I’ve beenheard here on the topicof 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 Galleryfor 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
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?
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.
A majority of patients (68 percent) say they would prefer to make collaborative decisions about treatment options with their healthcare provider.
Forty percent of patients say they have participated in SDM before, and 21 percent have done so within the past year.
Most patients surveyed say that SDM improves their satisfaction (89 percent) and makes them feel more involved in the care they receive (87 percent).
Nearly half (41 percent) of patients report that they would be “much more likely” to adhere to a treatment plan developed using SDM.
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
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’sRoad 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 articleson 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.
Spending one’s days on the advocacy beat out here on the Wild Wild Web can be hugely rewarding. Like, say, when you start getting recognized by organizations like the WHO as a strong voice for people-who-are-patients.
Then there are the days when you get called f***ing a**hole by strangers for simply speaking up.
Just being a woman online (guilty as charged) can be enough to draw the gimlet eye, and ire, of a mob of trolls. The #gamergate mess – if you click that link, pack a lunch, a raincoat, and some serious antibiotics – is an example of that.
I recently tripped over a compelling piece on the Guardian’s site. The piece, by Lindy West, was about how she had been hard-trolled by someone who had gone so far as to create a Twitter handle that mimicked Lindy’s recently dead father, who she grieved for deeply. And who used that Twitter handle to troll her about her stance on rape threats.
My dad was special. The only thing he valued more than wit was kindness. He was a writer and an ad man and a magnificent baritone (he could write you a jingle and record it on the same day) – a lost breed of lounge pianist who skipped dizzyingly from jazz standards to Flanders and Swann to Lord Buckley and back again – and I can genuinely say that I’ve never met anyone else so universally beloved, nor do I expect to again. I loved him so, so much. ~ Lindy West
Lindy West is no stranger to the experience of being trolled. She’s a prolific, funny writer who’s talked openly about being a fat girl at the gym, about the toxicity of the “men’s rights movement,” about sexuality, about comedy … the girl’s got content. And trolls love to gang up on women on the web.
So put yourself in the place of a young woman, who recently lost her beloved dad, who suddenly finds a stranger co-opting her dad’s name and image, and then aiming threats of physical violence at her via the handy-dandy trolling tool known as The Internet.
What made this piece stand out was the payoff – after she shared on Jezebel.com how much this Twitter troll had wounded her by making rape jokes, and threats, using a handle whose avatar was a photo OF. HER. DAD. … she heard via email from the troll himself. I won’t put any spoilers here, because I want you to read the piece yourself. And maybe even listen to the recent This American Life episode that features a story about Lindy + the Troll.
My point? I think Lindy’s right – feed the trolls until they explode. Advocacy requires disturbing the status quo, which risks some serious pushback from those who are in that status quo’s driver’s seat. Ask any woman who’s blazed a trail outside “the woman’s place” – Boudicea, Susan B. Anthony, Golda Meir, Dr. Elizabeth Blackwell – what it’s like to take on the boy Mafia status quo. Push for change, and be aware you’ll need all the ordnance you can muster.
Because what the haters really want is for us to shut up. What trolls want is our silence. We have to meet that with a serious, and steady, “THAT’S. NOT. OK.” chorus.
Now that I have, for my sins, been tagged as a patient engagement expert, I figure that entitles me to the occasional rant on the topic of the healthcare system – particularly the US iteration thereof – and its utter inability to understand how to connect and communicate effectively with its customer base: patients.
If you’ve been a patient, for anything beyond a short trip to your primary care doc for something simple (and easily diagnosed) like a laceration or a minor infection, you know that arriving at the doors of The Medical-Industrial Complex is like being the new kid in school.
There’s an old joke about bacon and eggs – the chicken is involved, but the pig is committed. In the ongoing sketch comedy/Shakespearean tragedy that is medical care. the clinical teams who deliver care, and the facilities in which they deliver it, are most certainly involved. Patients? We’re fully committed. We are engaged, we are fully present. What we’re not getting from the delivery side is an authentic invitation to engage.
en•gage•ment: noun, a formal agreement, i.e. to get married; an arrangement to do something at a specific time; the act of being engaged, i.e. “continued engagement in trade agreements”
Seems simple, right? Patient appears, asking for care. Clinical professionals deliver that care. Patient happy, clinicians happy, everybody wins. Oh, wait – did the doctor wash her hands before she started the physical exam? If the patient is aware of the importance of handwashing in preventing infection, and asks if the doctor lathered up and rinsed according to protocol, does that patient risk being labeled “difficult” or “aggressive”?
