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Apr 12 2016

An open letter to Pres. Bill Clinton

By cancer, e-patients, healthcare industry, politics

Dear Bill,

I think I can call you Bill, since we’ve known each other since early 1989, the first time I actually met you, at the Democratic Governor’s Conference at the Franklin Institute in Philadelphia.

Oh, you don’t remember me?

No surprise, I was buried in the front row of the press gaggle, helping cover the meeting for the Today Show. I continued to cover you – on the campaign trail in ’92, at Madison Square Garden when you were nominated, and throughout your 8 years in office, including l’affaire Lewinsky – for years. So we’re blood, brother.

This morning, I read a piece in MedCityNews about your $630K in speaking fees for two appearances, in 2013 and 2014, at the World Patient Safety, Science and Technology Summit in Dana Point, California.

My head exploded.

You see, I have myself been working for years on transforming the healthcare sector into something that serves humanity, not corporate bottom lines or C-suite ivory tower dwellers. I’ve been doing this based on my direct experience, as a family advocate and caregiver for two members of the Greatest Generation, and then as my own advocate through cancer treatment.

I know how screwed up the US healthcare system is. I also, thanks to the fact that I’ve been (a) loud and (b) indefatigable, know that the global healthcare system ain’t exactly all beer and skittles, either, but the US system is particularly remarkable in its ability to strip off $3-trillion-with-a-T in revenue every year, in exchange for serving up 11th place in the global Top 10 of healthcare system quality.

As I mentioned, my head exploded at the $630K speaking fees you received for keynoting at the World Summit over two years. You see, I get invited to all sorts of national healthcare system transformation shindigs, often to appear on the platform myself, usually as part of a panel. My voice apparently has some sort of value, since the invitations keep rolling in for me to share my perspectives on how to fix our fractured, unsafe, crazy-train healthcare delivery system.

However, I’m not paid in high-dollar speaking fees. I’m usually paid in warm handshakes, cold bagels, and occasional airfare. In other words, I’m working as what amounts to slave labor a volunteer in service of transforming a system that, as I mentioned, manages to suck up $3T/year (20+% of US GDP), and still manages to kill somewhere between 200,000 and 400,000 people a year through preventable error.

So here’s my pitch. I invite you to contribute $630,000.00, in whatever split you choose, to the Society for Participatory Medicine and the Lown Institute’s RightCare Alliance.

The Society for Participatory Medicine is dedicated to “a model of cooperative health care that seeks to achieve active involvement by patients, professionals, caregivers, and others across the continuum of care on all issues related to an individual’s health. Participatory medicine is an ethical approach to care that also holds promise to improve outcomes, reduce medical errors, increase patient satisfaction and improve the cost of care.”

The Lown Institute is a collection of researchers, doctors, nurses, policy experts, and just plain people-patients (sensing a theme here?) that “seeks to catalyze a grassroots movement for transforming healthcare systems and improving the health of communities.” Their RightCare Alliance “is the first grassroots social movement that brings together health professionals, religious and community groups, and the public. Together we are working toward a society in which the right care is accessible by all. We believe this will be made possible through a collaborative process that engages local healthcare institutions and the community in the stewardship of resources for health.”

C’mon, Bill. It’s not like you can’t spare the $630K. Put your money where your mouth is. Those of us in the trenches are getting pretty tired of living with what we’ve come to call “#RattyBoxers syndrome.” We’ll put that cash to use making sure our ground troops can show up at the meetings where they’ll have a chance to make a real difference, at speed. Even the World Summit.

Nov 06 2015

Elephants, middlemen, and systems – oh, my!

By healthcare industry, politics, technology

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?

Jun 18 2015

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

By e-patients, healthcare industry, media commentary, technology

It’s been a fun week here in Mighty Casey Media Land. We kicked off the week a little early (on Sunday) – the 411 on that is available here, and some of the social exhaust is available on Storify here and here. One member of the e-patient posse worried that the guy was gon’ have to enter witness protection, given the avalanche of opprobrium aimed his way from the expert-patient community.

In an email thread among a group of expert patients working on aggregating and curating patient-useable outcomes reporting tools, Dr. Corrie Painter said she had called the Brookings Institution, the think tank where the author of the US News piece that set my hair on fire does his think-tank thing, and left a terse message on the Governance Studies main line about pontificating patriarchal putzes (technical term).

Given my willingness to talk to anyone, any time, if it moves the needle on healthcare system transformation, I went one better and called the *other* number on the guy’s bio page. I expected to wind up leaving a voicemail, but …

He. Answered. The. Phone.

