham-Wow to space stations, and that includes our healthcare system. Hell, I’m selling myself, or at least I’m offering to rent out the contents of my cranium in exchange for coin of the realm, as are we all, in one way or another.

Americans have taken this to the level of a cultural art form, in that we’ve built our national myth around economic freedom. That it works out to be a literal myth for too many of us – income divide, I’m talking to you – is part of what I’m calling out here, but for the moment let’s focus on the carnival barkers sales guys in US healthcare, shall we?

I’m taking about the ….

Middlemen

Who are the middlemen in healthcare? Apart from the obvious ones – the health insurers, including Medicare, who administer the payment/money side of healthcare delivery – there are a metric sh*t ton of middlemen of all sorts threaded throughout the system. To use a biology metaphor, let’s call the ones that help Good Bacteria and the ones that don’t help Ebola Outbreaks. By the way, I’m defining “help” as an effort at improving something: making care more accessible, creating technology that improves care/care process, research that discovers new treatments.

Here are some examples of Good Bacteria:

  • Organizations that build health literacy tools to improve people’s access to and understanding of healthcare (click here for an example)
  • Open-access scientific journals (click here and here for examples)
  • Companies that build tech that helps patients, or clinical teams, or patients AND clinical teams (click here and here for examples)

Here are some Ebola Outbreaks:

  • Any commercial enterprise operating the healthcare sector that puts ROI above human lives (click here for an example)
  • Not-for-profit healthcare systems that treat humans solely as profit modules (click here for an example)
  • Health insurance companies that allow games of “gotcha” where their covered lives are the game pieces (click here for a Modern Healthcare piece on the issue)

Systems

Which brings me to the whole US healthcare system conundrum, which was summed up pretty well by my friend Dan Munro:

system isn't broken image

Image: Dan Munro

I attended the Population Health Alliance Forum conference recently in DC. I was surrounded by middlemen – some Good Bacteria, some Ebola Outbreaks – as I sat and listened to clinicians, analytics geeks, policy wonks, and carnival barkers sales guys talk about issues in population health. Population health is defined as “the health outcomes of a group of individuals, including the distribution of such outcomes within the group.” Meaning that in most conversations where the phrase appears, you’re talking about Employer Sponsored Insurance (ESI), or Medicare. So the attendees were heavy on the big insurer and big health provider side, with a strong showing in the “we want to sell our stuff to big insurers and big health providers” cohort.

I was, as far as I could tell, the only person wearing the “I’m a patient here, myself” label. I guess I was the patient voice carnival barker sales guy. Hey, we’re all selling something, even if it’s only an idea.

Meanwhile, I’m surrounded by system players in a series of hotel ballrooms in DC. I found myself getting a little shouty with frustration on Twitter:

 

 

 

 

 

That last one – the “what’s the ROI?” thing – was fueled by rage. The US healthcare system, which sucks up $3 trillion-with-a-T every year – making it the most expensive healthcare system in the world, but 11th on the Top 10 list on health outcomes – is stuck on a “what’s the ROI?” loop, driven by the carnival barkers sales guys, while human lives sink below the metric radar. In other words, loot trumps lives.

In the metaphor I’m using in this post, Ebola Outbreaks are overwhelming the Good Bacteria. So here’s what we gotta do – we gotta call out Ebola Outbreaks when and wherever they appear. If you see one, shout it out – preferably in public, like on Twitter! – and tag me. I’ll be “Nurse with the Good Bacteria,” and whistle up both some outrage, and some common sense solutions.

Let’s not keep the insanity that is $3T+/year in exchange for “sorta OK” on a lather/rinse/repeat cycle. Who’s with me?

Jun 18 2015

UPDATE: Patients ARE smarter (and louder) … here’s proof

By e-patients, healthcare industry, media commentary, technology

It’s been a fun week here in Mighty Casey Media Land. We kicked off the week a little early (on Sunday) – the 411 on that is available here, and some of the social exhaust is available on Storify here and here. One member of the e-patient posse worried that the guy was gon’ have to enter witness protection, given the avalanche of opprobrium aimed his way from the expert-patient community.

In an email thread among a group of expert patients working on aggregating and curating patient-useable outcomes reporting tools, Dr. Corrie Painter said she had called the Brookings Institution, the think tank where the author of the US News piece that set my hair on fire does his think-tank thing, and left a terse message on the Governance Studies main line about pontificating patriarchal putzes (technical term).

Given my willingness to talk to anyone, any time, if it moves the needle on healthcare system transformation, I went one better and called the *other* number on the guy’s bio page. I expected to wind up leaving a voicemail, but …

He. Answered. The. Phone.