If so, so much for patient engagement. Given that the statistics on handwashing in healthcare settings aren’t at 100% (~ 90% for RNs, < 75% for attending MDs in a 2008 study at an Ohio hospital), clinical folks are as non-compliant as the patients they slap that label onto.
Then there’s the whole medical records dance. I got so sick of filling out health history forms that I said, out loud and online, that I’d get a barcode tattooed on my neck if it meant I never had to fill out another one. Even if you’ve been to a practice countless times before, you’ll likely have to fill one out EVERY. TIME. you have an office visit. Then, if you actually want to SEE your health history – the one contained in the electronic health record (EHR) system, hospital or office, or even the old school paper version – it’s like petitioning the Vatican for a dispensation: begging, more paperwork, and the forking over of cash money.
[Side note: I did tattoo my medical history on myself – not a barcode on my neck, but a QR code on my sternum. It’s visible online as my Twitter avatar– without the password that opens the page, of course.]
When you need medical care, you want to know what your treatment options are. Your doctors should be using a shared decision making approach, where they outline the options and possible outcomes of each one. They also should be able to provide you with COST impacts of the various options, but they don’t – usually because they can’t, since the array of insurance plans they take don’t make cost/price information easy to find.
We can thank what I call “stupid payer tricks” for the opacity of the money side of medical care delivery. Cost – the reimbursement numbers for physicians and facilities, along with the patient co-pay numbers – is considered “proprietary negotiated rate information” that’s the property of the insurance company. They dole it out in drips, only AFTER the bill has been submitted. Imagine buying a car, or a house, and signing the sales contract with no price on it, while being told that the bill will arrive in 60/90/120 days, and that’s what you’ll have to pay.
Hard to engage with something like what’s outlined above, isn’t it?
Add to all this the perception by the people who aren’t regular users of the healthcare system that healthcare is something that happens “over there, to sick people, but not to me,” and you have a complete lack of system literacy for healthy folks. Until, of course, they wind up at the hospital door with “a thing” – a car wreck, cancer – when they have to navigate new territory while sick, and in pain, without a map.
What’s needed here is not another earnest academic study from the health-system side, examining how to drive patient engagement. What we need is a grassroots-led effort, by expert patients who have created maps navigating the “new territory” mentioned above, to work with the doctors, nurses, administrators, data geeks, and scientists who recognize the need to flip the patient engagement paradigm from top down – Ivory Tower Rules – to bottom up: built with patients.
Back when I slaved in the depths of Hunter Thompson’s“shallow money trench,” we had a phrase we deployed whenever we thought the grownups were keeping us in the dark. We would say we’d been sent to Mushroom Land, where one is kept in the dark and fed sh*t, the better to keep us from making, or spotting, trouble.
source: HITconsultant.net
These were the very same grownups who, every four years like clockwork, would look at the calendar and say, “Holy crap, there’s a Presidential ELECTION this year?” But I digress.
The medical-industrial complex has, for eons, kept its customers (commonly called “patients”) in Mushroom Land pretty consistently. For a very long time, that was facilitated by a lack of access to scientific knowledge for the common human, but that started to shift in the 19th and 20th centuries, as public education rose across most parts of the globe. Of course, “math phobia” and “science denial” are still pernicious little devils, but the average person with an 8th grade literacy level and an internet connection can find out about just about anything.
I had the privilege of being awarded a seat at Dartmouth’s 2014 Summer Institute for Informed Patient Choice, orSIIPC14 for short, in late June 2014 (last week, as I write this). The purpose of the conference was to chew on topics and issues related to not keeping patients in the dark when it comes to making informed decisions about their health, their healthcare, and their relationships to the medical care teams they work with to gain or retain “best health.”
