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May 27 2019

Surprise medical bills = stress on blast

By cancer, e-patients, healthcare industry, healthcare price transparency

In case you missed it, getting a Really Big Diagnosis like, say, cancer, is a big whack to the wallet. Even if you have titanium-plated insurance (spoiler: there is no such animal in the US healthcare payment system), there will be bills for many, many things.

If you have a deductible, be prepared to build a spreadsheet matrix with complex algebra to calculate how much of what care will be on you. If you have co-insurance – your spouse’s employer coverage, for instance – that’ll add complexity to your algebra.

It’s a lot.

In a piece on the Discover credit card and financial services blog, recent Cancer Club inductee Kris Blackmon lays out how unexpected medical expenses impact people dealing with a Really Big Diagnosis, or any ongoing health issue that requires lots of clinical care – and therefore medical bills – offering a solid strategy for dealing with those bills.

Do your research

Talk to your clinical team’s billing office in advance about what your options are under your coverage plan. You’ll have to do this with each provider and facility you’ll receive care in – Blackmon says she chose to be treated at a major academic medical center because of the one-stop care coordination available in a comprehensive care setting.

Ask all the questions

If you’ve been hanging around these parts for any length of time, you know I’m all about being your own best advocate when getting medical treatment. Kris Blackmon puts mustard on that ball by recommending that, even if you wind up in the emergency department (which can totally happen during cancer treatment), you ask to speak to the billing department rep in the ED before any treatment is ordered, or delivered, so you know what your options are, and what the bill might be for them.

Read the fine print

Yeah, yeah, “nobody reads the Terms and Conditions,” but when you’re getting medical treatment … YOU GOTTA READ ‘EM, KIDS. Reading all of each bill, and lining it up with your health plan coverage, can unearth errors and fact-check the bills you need to pay to meet your deductible. By the way, did you ask if all the clinicians delivering your care were in-network in the previous section? If not … SURPRISE! And not the fun kind with confetti and cake, the not-fun kind with you being on the hook for their charges, thanks to something called balance billing.

infographic medical expenses affect just about everybody

Think it’s just you? Nope. It’s all of us.

Social Workers and Other Organizations May Help You Manage Expenses

When I was dealing with my own Cancer Year, I not only served as my own care coordinator, I was also my own social worker – I was handed a resource sheet by my surgeon’s NP, and then worked the phones and web on my own behalf to find ways to pay the bills that were piling up, as well as the living expenses ditto. Cancer treatment is expensive, and it’s also exhausting – if you have to keep working (which I did) to keep the wheels on your life from falling off. Most hospitals and large health systems have social worker staff to help folks navigate resource options – use them!

What to do? Here’s how others managed.

There’s more!

I’ve shared the highlights of Kris Blackmon’s post on the Discover blog – read the whole thing here. Need some help? Reach out to me here. It takes a village to manage medical care – getting it AND paying for it. Happy to help if you need it.

Nov 10 2018

The who, what, when, where, and why of Cochrane

By e-patients, healthcare industry, participatory medicine

Cochrane logo – it’s a forest plot

If you’ve been paying attention, you know that yours truly got the chance to attend the annual Cochrane Colloquium in Edinburgh in September this year, thanks to a travel stipend from SPM, a #PatientsIncluded bursary from Cochrane UK, the hosts of the 2018 Colloquium, and a stipend from the NHS for the #BeyondTheRoom project to help cover the event for the global audience.

And I’m sure there are a good number of you who are still thinking, “That’s great, but what the heck is Cochrane? And how did they get to be the ones running the ‘Hogwarts Sorting Hat’ of global medical evidence?” Forgive me, but I’m a comedy writer, and that breaks through from time to time, no matter how hard I try to stifle it. Anyway, Cochrane is named for a Scottish doctor, Archibald Leman “Archie” Cochrane, who wrote “Effectiveness and Efficiency: Random Reflections on Health Services” (the link will let you download the whole book in PDF) in 1972.

Archie Cochrane advocated for randomized clinical trials (RCTs) for, well, everything – treatments, practice methods, research protocols, an “all of the things” approach, on a loop – which was not how medicine was being practiced under the prevailing “doctor knows best” practice model in place across the globe. “The art of medicine to preserve autonomy, the science of medicine to preserve authority” rules pointed out by many people seeking to make medical science more science than “because it’s how I do things” – those rules have been snarked at by both your correspondent, and Dr. Al Mulley at Dartmouth, among a host of others.