We talked for about 30 minutes, during which I assured him that I did *not* think that Yelp reviews were the ne plus ultra, or even a thing, when it came to outcome metrics on physicians and other clinical providers of medical services. But, as I pointed out in my “I’m channeling Lewis Black, with boobs, in healthcare here: righteous rage + cutting humor = driving that point home!” post, what real metrics are *available* to patients seeking intel on the expertise and outcomes of the doctors they go to for care?

There are PQRS and Physician Compare data sets, but they’re pretty small beer. Physician Compare serves up Medicare data – just *try* to find intel on a pediatrician, or an obstetrician, in that reporting tool.

In a follow-up post of his own, Yaraghi clarified his position on online review sites like Yelp *not* being the right place for medical provider ratings based on medical training, outcomes, or efficacy of care. His closing graf is the money shot for me:

Patients’ involvement in their medical care is the best thing that could happen to our severely sick health care system. Patients should have access to reliable and valid data to help them decide about their medical provider. They should have the capacity to shop around and visit multiple providers. Healthcare is the most important service we obtain in our life and being able to choose who provides it, in my opinion, is a fundamental patient right. Currently available online patient reviews however, are not the correct measure to rely on when making such a decision.

Net/net here: Niam Yaraghi is a guy with an open mind on the idea of patient expertise. In the days and weeks to come, I hope that the e-patient community turns out in force to engage him in conversation, and to make their case for both patient expertise and the deep need for effective, accessible physician scoring – on number of procedures, on patient satisfaction, on recurrence rates, on all stats relating to the efficacy and humanity of their care – that people can use to find the best doctor for their healthcare needs.

Jun 14 2015

From the Patients Are Smarter Than You Think Desk …

By e-patients, healthcare industry, media commentary, technology

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

Mar 25 2015

Report from the front lines: Technology, engagement, and killing paternalism

By healthcare industry, politics, technology

I’ve spent a good portion of the last two months on the healthcare equivalent of the political stump – called the “rubber chicken circuit” in political circles. Thankfully, there was no actual rubber chicken served during these sojourns, although there was the incident of the seductive breakfast sausage, followed by my solo re-enactment (off stage) of the bridal salon scenes from the movie “Bridesmaids.” I will draw the veil of charity (and gratitude for travel expense coverage) over the details of that incident, and just advise all of you to stick to fruit, cereal, or bagels at conference breakfasts. ‘Nuff said.

My original editorial calendar plan was to turn this into a series of posts, broken down by focus into technology and clinical categories. However, since a big part of my goal in standing on the barricades at the gates of the healthcare castle, waving my digital pikestaff in service of system transformation, is breaking down silos … well, go grab a sandwich, and a beverage. This is gon’ be a long one.

HIMSS Patient Engagement Summit

In early February, I headed to Orlando for the first Health Information and Management Systems Society (HIMSS) Patient Engagement Summit. I was asked to participate in two panel discussions, one titled “Patient Perspectives: The State of Engagement,” the other “Can We Talk? The Evolving Physician-Patient Relationship.” Both were moderated by Dr. Patricia Salber, the bright mind behind The Doctor Weighs In.

Being a person with no letters after her name (like Elizabeth Holmes [update: she’s trash, so redacted] and Steve Jobs, I’m a college dropout), I’m used to showing up at healthcare industry events and being seen as something of a unicorn fairy princess. That’s how people commonly called “patients” are usually viewed in industry settings outside the actual point of care. Healthcare professionals/executives are so used to seeing us as revenue units, or data points, or out cold on a surgical table, but not as walking/talking/thinking humans, they can do a spit-take when meeting an official “patient” at an industry conference. Which is fun if they have a mouthful of coffee, but I haven’t seen anyone actually get sprayed yet.

All kidding aside, I really have to hand it to HIMSS for their uptake speed on seeing people/patients as valuable voices in the conversation about healthcare IT and quality improvement. In the time since they first noticed (in 2009, I believe) that people like ePatient Dave deBronkart, Regina Holliday, and others might have something to add to the discussion, they’ve made a visible effort to include people/patient voices in their national programs. Of course, had they not invited patients to present at their Patient Engagement Summit, they would have been line for a public [digital] beating … and so there we were: Amy Gleason, Kym Martin, Alicia Staley, and yours truly, ready to grab a mic and speak some truth.