This event had some serious meat on its bones, both in reputational throw-weight of the presenters and breadth of stakeholder groups represented in the audience. Dartmouth itself is no stranger to uber-smart-ness, particularly in healthcare, given the work and thinking that emerges from Geisel School of Medicine and the Dartmouth-Hitchcock Medical Center (one of 23 Pioneer ACOs in the US).
I’m not going to walk you through the whole program, because who wants to read 15,000 words, really? What I will do is walk you through a very short list of the presentations that cast the longest memory shadow, for me at least, in the conference aftermath.
How I had not known of Wennberg’s work is a mystery, but it doesn’t need solving ‘cause I now not only know about it, I’m officially an evangelist for it. He’s one of the people behind the Dartmouth Atlas(if you follow that link, pack a lunch – it’s a glorious time-sink for healthcare geeks), and has participated in more thought-provoking and system-transforming research than pretty much anyone I’ve met in my health policy wonk travels to date. His presentation drilled in on what he calls the “Glover phenomenon,”referring to the research of James Alison Glover, a British physician who studied medical practice variation region to region in the UK, with some interesting results that essentially boil down to (my paraphrase) “everyone’s doing it, so I will, too.”
Dr. Wennberg’s talk was the perfect scene-set to kick off the conference, because his work, inspired by Glover’s, points up the price of keeping patients in the dark about why their medical care team is recommending any particular course of treatment for [whatever]. Simply “because I said so” – which was the prescriptive rule in medicine for … ever – is a really bad idea if you’re trying to reduce unnecessary treatments, control costs, or create a healthcare system that runs on scientific evidence, not patriarchy. Shared decision making requires that all participating in that decision have a grasp of all the facts, including possible outcomes.
“The care they [patients] need and no less, want and no more.”
That’s a quote from Dr. Mulley’s involvement with the Salzburg Global Seminarin 2012, and is a pretty good anchor for his message at SIIPC, which was titled “The Silent Epidemic of Misdiagnosis.” That misdiagnosis can come from misattribution of the patient’s outcome preferences (do doctors even ASK most of the time?), which then puts both patient and care team on a trip down the rabbit hole. This approach causes everything from unnecessary surgery to unwanted extraordinary measures at the end of life to who-knows-HOW-many unneeded pharmacological “interventions.”
One quote from Mulley’s talk really stands out for me: “Doctors talk about the science of medicine to preserve their authority and the art of medicine to preserve their autonomy.” Shifting that boulder will take some persistent pushback from patients who want to work with participatory medicine practitioners. (Alliteration-itis.) Click this link to read a paper by Dr. Mulley, Dr. Glyn Elwyn, and a colleague on why patient preferences matter.
I met Elliott Fisher at Health Datapalooza in DC in early June of this year, and sat pretty much at his feet (in the 2nd row) as he delivered the opening keynoteat that event. Since he’s the director of Dartmouth’s Institute for Health Policy & Clinical Practice, I knew he’d be presenting at SIIPC and looked forward to hearing what he had to say.
As an MD with deep experience working to build Dartmouth-Hitchcock’s Accountable Care Organization (ACO), Fisher has a 3D view of the healthcare delivery landscape. He rings all my favorite changes, particularly in the areas of cost and quality of care delivered to patients. My favorite slide from his deck said, simply, “No outcome, no income.” In the gold rush that US healthcare has been since … forever, now sucking up close to 20% of GDP – and making the defense lobby look like homeless people in the process – tying money to outcomes, and to the patient preferences that define those outcomes, seems downright revolutionary.
Since I am myself a revolutionary when it comes to pushing for healthcare system transformation, I’m thinking of Elliott Fisher as a brother from another mother, on this topic at least.
Keeping patients in the dark = REALLY. BAD. IDEA.
BUT … (and there are many buts in this story)
If the smart folks running the Dartmouth thinkiness on healthcare system transformation are smart enough to invite the wide panoply of players who attended this conference to listen, and to talk about, how that transformation might be driven … where’s some outcome there? Bueller, Bueller … anyone?
