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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?

From the Patients Are Smarter Than You Think Desk …

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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

Security vs. access: threading the needle

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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

 

Cost and Price and Cost, oh my!

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I am beyond tired of watching blind guys – the healthcare industry – feel up the elephant – people-commonly-called-patients and their preferences when it comes to interacting with the healthcare system.

When I read the post this infographic was embedded in, I found myself shaking my head (again) and thinking that the people who really need to know what’s in said post (patients) would wind up in My Eyes Glazed Over Land about three grafs in.

 


Telling costs from costs from charges

Via: The Advisory Board Company

When oh when, O Healthcare, will you start talking to us (people-commonly-called-patients) like sentient beings, instead of supine objects over whom you discuss “important things” while leaving us uninformed and pocket-picked, solely on your whim?

Healthcare.gov and me: I win!

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Unless you’ve been living under a rock since October 1, you’ve heard that Healthcare.gov, the site where Americans can shop for health insurance, had a rocky start in life. OK, it was an epic mess.

I was one of the people who was eager to jump on the site on October 1, since I haven’t had health insurance since I completed cancer treatment in 2008. That cancer diagnosis and treatment put me in the pre-existing condition pile, which put renewal insurance premiums for my individual coverage at an eye-popping level. You can read the details on that here. On October 1, I hopped on my Mac, and surfed over to Healthcare.gov … and had the same experience everyone else seemed to be having:

healthcare.gov error message image
image credit: forbes.com

That continued over the following seven days, with me developing a nice little flat spot on my forehead from head/desk-ing my way through many attempts per day at getting past the first step of creating a profile on the site. Even when I had completed that process of creating a profile, every time the site announced “Success! Click here to continue.” I clicked “there” and … got a blank page.

On October 8, I realized that I, and the site’s developers, might have missed something. I was using Google Chrome, my default browser, and the dominant browser across the web. Could it be that the dim bulbs that built the Frankenstein that is the Healthcare.gov site optimized the site only for native browsers? I opened Safari, and discovered that yes, they were indeed that dim, because even though the site loaded at the speed of a slug on Quaaludes, it did load. And “Success!” allowed me to continue the enrollment process. No blank pages.

I re-enacted scenes from 1995, when I would log on to Netscape to download email on my dial-up connection: open the page, hit “go,” and then make coffee. When I returned with a hot cup of joe, I’d repeat the process on each subsequent page, working in another tab while the site loaded the next page in the process. I managed to complete the entire enrollment process, save for the last “pull the trigger” step of hitting the ENROLL button, because I wanted to make sure I had the money for my first month’s premium available. Which turned out to be unnecessary, since when I did hit the ENROLL button, I got a message saying that my selected insurer would be contacting me about billing. That conversation happened a few days ago, and I’ve paid my first month’s premium.

As of January 1, 2014, I’ll have health insurance again for the first time since December 31, 2008. WIN.

Here is the upside of what I saw in my voyage through Healthcare.gov:

  • Even though my state is one that announced it “hated Obamacare, would not be building its own marketplace, and we hate Obamacare,” there was a wide array of plans offered to me.
  • I could compare plans side-by-side.
  • Premiums were a wide range, with some surprises: the lowest-premium Bronze Plan had 0% co-insurance (I wasn’t on the hook for a percentage of cost on covered services), with higher premium plans tagged with 25% co-insurance.

Here’s the thing that made me go “WTF?”:

  • Only the Bronze Plans are HSA-friendly. HSA=Health Savings Account, essentially 401(k)s for healthcare. Individuals can sock away $3,300/year (in 2014) of pre-tax money in a dedicated savings account for healthcare costs, with people over 55 allowed to sock away an additional $1,000 for a total of $4,300 in 2014. Since all the Bronze Plans I was offered had deductibles of $5,500 or more, with the plan I selected carrying a $6,350 deductible, it would seem reasonable – fairer? – to allow consumers to fund their HSAs annually to match the level of their deductible.

On the whole, this is a big win for me, and other uninsured people who fell into the “pre-existing condition” bucket. By the way, just being female was considered a pre-existing condition until the Affordable Care Act passed. In spite of the views of Fox News talking heads (all male, of course), gender equality needs to exist in all phases of public life, including health insurance.

Bottom line? I win.