Archie Cochrane influenced the thinking, and practice, of many other clinicians with his thought leadership on practice variation, practice standardization, and the use of RCTs to fine tune medical science. One of the people he influenced was Iain Chalmers, who, in 1993, founded the Cochrane Collaboration in Archie Cochrane’s memory. Here’s a graf from “A brief history of Cochrane”:

“The Cochrane Collaboration was founded in 1993, a year after the establishment of the UK Cochrane Centre in Oxford, UK. The UK Cochrane Centre arose from a vision to extend a ground-breaking programme of work by Iain Chalmers and colleagues in the area of pregnancy and childbirth to the rest of health care. Inspired by Archie Cochrane’s claim that “It is surely a great criticism of our profession that we have not organised a critical summary, by specialty or subspecialty, adapted periodically, of all relevant randomised controlled trials” (Cochrane 1979), Chalmers and colleagues developed the Oxford Database of Perinatal Trials and a series of systematic reviews published in Effective Care in Pregnancy and Childbirth (Chalmers 1989). The database became a regularly updated electronic publication in 1989, developed into Cochrane Pregnancy and Childbirth Database in early 1993, and formed the basis of the broader Cochrane Database of Systematic Reviews (CDSR), launched in 1995. Work on a handbook to support authors of Cochrane Reviews had begun in 1993, and the first version was published in May 1994. Over its first 20 years, Cochrane has grown from an initial group of 77 people from nine countries who met at the first Cochrane Colloquium in Oxford in 1993 to over 31,000 contributors from more than 120 countries in 2015, making it the largest organization involved in this kind of work (Allen 2006; Allen 2007; Allen 2011). Cochrane is now an internationally renowned initiative (Clarke 2005; Green 2005).”

Since 1993 – only 25 years – Cochrane has spread across the globe, with centers on every populated continent:

Cochrane UK (and their Evidently Cochrane blog, which is terrific)

Cochrane Canada

Cochrane Nigeria

Cochrane Australia (also supporting emerging networks in Indonesia and the Philippines)

Cochrane Japan

Cochrane Chile (hosting the Cochrane Colloquium global meeting in 2019 in Santiago)

The above list is just a sampling – and you may notice that there’s somebody missing. Yes, I’m looking at you, USA. The US did have a Cochrane Center home based at Johns Hopkins in Baltimore, but that closed in February 2018. For now, the best we’ve got is the Cochrane US West Center at Oregon Health and Science University in Portland, Oregon. But that’s a story for another blog post.

On the e-patient front, Cochrane has some terrific stuff on tap. They have a vibrant global consumer presence, via the Cochrane Consumer Network, and a ground-breaking new global citizen science project, Cochrane Crowd, where anyone can take part in the research synthesis process. The Crowd platform provides all the training anyone might need to be able to participate in assessing RCTs and studies, after completing it you’ll be ready to go, sifting through studies and trials to separate the good science from the questionable and not-reproducible stuff.

Cochrane popped up on my radar screen sometime in the last decade or so, during the time that I was scrambling to get on top of managing my parents’ care in the last few years of their lives. It came in handy as I was sifting through my decision tree during cancer treatment ten years ago, and as I’ve become more and more interested in killing off quackery and over-, under-, and mis-treatment in medicine in my work as a citizen science activist and ground-level health policy wonk. If you’re interested in the same things, join the party. We’re all in this together, and Cochrane can help us move the needle toward what I call “Goldilocks medicine” – the right treatment for the right patient, at the right time – at a faster rate.

This post originally appeared on the Society for Participatory Medicine blog

Apr 03 2017

Democratization of knowledge, healthcare edition

By e-patients, healthcare industry, technology

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

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

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

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

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

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

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

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

Jul 24 2016

Patients are Pigs? Wow. Thanks, Medrio!

By cancer, e-patients, healthcare industry, participatory medicine

The infographic below popped up in my Twitter feed when an e-patient colleague from the multiple sclerosis community tagged me with a “what the HELL is this!?!” … and the excrescence below.

Let me set the scene for you – this is digital collateral from a software company, Medrio, that on its website landing page says it provides “simple, fast, and affordable tools for the collection of data in clinical trials.” It appears that the company is all about the cartoon animals, since they’ve got a cartoon cat in a lab coat welcoming you to their digital litter box domain. It also appears that Medrio is happy to think of clinical trial subjects – you know, the ones called “patients,” or, alternatively, “people” – as sus scrofa. If you don’t speak Latin, that’s the species classification for … PIGS.