A favorite tweet during the opening keynote by Dr. Kyra Bobinet, a friend of mine via our mutual membership in the Stanford MedX community:

I see patient engagement as healthcare that nourishes the people it serves, and also as a nutrient for the healthcare delivery system itself. Healthcare itself will get better, in its body (clinicians and all other folks who work inside the system) and in its spirit (its culture), with authentic connection – engagement – with the human community who seeks its help in maintaining or regaining good health.

Both panels went well, and the audience seemed to be both awake, and interested in what we had to say. For those of us who have been working the user – PATIENT – side of healthcare transformation, it’s frustrating that we’re still saying the same things to professional audiences that we’ve been saying for (in my case) close to 20 years now. But those of us on the patient side of this change management rodeo can sense a paradigm shift, and are starting to believe that we’re seeing transformation slowly deploy across the healthcare system. As the oft-repeated William Gibson quote goes, “The future is here, it’s just not evenly distributed.”

 

Patients ARE engaged. We’re working our butts off to get medical professionals and healthcare execs on the same page as us. Like the old story goes, when it comes to bacon and eggs, the chicken’s involved, but the pig’s fully committed. In the bacon-and-eggs of healthcare, patients are the bacon. We’re all in, and we know more, in many ways, about how to fix the system than the “professionals” do. Alicia Staley said, again, what she says consistently to healthcare audiences, “You need a Chief Patient Officer on your board.” So … get one. And we all need to be wary of blaring headlines, which can be very misleading when it comes to the real health risks we all face:

HIMSS Privacy + Security Forum

 

In early March, I winged my way out to San Diego, one of my several hometowns (growing up a Navy kid means you get more than one) for the HIMSS Privacy + Security Forum. I was a panelist for the last session of the conference, which I knew meant that many of the attendees would already be in the TSA screening line at Lindbergh Field, but I was going to share my thoughts with whomever stuck around, even if it was just the busboys. Our session was titled “What Matters Most: Patient Perspectives on Privacy & Security,” and what happened at the end of our panel was something I had hoped for – several of the folks who had stuck around come up to us and said, “that panel should have opened this conference!”

When it comes to IT security, the healthcare industry is rightly terrified, given the epic bitch-slap that a HIPAA fine can be ($1.5 million dollars per incident) – and the irony of the Anthem data breach affecting up to 8.8 million of their members making headlines the week before this conference was not lost on me … or any of the other folks at the HIMSS Forum meeting. Yet it’s critical to note that access, by patients and by clinicians, particularly at the point of care, to all the relevant data necessary to deliver the right care at the right time to the right patient, is still an undelivered promise across the health IT landscape. So don’t be Mordac, Dilbert’s Preventer of Information Services – we have enough of him. He’s like a freakin’ virus.

Hilariously, the day before I traveled to San Diego, I had to threaten a HIPAA complaint to get my records transferred from one provider to another. I had been asking for TWO MONTHS for the rads practice where I had gotten my mammograms 2009 through 2011 (twice a year in 2009 and 2010, given my Cancer Year of 2008) to send my scans and reports to my current mammography radiologist, and it took a voicemail with a HIPAA violation threat to get someone to call me back. My records are so damn secure that NO ONE can get them, except for “Robert in the basement” at [rhymes with … Bon Secours]. It felt like I was talking to Central Services in the Terry Gilliam movie “Brazil.” And people wonder why I have a QR code linked to my health history tattooed on my sternum …

 

Lown Institute RightCare conference

Speaking of right care/right time/right patient, two days after the HIMSS Privacy + Security Forum wrapped, the Lown Institute’s RightCare 2015 conference kicked off just down the street.

Dr. Bernard Lown is the cardiologist who invented the cardiac defibrillator in the 1960s, and who won the Nobel Peace Prize in 1985 for his part in creating the International Physicians for the Prevention of Nuclear War. The Lown Institute, founded to continue the work on healthcare and human rights that Dr. Lown has devoted his life to, states as its mission “We seek to catalyze a grassroots movement for transforming healthcare systems and improving the health of communities.”

In short, this event made me feel like I’d taken a trip in the Wayback Machine to my college days 1970-1973 in the Haight Ashbury in San Francisco … without the LSD, but with all the fire of my youth, mixed with the wealth of mature knowledge I’ve managed to velcro on to myself in the decades since. The real beauty part? There were lots of young people in the room, who are the age today that I was 40 years ago (in my early twenties), speaking up for the human rights of the people served by the healthcare system. The ones commonly called “patients.”