There was much conversation traffic on Twitter throughout the conference, anchored by the hashtag #SIIPC14 (clicking that link will take you to Symplur’s Healthcare Hashtag Project, where you can parse the SIIPC conversation). Much of the undertone of that conversation was “OK, so what’s going to be DONE here?” From the e-patient perspective, that’s a perpetually unanswered question at ALL healthcare related conferences, even our own.
As individuals, and even as groups (professional and consumer), we’re arrayed against what I call the K Street Mafia, who I called out during the Q&A after Elliott Fisher’s talk on the last day of the conference. I also said that silos where the greatest danger to the health of all mankind. Used to be missile silos that risked global destruction. Now it’s just silos of doctors, data geeks, revenue cycle management types, policy wallahs, software developers, patients, and a partridge in a pear tree. I said, “End the silos – can I get an AMEN?” To which the assemblage responded with a rousing “AMEN!” But … did it move the needle, any needle, at all?
Even though gatherings like SIIPC are dedicated to including the patient voice, the scales are not at all balanced when it comes to the power matrix in healthcare. As I said in along conversation on my Facebook wallin the aftermath of my trip to Dartmouth, “It is not lost on me that, in most of the rooms where I am invited to share my recommendations for system transformation, I’m paying my own way amongst a large cohort of well-dressed […] folks on expense accounts.”
This is IN NO WAY meant to snipe at the great folks who put on the Dartmouth conference, and who invited me to attend. I was delighted to be there, and am deeply grateful for the experience. I met some great people, and connected with some others that I already knew.
But … I’ve been doing this for a while now. When will the number 210,000 (the number of avoidable medical error deaths in the US annually) go back to being just another number? When will the cost of care stop being a game of Where’s Waldo? When will expert patients be seen as equals when it comes to getting paid for the work we do to drive system transformation?
The plethora of horror stories that emerge from the “medical professional” ranks about their own terrible experiences when they’re on the other end of the scalpel from their usual position hasn’t made a dent in the stone wall that is the medical-industrial complex’s change management rodeo.
We all have to work on this. The outcome is still uncertain, because institutionally, healthcare seems to be dedicated to “business as usual” in spite of all efforts to shift that thinking. We – the change agents – are arrayed against some powerful forces with very deep pockets.
Are we stuck in a bad remake of “Groundhog Day”? Only time will tell … but this e-patient is very impatient. She’s been doing this for more than 20 years, and she hasn’t seen much “transformation” yet.
Most of the people I meet in my voyages ’round healthcare system transformation, grassroots edition, arrived at the portal of #epatient via a trip through the medical-industrial complex. Either they, or someone they cared for, wound up getting “a thing” – cancer, Parkinson’s, multiple sclerosis, player to be named later – and they found themselves inside the medical care delivery system, bewildered, and looking for answers.
In short, most – not all, by any means, but most – are over 40.
Imagine my surprise, and delight, when I was sent a report on a survey conducted with 385 randomly selected patients across the US*, with most of the responses coming from 18 to 35 year old millennials (people born 1982 and after). The survey asked them their opinions on shared decision making, open notes, and shared medical visits, three new medical practice models that are rising in adoption.
Here’s the context of the survey questions:
Shared decision-making involves the doctor and patient evaluating multiple treatment options and deciding together on the best course of action.
Open notes is a policy allowing patients to view the medical notes doctors take about them during visits, which includes accessing those notes from home.
Shared medical appointments, or “group visits,” involve attending an extended (60- to 90-minute) medical appointment with 10 to 15 other patients and one or more physicians.
The survey results make me think we might finally be reaching a tipping point toward positive change, given that a big majority (76%) of respondents said they were extremely or very likely to use shared decision making. Over 60% were extremely or very likely to welcome open notes:
The demographics of the survey respondents was a pretty representative sample as far as chronic conditions go:
One surprise in the demographic detail was that more men responded than women. Given that, historically at least, women have been more likely to use the medical care system (annual Pap smears, reproductive health visits) than men, the fact that men outnumbered women in this gives me even more hope. Are dudes getting it? “It” being that their health is their responsibility, and that a relationship with a good primary care provider is a good life plan.
