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Pay people for their data – yes, or no?

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image credit: CIO Magazine

I was recently part of a trinity of folks debating the idea of paying people for the data they contribute to the digital economy, in healthcare and in all other sectors.

Here’s the full version of the conversation on YouTube, with yours truly taking the “yes” side, Brookings Institution non-resident fellow and UConn professor Niam Yaraghi taking the “no” side, and Jan Oldenburg moderating the debate. It’s an hour long, so pack a lunch!

I put together a shortened audio version of the discussion for my Healthcare Is HILARIOUS! podcast, and that’s here.

You’re invited to weigh in – share your comments here, or on Twitter or Facebook. On Twitter and Facebook, use the hashtag #fypmdata – **** You Pay Me (for my) Data.

There’s a transcript of the entire discussion here: Transcript (in Google Docs)

Links related to issues raised during the debate:

Dr. Latanya Sweeney, data scientist and data privacy thought leader extraordinaire

Data Commons Cooperative

Ciitizen (health data coop)

Humantiv (health data coop)

#My31/Hu-manity (health data coop)

PBS Frontline “The Facebook Dilemma” series (enraging + frightening)

“Selling My Health Data? CUT. ME. IN. BITCHES.” – Casey Quinlan’s manifesto on health data brokering

UPDATE added Saturday, Nov. 17, to reflect possibility that the universe is reading either my mind, or my Twitter feed (possibly both):

Startup Offers To Sequence Your Genome Free Of Charge, Then Let You Profit From It – NPR

Some stories revealing the creep factor in digital health data capture and sale:

Google gobbling DeepMind’s health app might be the trust shock we need – TechCrunch

The quest for identified data: Why some firms are bypassing hospitals to buy data directly from patients – Fierce Healthcare

Period-tracking apps are not for women – Vox

Intellectual property’s vital role in healthcare’s AI-driven future – Pharmaphorum

Startups Plan the Health Data Gold Rush – The Scientist

This post originally appeared on the Society for Participatory Medicine blog in November, 2018.

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

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

video still HXRefactored 2017

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

Democratization of knowledge, healthcare edition

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

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

OUP Shared Decision Making 3rd Ed coverThe knowledge exchange that is the bedrock of shared decision making is creating the mutuality that has been missing in medicine, making a full partnership between doctors and the people they care for finally possible. As is made clear in many parts of this book, building literacy on both sides of the equation is a must for shared decisions – information has to be shared with people in ways they can understand, which makes solid communication skills a must for both patients and anyone in clinical practice. This is true in medical research as well, as the need to understand what people actually want from medicine becomes part of the research process. And the people who look to healthcare for their needs – which is all of humanity – must have a full voice in saying what the value is in the care they choose to receive.

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

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

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

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

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

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.”

Internet of Things (IoT) + healthcare = what, exactly?

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You can’t turn around these days without running into a headline about the Internet of Things (IoT). It seems as if everything from your car to your cardiac pacemaker is talking to everything else on the internet, and we’re all about to

If you’re confused about the whole IoT thing, and what it means to healthcare, you’re not alone.

As buzzphrases go, “Internet of Things” is having its Andy Warhol 15 minutes of fame on an auto-replay loop right now … but what will the actual interconnectedness of the technology we use in our daily lives deliver to us in the way of helping us live better/healthier lives? Will we find ourselves living out a cautionary “I, Robot” sci-fi tale as we become slaves to our IoT robot masters?

The answer is … (wait for it) … “it depends.” And what it depends on is how we humans build and interact with our robot mast … um, the Internet of Things.

The biggest challenge is that healthcare, as an industry, sees the people it serves – we’ll call those people “patients” – as the product, not the customer. Which, I think, goes a long way to explaining why this most human of all industry sectors – the one we seek help from when we get sick – has so resolutely resisted becoming digitally accessible/approachable to its customer base.

If you need a ride, Uber. If you want to shop, Amazon. If you want dinner, Yelp or BlueApron. If you need a doctor’s appointment … well, you can call the office to make an appointment. Or use the portal (if there is one). Or hit up the local urgent care. But there will be plenty of waiting, and it’s unlikely to be a tech-assisted process in any meaningful way.

How could the IoT help you in this situation? Well, if you have an iWatch, or an Android smartwatch (yes, there are such things), you could share your health-related data with your doctor (if s/he has an electronic medical records system that allows for that – pro tip: there ain’t many of those). There are a few consumer-accessible IoT devices that can communicate with clinical teams, like the AliveCor mobile ECG.

The IoT revolution, which allows your refrigerator to alert you if you’re low on milk and your car to text you to remind you it’s time for an oil change, hasn’t really arrived in healthcare. Sure, your iWatch and your Fitbit can send and receive health-related data via the web to you, and to anyone you’ve shared it with, but that “anyone” is unlikely to be your doctor unless s/he is a *very* early-adopter, tech-wise.

For those of us who are early-adopters on the consumer side of tech, this presents an opportunity to be leaders in the healthcare arena by testing and assessing IoT quantified-self and self-tracking tools. When we find something that works well for us – in losing weight, in managing a chronic condition – we can then encourage our healthcare partners (our doctors and nurses) to join in our tech-enabled self-care.

What about the hackers who are lying in wait for all that user-generated data on the Internet of Things? The folks at Arxan sent me the infographic below, which is a great starting place to assess the security of any IoT app or device you’re assessing.

Meanwhile, gotta dash. My Fitbit is reminding me it’s time for a walk.

 

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?