We talked for about 30 minutes, during which I assured him that I did *not* think that Yelp reviews were the ne plus ultra, or even a thing, when it came to outcome metrics on physicians and other clinical providers of medical services. But, as I pointed out in my “I’m channeling Lewis Black, with boobs, in healthcare here: righteous rage + cutting humor = driving that point home!” post, what real metrics are *available* to patients seeking intel on the expertise and outcomes of the doctors they go to for care?

There are PQRS and Physician Compare data sets, but they’re pretty small beer. Physician Compare serves up Medicare data – just *try* to find intel on a pediatrician, or an obstetrician, in that reporting tool.

In a follow-up post of his own, Yaraghi clarified his position on online review sites like Yelp *not* being the right place for medical provider ratings based on medical training, outcomes, or efficacy of care. His closing graf is the money shot for me:

Patients’ involvement in their medical care is the best thing that could happen to our severely sick health care system. Patients should have access to reliable and valid data to help them decide about their medical provider. They should have the capacity to shop around and visit multiple providers. Healthcare is the most important service we obtain in our life and being able to choose who provides it, in my opinion, is a fundamental patient right. Currently available online patient reviews however, are not the correct measure to rely on when making such a decision.

Net/net here: Niam Yaraghi is a guy with an open mind on the idea of patient expertise. In the days and weeks to come, I hope that the e-patient community turns out in force to engage him in conversation, and to make their case for both patient expertise and the deep need for effective, accessible physician scoring – on number of procedures, on patient satisfaction, on recurrence rates, on all stats relating to the efficacy and humanity of their care – that people can use to find the best doctor for their healthcare needs.

Jun 14 2015

From the Patients Are Smarter Than You Think Desk …

By e-patients, healthcare industry, media commentary, technology

See this UPDATE, too.

Sundays are pretty quiet here in Mighty Casey Media Land. Yeah, there are those Sundays where I read my wall calendar without my glasses on, and totally think it’s Father’s Day when it’s really Flag Day … but that’s about as exciting as it gets most weeks.

Today is one of the latter Sundays, where I not only cause a Father’s Day panic on Facebook (yeah, that’s a thing), but also get Twitter DMs that set my hair on fire. Which you know, if you’ve been hangin’ round this water cooler for a while, is never a good thing.

This morning, I picked up my phone while I was waiting for my coffee to brew, and what ho – a DM from my friend HealthBlawg with a link to a “stupid patients, don’t Yelp doctors” piece on US News with the headline “Online Doctor Ratings Are Garbage.” The piece is by Niam Yaraghi, whose pieces on US News usually have me nodding along in full agreement … but not this time.

In the “don’t Yelp, bitch” piece, Yaraghi essentially tells people they’re too stupid to understand medical care’s value and outcomes, that we should just lie back and think of England and let those nice doctors do their work.

Let’s take ’em in order, shall we?

Patients are neither qualified nor capable of evaluating the quality of the medical services that they receive.

Seriously?? Does Yaraghi know any cancer patients, or people with MS, or ALS, or rheumatoid disease, or diabetes? I’m pretty sure the answer there is “no,” that he knows a whole bunch of polysyllabic “experts” due to his work at Brookings, but very few ASPs (Actual Sick People). The patient community is teaching the clinical community constantly about both medical research and business operations.

I’ll say it again: input from the patient community is, daily, saving the bacon of MDs/NPs/PhDs and other letter-after-name denizens of the medical-industrial complex and their minions.

So slow your roll, Niam, and the next time you meet an ASP, thank them for their *own* work on healthcare quality improvement.

If patients are not qualified to make medical decisions and rely on physicians’ medical expertise to make such decisions, then how can they evaluate the quality of such decisions and know that their doctor’s decision was the best possible one?

It’s spelled S-C-I-E-N-C-E, bitch.

But hey, most of gen-pop (people who are temporarily, not permanently, ASP – like when they break their leg, or get pneumonia) might not be as UpToDate (yes, many of us read PubMed, and even understand it) as a practiced e-patient ASP. So what do most people do when they need to find some on-the-ground help for a health issue? They hit the web … and usually find us. Or Dr. Oz, which is regrettable, but that snake oil PR machine has got a big f**king ad budget. But even if they hit Oz first, they usually wind up with us.