This points up a pernicious, perpetual problem in too many precincts in healthcare. People/patients are seen either as dumb – possibly even dumb animals – and treated with the same level of respect. It’s not often, though, that an organization that actually thinks of patients this way fully uncloaks, and shows their wrong-headedness in full color.

OK, you’ve waited long enough. The infographic I’m talking about is pasted below. PLEASE make some very loud noise online, show the world that this jerkbaggery will not stand.

medrio patient-pigs infographic

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.

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

May 18 2015

Triple aim shoots wide, film at 11?

By e-patients, healthcare industry, participatory medicine

triple aim logoPaul Levy, the former CEO of Beth Israel Deaconess Medical Center in Boston, put up a post last week saying that the Triple Aim – improving population health, improving the experience of care, improving per capita healthcare cost – was poorly aimed, and totally missing its “make healthcare better” mark. It’s a chewy, tasty read, with an even chewier and tastier thread of comments.

The money shot for me: “the real battles over power, money, customer choice, and cost” are indeed still happening far, far away from the point of care, and compromising the patient’s experience, the community’s health, and the ability to control spiraling costs. Of the three legs of the Triple Aim stool, the cost piece is the biggest barrier to its implementation.

Can you think of any US industry that would willingly transform itself outta $1T+ in revenue per year?

That’s the ultimate economic outcome of the Triple Aim, and I can hear and feel the resistance of the medical-industrial complex to ending their arms race toward “market dominance” via daVinci systems, proton beam facilities, soaring marble lobbies, and equally soaring temples full of hospital beds … when what we really need is hundreds (thousands?) of small clinics across the landscape helping people get or stay healthy via great primary care, not tertiary hospital resurrections.

Payers and big health systems, EHR vendors, policy wonks all negotiate over the patient’s supine form (and the heads of most clinicians, to be fair) to determine how to divide up the $3T+/year their arms race serves up.

Do we have a prayer of Triple Aim in this landscape? I dunno, but I’m fighting a ground war alongside my patient-side band of guerilla compatriots to see if we can drive some revolution from the grassroots. ‘Cause the folks in suits ain’t moving fast enough toward change.

Apr 29 2015

Why I got a QR code tattooed on my sternum

By e-patients, EHR, health records, healthcare industry, medical records

I’ve been heard here on the topic of getting a barcode tattooed on my neck to avoid having to fill out another one of those damned forms-on-a-clipboard at a medical provider’s office. I’ve also been heard all over the interwebz (mostly Twitter) on the excrescence that is poly-portalitis syndrome (PPS), caused by the plethora of portals presented by providers under current EHR adoption drive.

In late 2013, I had a V-8 forehead slap moment, realizing that a QR code – I have created several of those, including the one (different than the tattoo!) on my business card – would be a great way to accomplish my objective. QR code reader smartphone apps are in relatively common use, and I also figured that a tattoo would be a conversation starter in the rooms where I work to shift the medical-industrial complex’s thinking on patient engagement and participatory medicine.

Even though it took me over six months to find a tattoo artist willing to do this – and I live in the 3rd most tattooed city in America, according to a Today Show story in 2010 –  and then another couple months to gather the shekels to pay for it, almost a year ago, on June 18, 2014, I presented myself at Graffiti’s Ink Gallery for my inkapalooza.

This was not my first tattoo rodeo. I had done what I thought was required due-diligence in researching the size and pixel resolution on the QR code itself, and had had a couple of meetings with the artist to make sure we were on the same ink dot. I created a page on this site, password-protected it, created a QR code that linked to that page, and we were good to go.

On that page, after you plug in the password that’s inked at the bottom of the tattoo (and is not fully visible in any picture of it that has been shared online, anywhere), you see two documents:

  • My Microsoft Healthvault [MSFT shut down Healthvault in 2019, I’ve moved my data to GetRealHealth‘s Lydia app] export document in PDF, which has
    • My full health history back to Year 1 of my life
    • Medication record, past and current
    • Allergies
    • Emergency contact
    • Primary care MD info
    • Insurance info
  • My Advance Directive (everyone should have one – build your own by clicking this link)

I think I scared the artist-kid during the actual tattooing process, by the way. For the uninitiated, getting a tattoo on a bony part of your body – skull, spine, STERNUM – can hurt like a mother. I have a large, 5 color tattoo on my right shoulder blade that, 20+ years later, I can still recall hurting pretty hard during its application. I knew going in that this would be ouch-y, but at [redacted] years of age, after navigating cancer treatment and other slings and arrows of outrageous medical fortune, tattoo ouch-ies ain’t a thing in my world.