I got a chance at a scholarship to #Lown2015 after meeting Shannon Brownlee during our work on the Patient & Family Engagement Roadmap, and our attendance at Dartmouth’s SIIPC14 “informed patient choice” conference last year. She tipped me off that scholarships were available, I applied, and got lucky by snagging one. Doubly lucky, because it put me in the room while some of the leading voices on the clinical side of medicine called out the industry they work in for being slow to fully enfranchise the people they serve – patients – by being too driven by money, and not driven enough by their own humanity. A sampling:

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

And, because it just ain’t a movement unless this gets thrown down:

The bedrock message here? The democratization of knowledge that’s been delivered thanks to the Information Age has lifted the scales from the eyes of the early-adopter people/patients who are on to what healthcare is now, and what it must become to remain sustainable, or even relevant. Patients are coming up off their knees. The occupants of the ivory towers of medicine must descend from their aeries, or risk being flung from the parapets. Like winter …

Feb 18 2015

EHR technology: Match.com without a happy ending?

By EHR, health records, healthcare industry, media commentary, medical records, technology

My last two posts explored the question of the doctor/patient relationship in the context of romantic relationships. The first one asked if we were anywhere close to getting engaged, the second looked at the possibility that the whole enchilada needed some intervention-level relationship counseling.

In the couple of weeks since, I’ve had some interesting digital and face to face conversations about digital communication tools, patient engagement, and the doctor/patient relationship that have led me to ask if the crop of EHR (Electronic Health Record) systems in current use across the land, as part of Obamacare’s drive toward healthcare system quality, safety, and access (or, as I like to put it, to the tune of “Old McDonald Had a Farm,” EHR, HIE, E-I-E-I-O!), aren’t analogous to online dating sites like Match.com.

healthcare cupid imageWhich leads me to the observation that the EHR tech I see – all of it, from Epic to Practice Fusion to athenahealth to NextGen to Cerner – can in many ways be compared to Match.com. You put in personal data – name, personal details, outcome goals – and the technology (supposedly) helps you toward your goal. With EHR, that’s best-health, with Match.com, it’s a romantic relationship, but both take data input, digitize it, and claim to provide solutions based on that input.

And I have to say that my observed success ratio on both EHR technology and online dating is similar. As in: mostly it feels like “failure to launch.”

So … go grab a cup of coffee, or a bottle of water. This will be a lengthy look at that question, but I promise to bring it home with at least a couple of laughs along with my pointed observations.

The leading lights of healthcare IT haven’t made the doctor-patient relationship any easier to create and maintain than Match.com has for romatic relationships. For every success story, there are hundreds (thousands? millions?) of examples of bitter frustration. With the billions (yes, with a B) spent on buying and implementing EHR systems, the phrase “meaningful use” – which was supposed to be the demonstration of clinical and patient communication tools to enable better quality healthcare – has become a punchline.

A couple of weeks ago, I shared a post from The Health Care Blog by Bob Wachter, an interview with Beth Israel Deaconess Medical Center CIO John Halamka, on my social media channels. In it, Halamka said that only 3% of patients wanted their health records kept locked up tight behind virtual doors, so he had to lock up the data of the other 97% to keep the 3% happy. When I shared that post on my LinkedIn profile, it opened a conversation about that statement, such as what the heck the underlying facts to support it were.

“It’s interesting that the 3% figure was not referenced. I am not in the health informatics field, nor do I have time to do an in depth literature review for discussion. However, a quick Google search yields several informative studies. One small study (n=30) of patient preferences found that patients wanted granularity in terms of what they want to share, or not share. No participant wanted to universally share ALL information. Another study (n=105) reported that 1 in 2 patients hid medical information from their own doctors.”

In other words, is that 3%/97% statement the equivalent of creating convenient details about yourself on an online dating profile? When I asked a few people in the e-patient zone about this, I heard this story about how a major health records system in Boston [spoiler alert: Halamka’s IT system] basically spewed garbage instead of useful patient health history data when they opened the data taps to the now-dead Google Health. So, apparently it’s exactly like confabulating facts on an online dating profile. Also, some additional reading led me to a story on CIO about an epic system failure, also in Boston [spoiler alert: I’ll let you figure out what/why], that tied up an entire hospital network’s system for five long days in November 2002.

Back to my metaphor, of EHR tech being analogous to online dating. If the communication partner you’re talking to says they’re a 42 year old architect in Cambridge, or the lab that’s just completed the path report on your biopsy, can you trust what they’re saying? Is there accessible, verifiable information to support the claim? Can you believe what you’re seeing? Can you even SEE what’s really there?