And hey, are DOCTORS even the real experts when it comes to evaluating the efficacy of their treatments? Plenty of evidence suggests that clinicians get as stuck in Usual Suspects-ville as does any other profession. I call it We’ve Always Done It This Way syndrome. It takes 17 years, on average, for proven science to arrive at the point of care. If you get diagnosed with [pick a really big disease], do you want to just trust that your MD is up on all the latest treatment options, or do you want to be *sure* s/he is? Welcome to Dr. Google, dude. Yelp reviews don’t turn up on condition-specific searches, but *we* sure do.

Since patients do not have the medical expertise to judge the quality of physicians’ decisions in the short run and are neither capable of evaluating the outcomes of such decisions in the long run, their feedback would be limited to their immediate interaction with medical providers and their staff members.

I’ve addressed the “science, bitch!” thing above, but let’s drill in on that “outcomes” point, shall we? Have you, yourself, ever tried to find outcomes data on a doctor? Pack a lunch. A lunch that can last for days. Physician Compare on Medicare’s (CMS) site looks like it could serve up some stats … but it doesn’t serve up much beyond “has EHR tech that fulfills Meaningful Use requirements.” Physician Quality Reporting System (PQRS – another CMS data bank project) serves up a whole lotta data – in table or spreadsheet form – but it’s pretty hard to parse “quality” from “takes Medicare” or “participates in PQRS” or “participates in eRX.” No notations as to whether s/he is Dr. Hodad.

How about, rather than bitch about patients who want to serve up UX (User Experience) data on their clinical teams, you use your keyboard to help create some clarity on quality reporting that can be understood BY. AVERAGE. HUMANS.

Instead of the quality of the medical services, patients would evaluate the bedside manners of physicians, decor of their offices and demeanor of their staff.

Bedside manner is no indication of the value of the care received at the hands of a clinician. I’ve had doctors look deep into my eyes, hold my hand, and then do a hard sell for a pharmaceutical product of questionable efficacy for my condition. I’ve taken a show about that on the road (sort of), which you can read about here.

Office decor reviews for doctors’ offices will only add ordnance to the arms race that US healthcare has become, where providers build more and more luxurious settings for us to get questionably effective care in … and then charge us higher fees for that care, since marble is really expensive.

To choose the best medical provider, patients are encouraged to rely on measures of medical expertise and avoid invalid online reviews. 

And just how the French-pressed **** are we supposed to do that, Niam? Having the whole alphabet after your name on a list of medical specialty MDs is no guarantee, at all, of either efficacy of care, or basic humanity.

Dr. Farid Fata had a solid platinum set of credentials as an oncologist – residency at Maimonides Medical Center, an oncology fellowship at Memorial Sloan Kettering, and a respected practice in the Detroit metro area for over a decade – until the FBI burst into his offices on August 6, 2013 to arrest him for fraud. He’d diagnosed and treated people for cancer who did not have cancer. BTW, there were no Yelp reviews for his practice.

Here’s the thing: patients KNOW STUFF. Rather than telling us to shut up and stop Yelping, how about you recommend *listening* as a cure for what ails US healthcare? I’m a Yelp Elite reviewer – that and $4 will get me a crap fancy coffee at Starbucks – who’s a globally recognized patient voice, and I’ve posted four reviews of health/medical facilities (a 3% rate of review in my total number of 141 reviews to date). Two of those facilities are mammography practices. I’ve had breast cancer, so as experts go … yeah, I am one.

I don’t use Yelp reviews on my checklist for choosing a new member of my clinical care team, because I’m an e-patient expert with a massive global network in both the medical and patient communities.

So, hey, Niam, what’s your recommended roll for someone who’s got [insert suspected diagnosis here] and is looking for credible, actionable information to inform their decision tree? Until the clinical side of the house gets their outcomes reporting sh*t together … people gon’ Yelp.

Shut up and deal.

yelp welcome screen

Apr 13 2015

World on fire. Film at 11.

By healthcare industry, media commentary, politics, technology

I wasn’t lucky enough to get a press pass, or a scholarship, to HIMSS15 this year. Given events of the last few days, I’m really sorry I can’t be on the ground in Chicago for what feels like a grassroots revolt brewing in protest of the Centers for Medicare and Medicaid Services (CMS) dropping an announcement, on Friday late afternoon, that they were thinking of gutting the rules for patient access to their own records under the “Meaningful Use” criteria of healthcare reform. You know, the one where we spent something like $6B of taxpayer money. Which was supposed to make care easier, safer, cheaper.

There are phases and stages of Meaningful Use. We’re in MU2 right now. Originally, by the end of the MU2 period (running through 2020), a practice or facility had to demonstrate that 5% of the people/patients cared for in that practice or facility viewed, downloaded, or transmitted their personal health information (PHI) to a 3rd party. That was the criteria for a healthcare provider seeking stimulus $$ for EHR technology deployment [updating: and Medicare reimbursement].

