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Pay people for their data – yes, or no?

January 2, 2019 by Mighty Casey Leave a Comment

funnels representing digital data with money symbols
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.

Filed Under: Business, Healthcare, Media commentary, Politics, Social media, Technology Tagged With: #fypmdata, civil rights, data, data economics, data economy, Healthcare

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

March 16, 2016 by Mighty Casey Leave a Comment

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.”

Filed Under: Business, Entrepreneurs, Find the funny, Healthcare, Media commentary, Politics, Storytelling, Technology, Women in Business Tagged With: digital health, e-patients, health care, Healthcare, mighty casey media, mobile, mobile apps, participatory medicine, smartphones

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

December 7, 2015 by Mighty Casey Leave a Comment

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

  • Die (because hackers)
  • Live longer (because hackers)

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.

 

Filed Under: Business, Find the funny, Healthcare, Storytelling, Technology Tagged With: casey quinlan, data security, e-patients, Healthcare, internet of things, iot, medical devices, mobile apps, technology

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

June 18, 2015 by Mighty Casey 1 Comment

quality scoring image

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.

Thank god. I was worried this guy might need to go into the witness protection program. TY @MightyCasey – #FTW! https://t.co/xIayus5Gao

— Hurt Blogger | Britt (@HurtBlogger) June 17, 2015

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.


Print

Filed Under: Business, Crisis communications, Find the funny, Healthcare, Media commentary, Social media, Storytelling, Technology Tagged With: #epatient, #medx, #shitstormsisters, branding, comedy writing, david harlow, e-patients, expert patients, health care, health care reform, healthblawg, Healthcare, healthcare system transformation, humor, media, mighty casey media, niam yaraghi, participatory medicine, smart patients, social exhaust, Social media, Storytelling, technology, twitter

From the Patients Are Smarter Than You Think Desk …

June 14, 2015 by Mighty Casey 8 Comments

yelp welcome screen

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

Filed Under: Business, Find the funny, Healthcare, Media commentary, Storytelling Tagged With: Business, comedy, e-patients, health care, health care reform, Healthcare, humor, media, mighty casey media, politics, Social media, Storytelling, technology

Security vs. access: threading the needle

April 21, 2015 by Mighty Casey Leave a Comment

pie chart of likelihood of switching providers

The annual big-data party known as the HIMSS conference played out in Chicago – and online – last week. During the event, one of the central issues that arose in the social media conversation under the #HIMSS15 tag involved the one facing patients trying to access their health records, either digitally or on old-school paper: the security/access conundrum. Data that’s accessible to a patient could also wind up accessible to Romanian hackers (you’ve heard me on this topic before), and efforts at making patient data “secure” mean that data is often secure from the patient whose data it is. Patients give their forehead some serious keyboard every day over that one.

The folks over at Software Advice released a report on HIPAA breaches on March 12*, which I only caught up with when I returned from my Mighty Mouth 2015 Tour of Info-Sec and Right Care. Full disclosure, I’m quoted in the report, but that’s not why I’m talking about it here.

Here’s my biggest takeaway from the piece: 54% of the patients surveyed for the report would consider ditching a healthcare provider if that provider had a breach.

Most Patients Would Switch Providers After Breach

pie chart of likelihood of switching providers

 

Key findings in the report:

  1. Forty-five percent of patients are “moderately” or “very concerned” about a security breach involving their personal health information.
  2. Nearly one-quarter of patients (21 percent) withhold personal health information from their doctors due to data security concerns.
  3. Only 8 percent of patients “always” read doctors’ privacy and security policies before signing them, and just 10 percent are “very confident” they understand them.
  4. A majority of patients (54 percent) are “moderately” or “very likely” to change doctors as a result of a patient data breach.
  5. Patients are most likely to change doctors if their medical staff caused a data security breach, and least likely to change doctors if hackers were responsible.

Given the rising number of breach reports hitting headlines, including the massive one that impacted 80 million Anthem customers (possibly including me – not 100% confirmed yet) in January, this is not an issue that will go away. From the expert patient perspective, this is doubly frustrating, because the first thing that happens after a breach headline is the throttling of patient access to our records. Additional sign-on protocols, tighter credentialing, or a full-on “no more digital access” from smaller providers, all laid at the door of “because HIPAA.”

This doesn’t just affect access, it can have an impact on care. Here are the report’s stats on patients withholding information from their medical providers due to breach concerns:

Security Concerns Can Stifle Communication With Doctor

pie chart on patient withholding info

Quoting from the report:

“Health care lawyer and blogger David Harlow is also troubled by our results. Doctors need to get a full picture of a patient’s health history, he explains. If they don’t, the effectiveness of treatment could suffer—or worse, the patient could be harmed. For example, if a doctor is not told about a patient’s current prescriptions, the doctor could inadvertently prescribe a second medication that has adverse interactions with the first drug.

“That’s an invitation for disaster,” Harlow says. “It means we have a lot of work to do to convince people of the safety and importance of sharing information with physicians.”

My thinking on this topic can be summed up in the closing quote from the report, from yours truly:

“Concerns over digital privacy and security have obscured the real conversation, which is, ‘How can we make health care more accessible, frictionless and safe with the data we collect about patients?’”

*Source: Practice Management systems consultancy Software Advice

 

Filed Under: Business, Crisis communications, Healthcare, Media commentary, Politics, Storytelling, Technology Tagged With: Business, casey quinlan, e-patients, health care reform, Healthcare, healthcare technology, HIMSS, HIPAA, mighty casey media, softwareadvice.com, technology

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