Both of those scenarios rely on trust, and a sense of security. And the ability to actually SEE. WHAT’S. GOING. ON. As Mordac, the “preventer of information services” in the Dilbert comic strip, says, “Security is more important than usability. In a perfect world, no one would be able to use anything.”

I had the opportunity last week to be part of the Health Information and Management Systems Society (HIMSS)’s first Patient Engagement Summit in Orlando. Yep, more acronyms – E-I-E-I-O. The two panels I was part of talked about the current state of the doctor/patient relationship, and the overall event was all about how technology can either support, or hinder, that relationship. The crazy part is that both the clinical side of healthcare – doctors, nurses, researchers – and the patient side – the rest of us – are desperately determined to get engaged (with each other), get married (create the best possible outcomes), and live happily ever after (better community health for EVERYBODY!).

The trouble is, I’m afraid, that the tools that are supposed to be the grease on the rails to making that happen – the digital communication systems that hold our care data – are set up by Mordac. Screaming headlines about stuff like the recent Anthem breach are like screaming headlines about sharp rises in sexual assault figures – they’re a real buzz-kill for trust between possible relationship partners.

If you actually know me, you know I’ve taken a rather extreme step toward fostering relationship clarity, doctor/patient-wise. It’s the image that is my Twitter avatar (click that link to see it), and it is a real 3×3″ QR code tattooed on my chest. I can’t say that it has any effect on my dating profile (I bailed on online dating years ago), but it has made many of my healthcare-relationship interactions … interesting.

Can I, or any of us, trust health IT and EHRs to help make our healthcare relationships happy and successful? Or are we stuck in the slough of despond that is Match.com?

Jan 27 2015

Does the doctor-patient relationship need marriage counseling?

By healthcare industry

The healthcare system is all about building patient engagement lately. Which makes me ask: if we get to engagement, will we ever get married? And if we do … will we wind up needing marriage counseling?

patient engagement cartoonShort answer: we already need marriage counseling, and we’re not even officially engaged yet.

Herewith is the evidence that the doctor (and health system)-patient relationship needs marriage counseling, stolen adapted from a post on YourTango.com.

  1. You aren’t talking – Given the state of digital, or even analog, communication in healthcare, how can doctors and patients talk? Even when we’re in the same room, it’s conversation-us interruptus, given the whole 10 minutes we have for face to face interaction. And remember the last time you emailed your doctor with a question, and got an answer that day? Oh, right. That was the 14th of Never. Thank you, health IT infrastructure of doom, which is so dedicated to the security of our medical data that NO. ONE. CAN. SEE. IT.
  2. You see your partner as an antagonist – The healthcare system seems dedicated to keeping doctors and patients in an adversarial relationship. Doctors rat us out for our poor compliance in medication regimens without asking if we can afford said meds. Patients worry that their insurance premiums will go up if they tell the truth about stuff like smoking, or eating habits. Neither side seems capable of climbing off the “forces set in opposition” ledge. And the band plays on … getting less and less healthy in the process.
  3. You’re keeping secrets – See #2, and know that antagonists don’t share information well with each other. Doctors keep secrets from patients, i.e. how much treatment options will cost, with payers being fully indicted co-conspirators on that secret-stashing. Patients keep secrets, too, on stuff like cutting pills in half so that fiercely expensive medication will last twice as long. So we’re not talking, we’re forces set in opposition, and we’re keeping secrets. Next up, Divorce Court.
  4. You’re financially unfaithful – Doctors are keeping costs a secret (see #3, and it’s not really their fault, but still …), and patients aren’t being truthful about what treatment options they can afford, so they’re buying snake oil that Dr. Oz is pushing in the hope that it will work as well as the medication they can’t afford for their [insert condition here]. Which only guarantees bigger bills down the road. Everybody loses – money, health, lives – here.
  5. You’re living separate lives – No talking. Walled barricades. Secrets and lies. Money trouble. This relationship might as well be the Hatfields and the McCoys, or even the Russians and the Ukrainians. With 10 minute forced-march conversations, and little chance for touch-points in between, this isn’t a relationship, it’s armed camps on opposite banks of a wide river. Who speak different languages.

Can this marriage be saved?