Here’s the “new” rule (clue train: instead of 5%, it’s 1. No, not 1%, one patient) being proposed:

mu2-gutting

I know, right? Friday afternoon, everyone in the industry is heading to Chicago for HIMSS15, who’ll care? Sorry, CMS, but you are totally busted. Here’s data access rights activist Regina Holliday, who’s at HIMSS and whose hair is now on fire.

Speaking of “hair on fire” … so’s mine.

Seems like the Empire is trying to strike back. Or the Capitol (the big-money healthcare industry players who drop money on K Street lobbyists like snowflakes in Boston in the winter of 2014) thinks it’s run over all the Districts (patients, caregivers, families) and has little to fear from our powerlessness. I think they’re wrong. Dead wrong. And they’re about to find out just *how* wrong. Expert, activist patients, along with savvy clinical folks whose hearts are truly in their work, are now assembled in District 13.

My take can be summed up in this image [updated on Tuesday, April 14]:

bluebutton mockingjay mashup image

We are coming for your silos. Because it’s OUR data, and OUR lives.

Mar 25 2015

Report from the front lines: Technology, engagement, and killing paternalism

By healthcare industry, politics, technology

I’ve spent a good portion of the last two months on the healthcare equivalent of the political stump – called the “rubber chicken circuit” in political circles. Thankfully, there was no actual rubber chicken served during these sojourns, although there was the incident of the seductive breakfast sausage, followed by my solo re-enactment (off stage) of the bridal salon scenes from the movie “Bridesmaids.” I will draw the veil of charity (and gratitude for travel expense coverage) over the details of that incident, and just advise all of you to stick to fruit, cereal, or bagels at conference breakfasts. ‘Nuff said.

My original editorial calendar plan was to turn this into a series of posts, broken down by focus into technology and clinical categories. However, since a big part of my goal in standing on the barricades at the gates of the healthcare castle, waving my digital pikestaff in service of system transformation, is breaking down silos … well, go grab a sandwich, and a beverage. This is gon’ be a long one.

HIMSS Patient Engagement Summit

In early February, I headed to Orlando for the first Health Information and Management Systems Society (HIMSS) Patient Engagement Summit. I was asked to participate in two panel discussions, one titled “Patient Perspectives: The State of Engagement,” the other “Can We Talk? The Evolving Physician-Patient Relationship.” Both were moderated by Dr. Patricia Salber, the bright mind behind The Doctor Weighs In.

Being a person with no letters after her name (like Elizabeth Holmes [update: she’s trash, so redacted] and Steve Jobs, I’m a college dropout), I’m used to showing up at healthcare industry events and being seen as something of a unicorn fairy princess. That’s how people commonly called “patients” are usually viewed in industry settings outside the actual point of care. Healthcare professionals/executives are so used to seeing us as revenue units, or data points, or out cold on a surgical table, but not as walking/talking/thinking humans, they can do a spit-take when meeting an official “patient” at an industry conference. Which is fun if they have a mouthful of coffee, but I haven’t seen anyone actually get sprayed yet.

All kidding aside, I really have to hand it to HIMSS for their uptake speed on seeing people/patients as valuable voices in the conversation about healthcare IT and quality improvement. In the time since they first noticed (in 2009, I believe) that people like ePatient Dave deBronkart, Regina Holliday, and others might have something to add to the discussion, they’ve made a visible effort to include people/patient voices in their national programs. Of course, had they not invited patients to present at their Patient Engagement Summit, they would have been line for a public [digital] beating … and so there we were: Amy Gleason, Kym Martin, Alicia Staley, and yours truly, ready to grab a mic and speak some truth.

A favorite tweet during the opening keynote by Dr. Kyra Bobinet, a friend of mine via our mutual membership in the Stanford MedX community:

I see patient engagement as healthcare that nourishes the people it serves, and also as a nutrient for the healthcare delivery system itself. Healthcare itself will get better, in its body (clinicians and all other folks who work inside the system) and in its spirit (its culture), with authentic connection – engagement – with the human community who seeks its help in maintaining or regaining good health.

Both panels went well, and the audience seemed to be both awake, and interested in what we had to say. For those of us who have been working the user – PATIENT – side of healthcare transformation, it’s frustrating that we’re still saying the same things to professional audiences that we’ve been saying for (in my case) close to 20 years now. But those of us on the patient side of this change management rodeo can sense a paradigm shift, and are starting to believe that we’re seeing transformation slowly deploy across the healthcare system. As the oft-repeated William Gibson quote goes, “The future is here, it’s just not evenly distributed.”