To recap, millennials want shared decision making and open notes. Shared/group appointments, not so much. I think that the shared/group appointment approach would be best deployed in “building health literacy” settings: condition-specific education on diabetes, for example. I also think that telemedicine needs its own survey, given that practice model could be used both real-time or asynchronously via secure video links.
The millennial generation has grown up with digital tools and instant access to information. I seriously doubt that they’re going to be willing to suffer the slings and arrows of outrageous wait times, or outrageous balance billing, when they seek medical care. Hope for real system transformation may have crested the distant horizon, and be riding toward us. May its speed be supersonic.
The World Health Organization (WHO) invited yours truly to its First Global Experts’ Consultation in service of building a WHO framework for patient and family engagement. This is all due to my part in the ongoing anvil chorus that is the new Patient & Family Engagement Roadmap, developed by a group of dedicated folks from all parts of the healthcare compass over the last couple years, with funding from the Gordon & Betty Moore Foundation.
I spent just over two days in Geneva, most of the time head-down in discussions about how the global health system – a patchwork of services delivered by an even patchwork-ier cadre of healthcare delivery systems – can better serve the needs of the people/patients who seek medical care and health information from them.
This post will not attempt to report everything I saw/heard/thought/felt in that jam-packed 16 hours of ideas and outlooks. What I’ll share is my perspective on the challenges, the opportunities, the pitfalls, and the hopes that – in my view, at least – emerged during that lightning round of global spitballing.
CHALLENGES
There’s an old joke that asks, “What’s an elephant?” The answer: “A mouse designed by a government committee.”
That’s the risk, and challenge, to any attempt to build a definable set of standards for a human effort. Education, transportation, trade, infrastructure, communication, medicine – all require some sort of standardization to make them useful to more than one or two people huddled over a campfire. A study of history will show that as much as we humans are great idea generators, trying to get the rest of the tribe to adopt our new idea isn’t easy.
The father of quantum mechanics, Max Planck, said it best: “A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it.” To paraphrase: Science advances one funeral at a time.
Medicine, which has been practiced for millennia by magical beings initiated into secrets of “science” that could not be understood by the common human, has only become understandable to the average Joe and/or Jane as public education has become available across the globe. Public education still isn’t available everywhere, and the character and content of that education can be complicated by cultural views of science, of the education of women, and other factors that impact access to information.
So the challenges I see here are two-fold:
Calcified thinking in power structures, both scientific and political.
Lack of science education and information access in the wider population.
That’s true in developed nations – just witness the “science denial” movement in the US that stubbornly insists on not being confused with facts on issues like climate change or human reproduction – as well as in emerging nations that are still building basic infrastructure.
OPPORTUNITIES
Well, let’s start with who was in the WHO-room. Clinicians, policy wonks, and healthcare advocates from Uganda, India, Canada, Ecuador, Pakistan, Saudi Arabia, Belgium, Ireland, the UK, the US, Switzerland, the Netherlands, Thailand, Australia, China, and Malaysia, along with a wide array of WHO folks from their Geneva HQ as well as a robust representation of their Western Pacific Region Office (WPRO). WHO’s Envoy for Patient Safety Sir Liam Donaldson(that link is to his Twitter feed, which I highly recommend) was actively engaged in every part of the discussion over the two days, and I was deeply encouraged by his clear insights into the issues we’re all wrestling with in transforming the global healthcare system.
The story that had the biggest impact on me was the one told by Dr. Jonás Gonseth, head of Hospital de Especialidades in Guayaquil, Ecuador. His experience was one that I think spotlights the core problem: lack of trust in the care delivery system by the people that system purportedly serves. I wish I had a link to the video he shared, which clearly showed the lack of trust that the Ecuadoran people had in their healthcare system. Demonstrations outside the hospital, intercut with a number of clips that included a patient on a gurney being rolled toward the hospital door who got dumped on his head when the gurney tipped over as the dweeb hauling it couldn’t figure out how to get it over a curb … you get the picture.
