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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?

Apr 21 2015

Security vs. access: threading the needle

By healthcare industry, media commentary, politics, technology

The annual big-data party known as the HIMSS conference played out in Chicago – and online – last week. During the event, one of the central issues that arose in the social media conversation under the #HIMSS15 tag involved the one facing patients trying to access their health records, either digitally or on old-school paper: the security/access conundrum. Data that’s accessible to a patient could also wind up accessible to Romanian hackers (you’ve heard me on this topic before), and efforts at making patient data “secure” mean that data is often secure from the patient whose data it is. Patients give their forehead some serious keyboard every day over that one.

The folks over at Software Advice released a report on HIPAA breaches on March 12*, which I only caught up with when I returned from my Mighty Mouth 2015 Tour of Info-Sec and Right Care. Full disclosure, I’m quoted in the report, but that’s not why I’m talking about it here.

Here’s my biggest takeaway from the piece: 54% of the patients surveyed for the report would consider ditching a healthcare provider if that provider had a breach.

Most Patients Would Switch Providers After Breach

pie chart of likelihood of switching providers

 

Key findings in the report:

  1. Forty-five percent of patients are “moderately” or “very concerned” about a security breach involving their personal health information.
  2. Nearly one-quarter of patients (21 percent) withhold personal health information from their doctors due to data security concerns.
  3. Only 8 percent of patients “always” read doctors’ privacy and security policies before signing them, and just 10 percent are “very confident” they understand them.
  4. A majority of patients (54 percent) are “moderately” or “very likely” to change doctors as a result of a patient data breach.
  5. Patients are most likely to change doctors if their medical staff caused a data security breach, and least likely to change doctors if hackers were responsible.

Given the rising number of breach reports hitting headlines, including the massive one that impacted 80 million Anthem customers (possibly including me – not 100% confirmed yet) in January, this is not an issue that will go away. From the expert patient perspective, this is doubly frustrating, because the first thing that happens after a breach headline is the throttling of patient access to our records. Additional sign-on protocols, tighter credentialing, or a full-on “no more digital access” from smaller providers, all laid at the door of “because HIPAA.”

This doesn’t just affect access, it can have an impact on care. Here are the report’s stats on patients withholding information from their medical providers due to breach concerns:

Security Concerns Can Stifle Communication With Doctor

pie chart on patient withholding info

Quoting from the report:

“Health care lawyer and blogger David Harlow is also troubled by our results. Doctors need to get a full picture of a patient’s health history, he explains. If they don’t, the effectiveness of treatment could suffer—or worse, the patient could be harmed. For example, if a doctor is not told about a patient’s current prescriptions, the doctor could inadvertently prescribe a second medication that has adverse interactions with the first drug.

“That’s an invitation for disaster,” Harlow says. “It means we have a lot of work to do to convince people of the safety and importance of sharing information with physicians.”

My thinking on this topic can be summed up in the closing quote from the report, from yours truly:

“Concerns over digital privacy and security have obscured the real conversation, which is, ‘How can we make health care more accessible, frictionless and safe with the data we collect about patients?’”

*Source: Practice Management systems consultancy Software Advice

Apr 13 2015

World on fire. Film at 11.

By healthcare industry, media commentary, politics, technology

I wasn’t lucky enough to get a press pass, or a scholarship, to HIMSS15 this year. Given events of the last few days, I’m really sorry I can’t be on the ground in Chicago for what feels like a grassroots revolt brewing in protest of the Centers for Medicare and Medicaid Services (CMS) dropping an announcement, on Friday late afternoon, that they were thinking of gutting the rules for patient access to their own records under the “Meaningful Use” criteria of healthcare reform. You know, the one where we spent something like $6B of taxpayer money. Which was supposed to make care easier, safer, cheaper.

There are phases and stages of Meaningful Use. We’re in MU2 right now. Originally, by the end of the MU2 period (running through 2020), a practice or facility had to demonstrate that 5% of the people/patients cared for in that practice or facility viewed, downloaded, or transmitted their personal health information (PHI) to a 3rd party. That was the criteria for a healthcare provider seeking stimulus $$ for EHR technology deployment [updating: and Medicare reimbursement].

Here’s the “new” rule (clue train: instead of 5%, it’s 1. No, not 1%, one patient) being proposed:

mu2-gutting

I know, right? Friday afternoon, everyone in the industry is heading to Chicago for HIMSS15, who’ll care? Sorry, CMS, but you are totally busted. Here’s data access rights activist Regina Holliday, who’s at HIMSS and whose hair is now on fire.

Speaking of “hair on fire” … so’s mine.

Seems like the Empire is trying to strike back. Or the Capitol (the big-money healthcare industry players who drop money on K Street lobbyists like snowflakes in Boston in the winter of 2014) thinks it’s run over all the Districts (patients, caregivers, families) and has little to fear from our powerlessness. I think they’re wrong. Dead wrong. And they’re about to find out just *how* wrong. Expert, activist patients, along with savvy clinical folks whose hearts are truly in their work, are now assembled in District 13.

My take can be summed up in this image [updated on Tuesday, April 14]:

bluebutton mockingjay mashup image

We are coming for your silos. Because it’s OUR data, and OUR lives.

Mar 25 2015

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

By healthcare industry, politics, technology

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

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

HIMSS Patient Engagement Summit

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

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

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

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

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

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

 

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

HIMSS Privacy + Security Forum

 

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

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

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

 

Lown Institute RightCare conference

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

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

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

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

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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

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

Feb 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

Feb 18 2015

EHR technology: Match.com without a happy ending?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Feb 04 2015

Advocacy, trolls, and threats – oh, my!

By e-patients, healthcare industry, participatory medicine

womens-trollsSpending 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.

This is not a unique problem for patient advocates – this happens to anyone who speaks up in service of changing a cultural norm. Just ask MLK, who was trolled by none other than the FBI, who told him he should just kill himself. Imagine the fun the FBI could have had on Facebook, if MLK vs. FBI on Facebook had been a possible-thing in 1964.

It can happen in the e-patient game, too, as shown in the Bill Keller/Emma Gilbey Keller/Lisa Bonachek Adams/NY Times dustup over whether or not patient blogs, particularly those about cancer, are TMI (Too Much Information – translation: “ew, gross”).

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.

Advocacy, trolls, and threats – oh, my!
Jan 27 2015

Does the doctor-patient relationship need marriage counseling?

By healthcare industry

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

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

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

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

Can this marriage be saved?

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

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

Jan 15 2015

Patient Engagement. You’re doing it wrong.

By healthcare industry

frustrated patient with word balloon

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.

Let patients help.

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