I – and a whole host of other folks – think it can, but it’s going to take some serious work. And, most importantly, a whole lot of support from the village we all – all of us, humanity at large – live in. We need to flip the entire relationship paradigm of healthcare on its head, and put patients and their doctors in charge of deciding what our relationship/marriage means.

We have to be honest and transparent with each other. Lay down our arms, knock down the barricades, and reach out to each other for help and comfort. Let’s recommit to our relationship, shall we?

May 09 2014

Employer-backed health insurance plans on life support?

By healthcare industry

tipping point road sign imageI’ve been heard in these precincts and elsewhere on the topic of employer-backed group health insurance, and the reasons why I believe it’s an idea whose time has gone. Granted, I’ve felt like a little voice crying in the wilderness, but with a firm conviction that I was just an early adopter of this opinion.

So imagine my glee when a headline popped up in my Google+ news feed that the Robert Wood Johnson Foundation had published a study showing a distinct downward trend in the number of companies paying for employee health insurance.

The key findings:

  • The percentage of non-elderly people with employer-sponsored insurance declined 10.2 percentage points from 69.7% to 59.5% over the study period while pubic coverage increased 3.1 percentage points.
  • While most states saw “significant declines” in employer-sponsored insurance coverage, the range was wide—from New Hampshire (73.8% coverage) to New Mexico (48.0% coverage).
  • Employer-sponsored insurance coverage varied by income. It fell less (2.8%) for high-income groups (400% federal poverty level [FLP] or above) than for those with lower incomes (200& FPL or below) where the fall was 10.1%.
  • Nationally, the percentage of private-sector firms offering employer-sponsored insurance fell from 58.9% to 52.4% (although the percentage of workers eligible for coverage at firms that offered employer-sponsored insurance held steady). The take-up rate also fell from 81.8 percent to 76.3 percent. Small firms offering coverage declined (67.7% to 56.3%) while at large firms it remained essentially unchanged.
  • Single-person premium costs doubled ($2,490 to $5,081); family premiums rose 125 percent ($6,415 to $14,447); employee contributions increased (17.5% to 20.8% of the total premium).

In short, less than 60% of adults who are employed full-time now have employer-backed group health insurance coverage. My response in the G+ thread? HALLELUJAH.

The prospect of losing group health insurance scares the pants off of those who still have that coverage. What I say to those who are currently pants-ing themselves in fear of losing their coverage is: keep calm, and carry on. There is a path to group coverage – even keeping the coverage you now have – if your employer wants an exit strategy on paying for health insurance for their employees.

I’m not an HR expert. I’m not in the insurance industry. I’m a journalist and writer who has built up, over a couple of decades, a wealth of both research and anecdotal experience in buying healthcare, buying health insurance, and being a member of the great unwashed, um, un-insured. When it comes to healthcare and the purchasing of same, I’ve been there, done that, have the t-shirts/knife scars/stories to prove it.

glass spilling imageHere’s my recommendation on how the scenario of shifting group health insurance from “company pays” to “individual pays” unfolds:

Employer chooses give-employer-backed-the-Heisman option

  • Smart employers will raise this issue in a conversation with their employees, not as a done deal. This will take at least 3-6 months of discussion, team meetings, all-hands meetings, and will likely include at least a few opportunities for people to gnash their teeth and rend their garments, because this will scare the pants off of them. That’s the first rent garment: the pants.
  • The idea needs to be shared as an ultimate win for the employees (it is), not as “we don’t wanna pay any more” whinging.
  • Your HR and marketing teams will be invaluable resources here. Work with them ahead of making any announcements about the plan to create online and handout resources for your employees that will help them walk themselves through the plan and process. All of these resources should have a solid answer to any employee’s “what’s in it for me?” questions.
  • UPDATE: [added as a result of a conversation on Facebook] Employers need to look at what they’re paying in insurance premiums for their crew, and adjust salaries to help defray the premium costs that will, as a result of this decision/process, be coming directly out of their employee’s pockets. This should be (a) obvious and (b) freakin’ obvious.

