Mighty Casey Media: Comedy Health Analyst

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

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keep calm and sell your data imageRemember when American taxpayers spent over $25B(that’s billion) on digitizing medical records? If you don’t … well, we did.

The last time you went to the doctor, how easy was it for you to see your aftercare instructions online, or follow up on your prescriptions, or get your lab results in the online patient portal?

My guess is that it might have been easy-ish to see stuff in your doctor’s patient portal, but sharing that data from, say, your primary care MD with your ob/gyn or your rheumatologist — unless they were in the same system, in the same practice office — would have been a big NOPE. You would have done what all of us did back in the ’80s, and the ’90s, and the ’00s, and still today — you would have printed it out, or paid for a copy, and then lugged that paper with you to the other MD’s office. Where it would have been stuffed into a paper chart, and/or hand-entered into that practice’s EHR (Electronic Health Record). 20% — that’s one in five — MDs still use paper charts (as of 2016).

OK, so now you’re as up to speed as you’ll need to be for the rest of my point here — American taxpayers have shelled out major moolah to digitize medical records. When it comes to those American taxpayers’ benefits from said digitization, that’s YMMV territory, that right there.

Which makes the major moolah that the healthcare system is minting off of de-IDing and selling the data inside those records pretty infuriating. What, you say, you had no idea that was happening? Not surprising, because the healthcare system DOES. NOT. WANT. YOU. TO. KNOW., since if you did know, you might protest. Or even (gasp) ask to be cut in on that moolah.

Have you ever heard of a company called QuintilesIMS [NYSE: Q]? If not, you’re not alone. IMS Health was founded in the 1950s, and built a market for prescription data collected by their field agents in pharmacies across the US, and then the world. Quintiles was founded in the 1980s as a CRO (Contract Research Organization) recruiting for pharmaceutical clinical trials. IMS merged with Quintiles last year (2016), yielding up the new QuintilesIMS.

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

That’s

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

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

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

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

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

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

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

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

This post originally appeared on my Medium channel. 

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

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

video still HXRefactored 2017

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

Primary + People/Patients = Winning?

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

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

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

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

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

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

20160424_084730

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

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

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

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

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

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

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

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

Core issue? This:

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

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

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

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

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

The afternoon sessions tackled:

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

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

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

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

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

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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.”

Elephants, middlemen, and systems – oh, my!

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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?

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

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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.

If you’d like proof of the kumbaya here, [now updated with video capture] here’s the Google Hangout on Air  hosted by David Harlow, HealthBlawg, who started this whole thing with a Twitter DM.


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