Dr. Gonseth was asked (begged?) by the President of Ecuador to tackle the mess that was the Guayaquil Hospital de Especialidades. In just over two years, he’s worked what could be called miraculous change in quality improvement and patient safety, largely by advocating for community social participation in that work, and for patient empowerment. He’s transformed the culture inside the hospital, and the level of community trust in the care delivered by that hospital. The money quote: “It was such a disaster we had nothing to lose [by involving patients].”
What that story told me is that grassroots frustration with healthcare systems is a global issue, one that was made clear by all the from-the-ground presentations over the two days. That leads me to the opportunities here, which are shared by both developed and emerging countries:
“Start where you are. Use what you have. Do what you can.” That quote from Arthur Ashe makes it clear that any – ALL – of us can work on healthcare system transformation. So let’s get this party started.
Transformation does not happen from the top down. There does need to be a leader, but a successful leader will more likely come from outside the system needing the transformation.
That calcified-thinking challenge I mentioned above presents a solid opportunity to those of us on the ground, working to transform the system. Designing from the outside in is a software development approach that focuses on satisfying the needs of the end user. Healthcare systems *must* look at system transformation from that perspective: start with the people you’re serving, not with the folks running the hospital/professional society/medical association. The people being served – THE PATIENTS – are the end-user stakeholders.
PITFALLS
There’s much inertia confronting transformation of a massive human system like healthcare delivery. It’s exhausting if you look at it as a “system,” but since it is a system, any action has to be considered in the context of what sort of dominoes – or dynamite – that action might trigger. Plus, attempts at transforming bureaucratic process lead to what I’m going to call Donaldson’s Dictum (in honor of Sir Liam Donaldson, who said it): “Ability to simplify bureaucratic complexity draws heavy fire from the bureaucrats who create that complexity.”
And then there’s the elephant in every room: the money. Whatever the economic basis is for the healthcare delivery system in question, getting quality improvement and patient safety into the budget is a daunting task. Dr. Jonás Gonseth effected his hospital transformation in Ecuador without any increase in budget, but I wonder how much heavy lifting he had to do to sell his ideas to the bureaucrats? Since he’d been asked by the country’s President to take charge and fix a major mess, that might have gotten him through the first week. But transformation at this level takes months and years, so figuring out where the money’s gon’ come from is critically important.
So, in short:
Is there a budget for real system transformation?
Is there enough political will to allow that transformation to occur?
HOPES
When it comes to complex systems thinking, I’m a simple creature. I believe that the more complex the system you’re looking at gets, the more you have to go right down to the molecular level to regain perspective.
If you’re trying to end a disease like polio, you have to start where Jonas Salk did: with the virus itself. If you’re trying to create a healthcare system that delivers human health, you have to start with … the people who are seeking health care. June Boulger, Ireland’s National Lead for Patient and Public Involvement in Healthcare, said the overarching message of her work is “people helping people.”
When I took the mic to make a comment on Monday afternoon, I told everyone in the room to run right back to the ground level whenever they got too “system”-y in their thinking or their approach to quality improvement, delivery improvement, and/or patient safety.
Design from the outside in, begin with the end in mind, “start where you are, use what you have, do what you can,” lather, rinse, repeat.
That’s my entire philosophy of healthcare system transformation in one sentence.
As the author of a rabble-rousing call to action, with a heavy dose of humor, on managing medical care called Cancer for Christmas, I have some street cred on both cancer and on dealing with tough personal health conversations over a Christmas standing rib roast dinner.
My hair has been on fire since I heard that Myriad Genetics had patented genes, back in the previous millennium. First, how in the pluperfect f^ck is a naturally-occurring part of the human body – microscopic or not – patentable?? Second, why is a commercial enterprise allowed to dictate scientific research at a university? If they’re funding it … maybe. If they’re trying to prevent it from moving forward? What. The. F^CK? I expect crass commercialism at Walmart. When it comes to cancer research, a primary profiteering motive should be a capital offense. Yep, off with their heads, baby.
It recently came to my attention, thanks to my buddy BraveBosom‘s tip-off …
… that the trolls at Myriad Genetics are up to newer, stinkier tricks: “helping” us make cancer a holiday centerpiece!