 

Patients ARE engaged. We’re working our butts off to get medical professionals and healthcare execs on the same page as us. Like the old story goes, when it comes to bacon and eggs, the chicken’s involved, but the pig’s fully committed. In the bacon-and-eggs of healthcare, patients are the bacon. We’re all in, and we know more, in many ways, about how to fix the system than the “professionals” do. Alicia Staley said, again, what she says consistently to healthcare audiences, “You need a Chief Patient Officer on your board.” So … get one. And we all need to be wary of blaring headlines, which can be very misleading when it comes to the real health risks we all face:

HIMSS Privacy + Security Forum

 

In early March, I winged my way out to San Diego, one of my several hometowns (growing up a Navy kid means you get more than one) for the HIMSS Privacy + Security Forum. I was a panelist for the last session of the conference, which I knew meant that many of the attendees would already be in the TSA screening line at Lindbergh Field, but I was going to share my thoughts with whomever stuck around, even if it was just the busboys. Our session was titled “What Matters Most: Patient Perspectives on Privacy & Security,” and what happened at the end of our panel was something I had hoped for – several of the folks who had stuck around come up to us and said, “that panel should have opened this conference!”

When it comes to IT security, the healthcare industry is rightly terrified, given the epic bitch-slap that a HIPAA fine can be ($1.5 million dollars per incident) – and the irony of the Anthem data breach affecting up to 8.8 million of their members making headlines the week before this conference was not lost on me … or any of the other folks at the HIMSS Forum meeting. Yet it’s critical to note that access, by patients and by clinicians, particularly at the point of care, to all the relevant data necessary to deliver the right care at the right time to the right patient, is still an undelivered promise across the health IT landscape. So don’t be Mordac, Dilbert’s Preventer of Information Services – we have enough of him. He’s like a freakin’ virus.

Hilariously, the day before I traveled to San Diego, I had to threaten a HIPAA complaint to get my records transferred from one provider to another. I had been asking for TWO MONTHS for the rads practice where I had gotten my mammograms 2009 through 2011 (twice a year in 2009 and 2010, given my Cancer Year of 2008) to send my scans and reports to my current mammography radiologist, and it took a voicemail with a HIPAA violation threat to get someone to call me back. My records are so damn secure that NO ONE can get them, except for “Robert in the basement” at [rhymes with … Bon Secours]. It felt like I was talking to Central Services in the Terry Gilliam movie “Brazil.” And people wonder why I have a QR code linked to my health history tattooed on my sternum …

 

Lown Institute RightCare conference

Speaking of right care/right time/right patient, two days after the HIMSS Privacy + Security Forum wrapped, the Lown Institute’s RightCare 2015 conference kicked off just down the street.

Dr. Bernard Lown is the cardiologist who invented the cardiac defibrillator in the 1960s, and who won the Nobel Peace Prize in 1985 for his part in creating the International Physicians for the Prevention of Nuclear War. The Lown Institute, founded to continue the work on healthcare and human rights that Dr. Lown has devoted his life to, states as its mission “We seek to catalyze a grassroots movement for transforming healthcare systems and improving the health of communities.”

In short, this event made me feel like I’d taken a trip in the Wayback Machine to my college days 1970-1973 in the Haight Ashbury in San Francisco … without the LSD, but with all the fire of my youth, mixed with the wealth of mature knowledge I’ve managed to velcro on to myself in the decades since. The real beauty part? There were lots of young people in the room, who are the age today that I was 40 years ago (in my early twenties), speaking up for the human rights of the people served by the healthcare system. The ones commonly called “patients.”

I got a chance at a scholarship to #Lown2015 after meeting Shannon Brownlee during our work on the Patient & Family Engagement Roadmap, and our attendance at Dartmouth’s SIIPC14 “informed patient choice” conference last year. She tipped me off that scholarships were available, I applied, and got lucky by snagging one. Doubly lucky, because it put me in the room while some of the leading voices on the clinical side of medicine called out the industry they work in for being slow to fully enfranchise the people they serve – patients – by being too driven by money, and not driven enough by their own humanity. A sampling:

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

And, because it just ain’t a movement unless this gets thrown down:

The bedrock message here? The democratization of knowledge that’s been delivered thanks to the Information Age has lifted the scales from the eyes of the early-adopter people/patients who are on to what healthcare is now, and what it must become to remain sustainable, or even relevant. Patients are coming up off their knees. The occupants of the ivory towers of medicine must descend from their aeries, or risk being flung from the parapets. Like winter …

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