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Media commentary

Tear gas, neoliberalism, and #PatientsIncluded — will it blend?

October 30, 2019 by Mighty Casey Leave a Comment

meme image saying "tear gas, neoliberalism, and #PatientsIncluded - will it blend?"

The tear gas

I traveled to Santiago, Chile recently. My timing was auspicious, since my news-puke bingo card still had an open slot preventing me from screaming BINGO at the top of my lungs. That open square was “get tear gassed” — it got filled at around 11am Atlantic Time on Monday, October 21, as tear gas rolled down Avenida Libertador General Bernardo O’Higgins, called La Alameda by locals. It’s really hard to scream BINGO at the top of your lungs while getting tear gassed, by the way. In case you wondered.

I was in Chile to attend and speak at the annual Cochrane Colloquium, a global meeting for health researchers, science geeks, and health policy nerds from all over ever’where, to share the experience of being part of the first #PatientsIncluded Cochrane Colloquium in Edinburgh last year. The conference was scheduled to start on Tuesday, October 22.

On Thursday, October 17, Chilean citizens — who have had to put up with A LOT over the last sixty or so years — got fed up with ever increasing costs of living and took to the streets to protest a subway fare hike, led by high school students who jumped turnstiles to evade paying the new fare.

photo of supermarket security door with EVADE graffiti
image credit: mighty casey media llc

EVADE become the mantra of the protest, which kept growing over the next couple of days, with some seriously crunchy stuff happening — a Walmart in Valparaiso got burned down, and a Santiago office tower occupied by an energy company burned, too. All of this was ramping up as I traveled from the US to Chile on Saturday into Sunday, October 19 and October 20, so when I got to Santiago on Sunday morning, there was already a curfew on tap, and a whole lot of military dudes in camo and battle gear wandering around the streets toting assault rifles.

I checked into my hotel downtown, and spent a little time looking around the neighborhood. Everything — restaurants, cafes, stores — was closed, except for a few mini-marts around the corner, which had folks lined up to buy groceries at each one. I joined one of the lines, and bought some stuff for dinner in my hotel room.

Meanwhile, my email inbox was stacking up with traffic about the coming Cochrane conference, and whether or not it was actually going to happen, given the rising tide of rage in the streets across the country. On Sunday mid-day, Cochrane decided to cancel the event, “[d]ue to the worsening situation of civil unrest across the city of Santiago.”

Which brings me to Monday, and my news-puke BINGO! moment. In a fruitless search for an ATM or casa de cambio (currency exchange) downtown, I wandered a widening circle around my hotel, winding up on La Alameda around the time that protests were set to kick off around 11am, and getting my snoutful of tear gas. I had dressed for cool-morning-then-warming weather, so I had a shirt that I’d taken off as the temperature rose on my pasear — I wrapped that around my face, and moved away from the rolling miasma of 2- chlorobenzaldene malononitrile (CS), aka tear gas.

As a former news-puke type human who has also studied history, along with living some of it directly, getting tear gassed in Chile was … kinda perfect. I grew up in a military family — US Navy, to be precise — with a dad who was not just a Top Gun (fo’ realsies) fighter pilot, but also an historian and political economist. I spent my childhood through young adulthood surrounded by history books, foreign policy journals, military briefs (declassified, of course), and at least three metropolitan dailies delivered to our door. And that was just dad — mom was Science Girl, so there was also scientific reading of all sorts available throughout the house. So of course I wound up in the news business.

My dad was always happy to talk to me about global events, and emerging history — also called “the news.” The only rule was whatever was discussed in the house, stayed in the house. His military gig, and rank, meant he had all sorts of information and knowledge. That my coming of age happened in the late 1960s through the 1970s means that he and I had all kinds of deep, crunchy conversations about everything from the Vietnam War (dad was not a fan) to Watergate (he was not a Nixon fan) to economic issues like the oil crunch (did I mention that political economy thing? He wound up with a Masters from University College, Dublin).