Selling the roll-your-own option to employees

  • If this is your first trip down the change-management path (if it is, how long have you been in business?? really??), hire a change management expert to work with you on this. If it’s not your first change-management rodeo, you already know you’ll be doing this.
  • Work with that change management team and your health benefits broker – who will continue to be a critical player and your BFF throughout and after this process – to build a plan that will, over 6-12 months, shift from “company pays” to “individual pays” on health insurance premiums.
  • Your benefits broker will be the expert on maintaining the existence of “the group” under the new regime. Given that the same people are being covered, there should not be a big uptick in premium cost. If there is, your broker can horse-trade to keep premiums as flat as possible.
  • I strongly recommend shifting, over the two years conversations that follow “we’re changing this whole thing” and the implementation of same, to a high-deductible health coverage plan that includes a health savings account (HSA) if you have not already done this.
  • Here is where things get interesting (really) – you’re going to have to spend some money short-term to save money long-term. The money you’ll spend is to fully fund each and every employee’s HSA to the extend of their annual deductible. If their annual deductible is $5,000, you put $5,000 in their HSA. Yes, I can hear the screaming, but here’s the thing: you’ll only have to do that once. Once you’ve fully funded everyone’s first year’s deductible, they’ll make contributions (via payroll, pre-tax) each pay period to their HSAs. The amount of that contribution will be their choice.

leaning stack of quarters imageGroup health insurance, 12 months later

  • Premiums are paid by your employees, not by you. Your payroll deductions system will be funneling regular employee contributions to their HSAs. You can be a mensch and match HSA contributions if you want. Your payroll deductions system can also help your employees pay their health insurance premiums – your broker can advise you on how to set that up in the planning phase of setting up your Brave New Health Insurance World.
  • You’ll be devoting a bit of HR time to helping your employees and your broker work together on managing the group plan, but you will no longer be footing the bill for health insurance. As said in the last bullet, you can be a mensch and kick in on their HSAs – that’s now a true benefit of working for you, right?
  • Worried about the Obamacare penalties for not offering health insurance coverage to your crew? (Here’s a handy chart from the Kaiser Family Foundation that outlines those penalties.)Don’t, and here’s why: if you have fewer than 50 employees, you’re off the hook. If you have more than 50 employees, that penalty is $2,000/employee. Annual health insurance premiums currently average around $5,000 for individuals and $14,000 for family coverage. I’m not a mathematician, but all I need are basic arithmetic to know that $2,000 saves you between $3,000 and $12,000 per employee in that first year. There’s your salary increase funding mentioned in the getting-started bullet list.

Important considerations and actions

  • HSAs are currently not allowed to pay insurance premiums. Get your state and federal representatives to start looking at changing those laws.
  • Join those calling on state insurance commissions to make health insurance products more 50-state (like Geico and Allstate) rather than the state-by-state hodge-podge that currently exists.

Think I’m outta my mind? That I’m singing a solitary chorus of crazy here? Not so much. Sears and Darden Inc. (Red Lobster, Olive Garden, and LongHorn restaurants) have initiated health benefits changes that are mighty like what I outline above.

That’s my story, and I’m stickin’ to it. Got an opinion you’d like to share? Want to beat me up in the comments? Go for it.

Oct 10 2013

“Patients included.” On ‘roids. In a good way.

By e-patients, healthcare industry, participatory medicine

medicinex regina holliday painting

I had the great good fortune of being tagged as an ePatient Scholar for the 2013 edition of Stanford Medicine X. That allowed me to sit at the feet – literally, since the ePatients were the mosh-pit for the three day conference plenary stage – of some of the best and brightest minds in healthcare. And guess what? Many of those best/brightest were … PATIENTS.

patients included logo

(c) Lucien Engelen

MedicineX (a/k/a MedX and #medx) is the uber Patients Included medical conference. It grew from seeds planted at conferences like Health 2.0 and Patients 2.0, for which seeds-to-beautiful-flowers gardener credit goes to Dr. Larry Chu and his team from Stanford Anesthesiology AIM Lab, who seem to prestidigitate rabbits out of hats without breaking a sweat. Or the hats. Or the rabbits.

MedX – in my opinion, at least – trumps every other Patients Included event by not just including patients, but by putting them front and center throughout the program. In fact, I cannot think of a session that I attended that didn’t have someone who was there primarily as a customer of healthcare (commonly called “a patient”) on the platform, presenting or participating in a panel discussion.

