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health care reform

#epatient – Are Millennials Born That Way?

November 17, 2014 by Mighty Casey 1 Comment

survey results bar graph

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:

Millennial PM Likelihood 4

 

The demographics of the survey respondents was a pretty representative sample as far as chronic conditions go:

Millennial PM Chronic Disease

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.

Millennial PM Gender

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.

*Source: Practice Management systems consultancy Software Advice

Filed Under: Business, Find the funny, Healthcare, Media commentary, Social media, Technology Tagged With: #epatient, casey quinlan, e-patients, health care, health care reform, health insurance, Healthcare, healthcare costs, mighty casey media, participatory medicine, shared decision making, society for participatory medicine, technology

Keeping Patients in the Dark

July 2, 2014 by Mighty Casey 12 Comments

patient engagement cartoon

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.

patient engagement cartoon
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, or SIIPC14 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).

The conference was put together by Glyn Elwyn, an MD who is on the faculty at Dartmouth’s Center for Health Care Delivery Science, and its Institute for Health Policy and Clinical Practice (mouthful), and Ben Moulton, who is one of the leaders of the Informed Medical Decisions Foundation and on the faculty at Harvard Medical School teaching health law in clinical practice.

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.

Dr. Jack Wennberg

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.

Keeping patients in the dark = REALLY. BAD. IDEA.

Dr. Al Mulley

“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 Seminar in 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.

Keeping patients in the dark = REALLY. BAD. IDEA.

Dr. Elliott Fisher

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 keynote at 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 a long conversation on my Facebook wall in 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.

 

Filed Under: Business, Find the funny, Healthcare, Politics, Social media, Technology Tagged With: Dartmouth, e-patients, health care, health care reform, health insurance, Healthcare, healthcare costs, mighty casey media, politics, SIIPC14, Social media, Storytelling

Cost and Price and Cost, oh my!

June 5, 2014 by Mighty Casey Leave a Comment

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

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

 


Telling costs from costs from charges

Via: The Advisory Board Company

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

Filed Under: Business, Find the funny, Healthcare, Storytelling, Technology Tagged With: Business, e-patients, health care, health care reform, health insurance, Healthcare, healthcare costs, media, mighty casey media, politics, Social media, Storytelling

Healthcare.gov and me: I win!

November 18, 2013 by Mighty Casey 2 Comments

healthcare.gov error message image

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

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

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

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

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

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

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

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

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

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

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

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

Bottom line? I win.

Filed Under: Find the funny, Healthcare, Media commentary, Politics, Technology Tagged With: Business, casey quinlan, disruptive women in health care, e-patients, health care, health care reform, health insurance, Healthcare, healthcare costs, mighty casey media, news, politics, technology

“How much is that?” is a critical question in healthcare

November 4, 2013 by Mighty Casey Leave a Comment

caduceus dollar sign scale

This story from PBS Newshour clearly shows how important it is to ask questions, and shop around, when it comes to prescription drug prices.

Think a generic drug guarantees a lower price? Not so much. Watch this story, and learn how the same generic drug can cost anywhere from $11 to $455. The best way to get the lowest price? The same way you shop for shoes, or appliances: research online, ask local retailers, and make an informed decision.

Filed Under: Healthcare, Politics, Storytelling Tagged With: #hcpt, #howmuchisthat, cancer, casey quinlan, drug costs, drug prices, e-patients, h, health care, health care reform, health insurance, Healthcare, healthcare costs, pharma, politics

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

October 10, 2013 by Mighty Casey 1 Comment

medicinex regina holliday painting

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. Here’s Sara on the main stage:

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? Not so much. Here’s the first-look video of the session via the MedX YouTube channel:

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):

  • Jody Schoger
  • Dr. Alan Greene
  • Thomas Lee and Audun Utengen, the men behind Symplur
  • Gilles Frydman and Roni Zeiger of Smart Patients
  • Dr. Bryan Vartabedian
  • Katie McCurdy (who’s written a great MedX post you can read here)
  • Dr. Rafael Grossmann
  • Carla Berg Nelson
  • Dr. Deanna Attai
  • Dr. Leslie Kernisan

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:

  • Joe Riffe
  • Emily Bradley (Emily wrote a penetrating piece on how chronic pain affected her MedX experience, read it here)
  • Erin Moore
  • Liza Bernstein
  • Spartacus. No, wait, CHRIS SNIDER. (I think Chris will get the joke there … )
  • 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)
  • Terri Wingham
  • Dr. Berti Meskó
  • Brett Alder
  • Dr. Peggy Polaneczky
  • Emily Kramer-Golinkoff
  • Dr. Christian Assad
  • Denise Silber

And the amazeballs of awesome that is Zöe Chu:

zoe chu photo

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?

Filed Under: Find the funny, Healthcare, Social media, Storytelling, Technology Tagged With: "Cancer for Christmas", #medx, casey quinlan, comedy, disruptive women in health care, e-patients, health care, health care reform, Healthcare, healthcare costs, humor, mighty casey media, participatory medicine, Social media, Stanford Medicine X, technology

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