I learned a lot, including how to apply critical thinking, from dad. And the Jesuits — I grew up in a Catholic family, so Jesuits were always a risk — got in there, too, since they’re considered the intelligentsia of <snark font> Holy Mother Church Universal and Triumphant </snark font>, and I attended a Jesuit university.

So that’s the tear gas part — and a whole lot of backstory.


The neoliberalism

Neoliberalism is an ideology and policy model that emphasizes the value of free market competition. It first appeared as a word/concept around the turn of the 20th century, when all sorts of intellectual fist fights were going on over “communism or nah?” and “capitalism or nah?” I’m not going to go into a whole history of classical liberalism — short snort definition is “political philosophy and ideology in which primary emphasis is placed on securing the freedom of the individual by limiting the power of the government.”

Confused yet? I swear I’ll stop with the definitions now.

Neoliberalism became the very favorite thing of Milton Friedman, a University of Chicago economics guy who became the father (figuratively) of the Chicago Boys, a group of Chilean economists who wound up influencing Chilean monetary and economic policy under the Pinochet dictatorship, which was in power 1973–1990. Pinochet was a charming little despot, who led a military coup to overthrow the elected president of Chile, Salvador Allende, with the support of the Nixon Administration.

Chile became a proving ground, a laboratory, for neoliberalism as an economic and political theory put into practice. If that whole “free market competition” thing in the definition makes you think of Ronnie Reagan and Maggie Thatcher, you’re not hallucinating. They were neoliberals, dedicated to proving that free markets solve everything. Got a societal or economic problem? Free markets will solve it! Lower taxes, stop making so many rules (aka “regulations” or “laws”), just let a free market fix everything!

Which is great if you already have a little money, or even a job that pays a living wage. If you don’t have either of those — sorry, loser! “Free market” for you will mean you’ll be free to pay the market price for, or just do without. Neoliberalism is all about freeing up capital by lowering taxes on people with high incomes, or with big investment portfolios. If you’ve noticed that many countries, including the US, have been dealing with rising income and economic inequity, you can lay that at the door of neoliberal economic practice.

So the folks in Chile who are burning down Walmart and setting fire to energy company office towers have a point. They’re mad as hell, and they’re not going to take this <neoliberal bullshit> any more.

photo of woman holding cardboard sign saying "neoliberalism was born in Chile and will die in Chile"
image credit: @UptownBerber on Twitter

As an official old, I’ve been around to see the impact of neoliberalism on global politics and global development. “Free market” thinking has mostly wound up putting what both capitalism and communism call “the means of production” — the stuff that makes the stuff that gets sold in/on the markets — in the hands of an ever-shrinking number of people and organizations. Neoliberalism, as a 20th century political philosophy, was brought into being by folks like the all-American Koch family who, after working with Stalin and Hitler in the early days of both Stalinist USSR and Nazi Germany, put their finely tuned libertarian-now-called-neoliberal political POV to work in the US.

They promoted anti-communism by buddying up with the John Birch Society, and started a “Freedom School” in Colorado Springs to promote their Ayn-Randian/rugged individualism/every man (and it’s really always men) for himself philosophy. They birthed the American hard right. If you want the whole story in almost excruciating, but very well written, detail, read “Dark Money: The Hidden History of the Billionaires Behind the Rise of the Radical Right” by Jane Mayer. Buy a bottle of bourbon to drink while you read it — you’ll thank me for suggesting that.

Back to Chile and neoliberalism. The “Chile miracle” — where Chile sported the most vibrant economy in South America — was seeded by democracy under Allende, not by Pinochet, although Pinochet kept getting the credit. Here’s a good explainer on that by Heraldo Muñoz, “Is Augusto Pinochet responsible for Chile’s success?” [spoiler: nope]

So that’s A WHOLE LOT — a mile wide and about a millimeter deep — about neoliberalism.


HTF does #PatientsIncluded come in here?

I’m SO glad you asked!