My ePatient socks were knocked off from jump thanks to the opening keynote by Michael Seres and Marion O’Connor on “The New Engaged Patient,” which was the morning keynote on Friday. Michael uses his blog as his personal health record, up to and through a lifetime battle with Crohn’s disease that led to his becoming the 11th patient to ever receive a bowel transplant, and only the 6th to survive that transplant experience. Michael is hilarious, and Marion is exactly the sort of caring brainiac any patient would like bedside as s/he battled a life-threatening illness. Here’s the video of their session:

The rest of the day played out as a firehose of ePatient awesome, including the first presenter to bring me to tears: Sara Riggare, a brilliant woman who is, among many other things, an engineer and a Parkinson’s patient. During the panel discussion on “The Self-Tracking Patient,” and my (somewhat sobby) conversation with Sara afterward, was when I fully realized, even though I’d talked about it last year on one of my blogs, that I had been born an ePatient. Well, maybe not born, but them that brung me into the world also brought me to ePatient-cy. I felt my late father, whose Parkinson’s laid him low, and then to rest, over 10 years ago, standing by me as I listened to Sara talk about her own self-tracking and self-advocacy. My dad was a warrior – literally, a US Navy fighter pilot – and brought that warrior spirit to his battle with Parkinson’s. I’d like to think that Big Mike would be proud of the work I do today to bring sense, and sensibility, to the most human of all sciences: medicine.

The Friday sessions ended with a “What If Healthcare …” panel discussion, conveniently tagged for the Twitter-verse as #whatifhc (click that link for a Symplur transcript of the conversation as it unfolded live). This session is the only one that pressed my buttons in a not-good way, and here’s why: there were a group of white-dude brainiacs, and one not-a-white-dude, on that panel. Don’t get me wrong, I like white dudes. Hell, I’ve married two of ’em (NOT at the same time!). But I found it sort of anachronistic that, as the “dream big” panel on the first day of a Patients Included medical conference on the campus of a major medical school (Stanford Med), the participants on that panel were so very white-dude, with the notable exception of healthcare artist/activist Regina Holliday. Regina herself mentioned the very-not-diverse makeup of the panel during the session. I made the observation on Twitter, as I listened to the panel’s conversation, that healthcare in the US is a great wealth-transfer system … but as a health-transfer system?

Saturday opened with something for which I was utterly unprepared: hearing first-hand about the project that won the 2012 Intel ISEF Prize. Jack Andraka is the 16 year old kid from Baltimore who, at 13, decided that not having a reliable early-detection test for pancreatic cancer was a terrible thing. He resolved to create that test … and he did. It’s been patented in the US, and is in the process of being patented globally. Here’s the first-look video of his hilarious and inspiring call to action for open science:

Frankly, I count hearing that talk, and meeting Jack later that day at the MedX reception on the Dean’s Lawn, as the highest high point of my MedX experience. I told Jack that I couldn’t wait to see what he did next, but that even if he decided to rest on his uber-science-geek laurels with his mesothelin discovery, he’d given a gift to humanity unlike any other since Jonas Salk. Visit his website to keep track of this approachable, funny, huge-hearted young man who has the mind of a god.

The other big high of my MedX time was finally – FINALLY – being in the room with all three of the women who birthed #BCSM, one of the most powerful healthcare communities on Twitter. My ePatient journey may have been started by the voyage with my parents through their health issues, but it was forged into hardened steel by my own breast cancer experience. Connecting with Alicia Staley was one of the things that helped turn my book, Cancer for Christmas, into an Amazon bestseller in ’09. I spent much of the conference touching base with the #BCSM crew, who were in attendance in force at MedX. It was #BCSM Summer Camp!

The conference closed on Sunday with a keynote by Vinod Khosla, “2025: 20% Doctor Included?” Khosla’s viewpoint – which I share – is that technology will provide more reliable and efficient diagnostic tools, removing the mis-diagnosis risk that leads to most medical errors. He also stated that transformation of the healthcare system will not happen from within. Khosla backed up his positions with evidence, and I was nodding so hard in agreement I risked whiplash. It was the perfect close for the epic firehose of forward-thinking that was MedX 2013. Here’s the first-look video of Khosla’s talk:

What will I remember most about my MedX experience? I’ve listed some of it above, but even as I write this post I realize how much more mental food was served up during those three days. There were the conversations that happened over coffee, during lunch, with a frosty beverage in the Sheraton bar. I met people I’d known online for years, but had not had the opportunity to hug and thank for the impact they’d had on my life until MedX put us in the same room.

The Honor Roll there (in totally random order):

The list of people who I had not known before MedX, and who literally blew me away with their heart and insight? Here’s another random list:

And the amazeballs of awesome that is Zöe Chu:

zoe chu photo

4

What did I learn at MedX? I learned that there’s hope. Hope for healthcare, hope for humanity, and hope for every single person who winds up a patient (and hey, we’re all patients, right?). The key is that medicine is a team sport. It requires the full participation of everyone in every health-related transaction.

So pick up your ball, and let’s play together, shall we?

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