Hey, Myriad, here’s a tip: WE DON’T TRUST YOU. You’re trolls. Support from you? I’d sooner eat dinner with Hannibal Lecter.
If you haven’t heard of Myriad Genetics, here’s the Cliff’s Notes version:
Founded in Salt Lake City in 1992 by, among other names, a Nobel Prize winner in chemistry, Walter Gilbert
In 1997, Myriad is granted a patent on BRCA1 (one of two genes that indicate high risk of breast and ovarian cancer)
In 1998, Myriad is granted a patent on BRCA2 (2nd of two breast cancer risk genes)
BRCAnalysis, the company’s genetic test for breast cancer risk, costs $4,000 (you can get an entire genomic sequence for less than that – the Myriad test only looks at two genes!)
Myriad starts to press legal action against other genetics companies, alleging trade secrets infringement (pre-SupCo-decision story here, post-decision story here)
With me so far? OK.
Yo, MySupport360 – your “support” would cost me how much, exactly? My liver, with some fava beans? The sticker price of an Escalade? The entire contents of my 401(k)? Given your track record for bottom-lining other people’s health risks, why the French-pressed f^ck should we trust you on anything, much less guiding health-related conversations with our families?
Your invitation to “talk about genetic testing” with our families over Christmas dinner … hell, we’d HAVE to serve up a bottomless flagon of nice Chianti to get through it, given that the “talk” (following your paradigm) would wind up with us wanting to clap a restraint mask on the faces of everyone behind MySupport360. ‘Cause sure as shootin’ you’d be picking our pockets all the way.
The firehose of amazeballs ideas and connections that was Stanford MedicineXis now over two weeks back in my rear-view mirror. That does not mean that my head has not been on fire ever since, chewing on all the data that got packed into my cranium in those three days. If you want to read a recap of the joyful noise that was those days, it’s over on MightyCasey.com.
A forest fire between my ears has flared up with this thought: all the “big idea” thinking that happens when smart people gather to talk the future of healthcare is terrific. How can that be translated, today, into actual care improvement for the average human? Not just ePatients, but just-plain-folks? How can we start little centers of excellence in a free clinic for undocumented workers in the South Bronx, or in a village in AIDS-ravaged sub-Saharan Africa?
Is there an app for THAT?
Image credit: HuffingtonPost.com
I often feel myself at the crossroads of Possible and Are You F***ing Nuts. In other words, I dream of smartphone apps that could help a little boy in Ghana avoid getting malaria. I could lose an hour wondering how an app might help a little girl in Pakistan avoid a forced marriage at 12. As I type this, I’m thinking of how the kids in the public housing projects of the small city where I live could really use some how-to-manage-your-healthcare apps they’d be able to relate to. And the smartphones to go with them, of course.
Is there an app for THAT?
The grass, and its roots, are where we all stand. Healthcare, like charity, needs to begin at home. How do we help that happen? How do we empower children, and their parents, to understand how to interact with the healthcare system when so many of them are overwhelmed by just ensuring another 24 hours of survival?
Is there an app for THAT?
Here’s what I would LOVE to see at MedX 2014 (at which I firmly intend to be in attendance): real-world, right-now ideas for putting empowerment tools in the hands of not only the privileged, and the connected, but also into the hands of children across the globe. They’re more than our future … they’re our only hope.
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.
(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.
Amir Dan Rubin – the CEO of Stanford Hospital & Clinics, his master class on quality improvement will inform my hospital-med journo work for years to come
Dr. Marc Katz(I hadda go to Silicon Valley to meet a terrific doc who practices down the street from me – go figure)
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?
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.
Spending one’s days on the advocacy beat out here on the Wild Wild Web can be hugely rewarding. Like, say, when you start 
I spent just over two days in Geneva, most of the time head-down in discussions about how the global health system – a patchwork of services delivered by an even patchwork-ier cadre of healthcare delivery systems – can better serve the needs of the people/patients who seek medical care and health information from them.
When it comes to complex systems thinking, I’m a simple creature. I believe that the more complex the system you’re looking at gets, the more you have to go right down to the molecular level to regain perspective.