The artist had, I discovered later, booked out 3+ hours on his schedule for me that day, figuring that I’d be asking for frequent breaks due to the pain of application. I didn’t stop him once, and he finished up in just over an hour. He looked at me in a way that made me think he was waiting for me to eat some broken glass, or a couple razor blades. Again, given my time on the planet and my life experience, 60+ minutes of having my sternum hammered by a tattoo needle wasn’t a big deal.

Why did I do this? Because I’ve been waiting for the medical-industrial complex to deliver on their promise of health information exchange (HIE), the promise that they’ve been making for years, but have yet to fork over. I can, and do, securely move money around the globe at the click of a mouse. I do it via bank accounts, purchase agreements, contracts with clients. Most people do. But my healthcare record – which is MINE, as much as it is the property of the medical providers who gave the care it describes – is in fractured bits and pieces all over ever’where.

So I rolled my own, and nailed it to my sternum. Any questions?

Feb 24 2015

Shared decision making, please

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

You’ve heard me before on the subject of shared decision making (SDM). Short version: I’m an advocate for partnership in medical care. Partnership that includes the values, outcome goals, and cost considerations of THE. PATIENT. Which means shared decision making.

My buddies over at Software Advice have just published the results of a survey* they did in collaboration with the Mayo Clinic’s Knowledge and Evaluation Research (KER) Unit that took a deep dive into what’s happening in the real world with SDM, and what patients who are exposed to the process think of it.

The key findings:

  1. A majority of patients (68 percent) say they would prefer to make collaborative decisions about treatment options with their healthcare provider.
  2. Forty percent of patients say they have participated in SDM before, and 21 percent have done so within the past year.
  3. Most patients surveyed say that SDM improves their satisfaction (89 percent) and makes them feel more involved in the care they receive (87 percent).
  4. Nearly half (41 percent) of patients report that they would be “much more likely” to adhere to a treatment plan developed using SDM.
  5. 47 percent of patients would be “extremely” or “very likely” to switch to a provider whose practice offers SDM.

If you click through to the full article in the 2nd graf, you’ll see a number of graphs and charts reporting on patients’ responses to questions about provider choice and treatment protocol adherence – one of my least favorite words, but it’s a favorite of pharma and healthcare system peeps, so there it is. The pie chart that stood out for me was this one:

Likelihood to Switch to SDM Provider

11-likelihood-switch

 

For the math-challenged, 80% of the patients surveyed were moderately, very, or extremely likely to switch to a healthcare provider who practices SDM. Physicians and other clinicians who interact with patients at the point of care need to digest this: fully informing patients of the treatment options available to them, and working with patients to craft a treatment plan TOGETHER, is a survival strategy for the clinician. Ignore SDM principles at the peril of your continued professional relevance.

This is particularly timely given my upcoming attendance at the Lown Institute’s Road to RightCare: Engage, Organize, Transform conference in San Diego March 8 through March 11. I’ll be hearing from researchers, clinical teams, patient voices, and policy wonks on how to create a right-care healthcare system whose bedrock is shared decision making.

Also, the recent JAMA Oncology articles on the myth of the demanding patient, which myth has formed some of the institutional-side (translation: dinosaur providers) pushback against the wide adoption of patient input on their treatment (in other words: SDM) in the U.S. and elsewhere, are starting to knock down the walls that have kept SDM from becoming the standard medical practice model it should be.

“Nothing about me, without me” is a rallying cry of the participatory medicine movement. Shared decision making is, I believe, part of an overall civil rights issue, since patients who aren’t asked their goals and preferences for treatment are being given care that isn’t their choice. A real hurdle for SDM is going to be the inevitable end-of-life conversation – life is, after all, 100% fatal – that we all have to have, unless we die suddenly in a plane crash or car wreck.

Where are you on the SDM spectrum? Does your doctor talk you through all your options, or just write you a prescription or send you for a scan? “Shut up and do as I say” medicine needs to be consigned to the scrapheap of history. Agree? Disagree? Share your thoughts in the comments.

*Source: Practice Management systems consultancy Software Advice

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