One of the reasons the folks in Chile are in the streets is that the government is trying to fully privatize the Chilean healthcare system. As an American, I can testify to what a totally shitty idea that is.

Rather than just me banging on about this, here’s the summary points from an article on PLOS Medicine, “Chile’s Neoliberal Health Reform: An Assessment and a Critique” (published in 2008):

  • The Chilean health system underwent a drastic neoliberal reform in the 1980s, with the creation of a dual system: public and private health insurance and public and private provision of health services.
  • This reform served as a model for later World Bank–inspired reforms in countries like Colombia.
  • The private part of the Chilean health system, including private insurers and private providers, is highly inefficient and has decreased solidarity between rich and poor, sick and healthy, and young and old.
  • In spite of serious underfinancing during the Pinochet years, the public health component remains the backbone of the system and is responsible for the good health status of the Chilean population.
  • The Chilean health reform has lessons for other countries in Latin America and elsewhere: privatisation of health insurance services may not have the expected results according to neoliberal doctrine. On the contrary, it may increase unfairness in financing and inequitable access to quality care. [emphasis mine]

That I traveled to Chile to speak about #PatientsIncluded at a global health research and policy conference, as the citizens of that country said AH HELL NAH to being the policy version of a bunch of lab rats in the neoliberalism experiment, is some delicious irony. And why I actually kind of enjoyed being tear gassed on La Alameda — as an American, I know my own country is on the wrong side of “you break it, you bought it” in Chile. We broke this. So we own it. I learned that from my dad, in our long discussions of world politics over decades.

One of the chants I heard on the streets in Santiago was “no son unos 30 pesos, son unos 30 años” — “it’s not about 30 pesos, it’s about 30 years.” The ghost of Augusto Pinochet, who was finally deposed in 1990 after 17 years of torturing, disappearing, and murdering his own citizens, still haunts, perhaps even rules, in Chile in 2019. March 11, 2020 is the 30 year mark since Pinochet got drop kicked from office. Chileans are still recovering from Pinochet Syndrome, along with the rest of the world that got jiggy with neoliberalism, thinking that unrestrained free markets would be just awesome.

Participatory medicine is a core principle in #PatientsIncluded. Participatory democracy — individual participation by citizens in political decisions and policies that affect their lives, often directly rather than through elected representatives — is #CitizensIncluded. Simply putting “the grownups” — doctors, in the case of medicine; elected officials, in the case of democratic government — 100% in charge is a bad idea, since patriarchal or dictatorial bullshit can ensue.

Putting any other “grownups” — folks with lotsa money and/or power, in either medicine or civil government — in charge delivers plutocracy.

We all need to be grownups. Which is why #PatientsIncluded came into being in medicine — let patients help build systems, and policies, that work for everyone — and why participatory democracy, which sometimes comes in the form of people taking to the streets to say …

… is a hallmark of people standing up for their rights as human beings, and as citizens.


So … tear gas, neoliberalism, and #PatientsIncluded — will it blend?

It will, because all humans deserve to be provided with the basics of a dignified life, which include shelter, water, food, education, meaningful work for which they are paid a fair wage, and a voice in the circumstances of their lives, the lives of their families, and of their community.

They’ll face tear gas to tear down neoliberal bullshit, and the inequity it breeds, and demand to be included in building a world where human dignity and human rights are the prime directive.

photo of books, posters, and flyers from Archive of the Graphic Resistance, Santiago Chile
image credit: mighty casey media llc
books and posters in the collection of the Archive of the Graphic Resistance, Santiago Chile

A Twitter thread as lagniappe …

meme image saying "tear gas, neoliberalism, and #PatientsIncluded - will it blend?"
image credit: casey’s brain

This piece originally appeared on my Medium page.

Filed Under: Find the funny, Healthcare, Media commentary, Politics, Social media, Storytelling Tagged With: #patientsincluded, chile, cochrane, cochrane colloquium, human rights, neoliberalism, politics

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

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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