Report from the front lines: Technology, engagement, and killing paternalism
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 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 mythical beast. 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:
“Patient engagement is nourishing healthcare”-@DrKyraBobinet #Engage4Health
— Simone (@MyrieTash) February 9, 2015
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 William Gibson said in the December 4, 2003 edition of The Economist, “The future is here, it’s just not evenly distributed.”
I should be able to, via dashboard radio button, select EHRs to share my #qself data with. YES, REALLY. #engage4health — Casey Quinlan (@MightyCasey) February 9, 2015
“The patient value needs to be recognized and compensated.” @kymlmartin #Engage4Health— Tom Sullivan (@SullyHIT) February 10, 2015
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:
This is going to be my favorite slide for this meeting. #Engage4Health pic.twitter.com/Xi2V3OC8DP — Kathy Nieder MD (@docnieder) February 9, 2015
HIMSS Privacy + Security Forum
Healthcare doesn’t have to reinvent the #infosec wheel. Finance/banking, another high-reg/high-risk industry, is great model. #hitprivacy — Casey Quinlan (@MightyCasey) March 5, 2015
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.
De-identification is a quaint notion of the past. — @johnemattison #HITprivacy— Tom Sullivan (@SullyHIT) March 6, 2015
“#HIPAA has become a magic incantation.” — @MightyCasey #HITprivacy— Tom Sullivan (@SullyHIT) March 7, 2015
“We killed healthcare in the US when we started to mass produce the office visit.” — @CareSync CEO @travislbond#HITprivacy — Tom Sullivan (@SullyHIT) March 7, 2015
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 had a QR code linked to my health history tattooed on my sternum …
I for one threw privacy overboard like a dead cat by planting this on my chest (PW protected, tho) pic.twitter.com/kH1BZLzzhY #hcsmca— Casey Quinlan (@MightyCasey) August 6, 2014
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 was awarded 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:
Excited to see a bunch of #AF4Q faces at #Lown2015! A multi-faceted, multi-stakeholder movement toward the #rightcare — Deborah Roseman (@roseperson) March 9, 2015
“If a little chemo is good, more must be better” tragic tale of unproven, ineffective BrCa Rx related by @ShannonBrownlee at #Lown2015 — Kenny Lin, MD, MPH (@kennylinafp) March 9, 2015
Shannon Brownlee: “The medical system today helps many, but harms too many “#LOWN2015 — Pink Ribbon Blues (@PinkRibbonBlues) March 9, 2015
Medical industrial complex designed perfectly as revenue generator. Designed HORRIBLY for delivery of effective right-care. #lown2015 — Casey Quinlan (@MightyCasey) March 9, 2015
On the other side is the recognition of the mission and purpose of medicine, which is, at its root, to serve. #Lown2015 — Lown Institute (@lowninstitute) March 9, 2015
“American people hire lobbyists to represent their interests in Washington.” Said no one, ever. (Except @TheOnion) #lown2015 — Casey Quinlan (@MightyCasey) March 9, 2015
Jeff Kane: “Cancer is like a bomb going off in the living room.” #lown2015 cc: @BC_Consortium — Pink Ribbon Blues (@PinkRibbonBlues) March 9, 2015
“I can cure homelessness. You just house them and it’s cured. Completely curable problem.” Mitch Katz from LA County #Lown2015 — Chris Moriates (@ChrisMoriates) March 9, 2015
“I am still trapped in a system whose main interest is diagnosis and treatment. But my interest is health.” -Mitch Katz #Lown2015 — Lown Institute (@lowninstitute) March 9, 2015
“Ethical erosion” = med students having their altruism surgically removed via medical school. #lown2015 — Casey Quinlan (@MightyCasey) March 9, 2015
Don’t just describe the problem. Don’t get stuck on the negative. Ask what to do to make things better? ~Harlan Krumholz @hmkyale #lown2015 — Casey Quinlan (@MightyCasey) March 10, 2015
Harlan Krumholz demolishes the informed consent sham. Resonates: this was the crux of my dad’s MRSA demise. Fresh tears. #Lown2015 — BartWindrum (@BartWindrum) March 10, 2015
Peter Drier’s remarkable engagement in his care/cost negotiation underscores that vulnerable patients don’t have that wherewithal #Lown2015 — Deborah Roseman (@roseperson) March 10, 2015
Patty Gabow: in addition to #rightcare, we need #rightprice. #amen #hcpt #Lown2015 — Deborah Roseman (@roseperson) March 10, 2015
Public needs to express collective voice for new #patient bill of rights. Right to info about cost & quality. #lown2015 #Time4Change — Harlan Krumholz (@hmkyale) March 10, 2015
Only 7% of those with terminal illness in CA talked to their doctor about end of life. Over 70% wanted to. #Lown2015 — Emma Sandoe (@emma_sandoe) March 10, 2015
imagine if the trillion excess in health care spending went to social determinants of health. #Lown2015 — Janice LynchSchuster (@jlschuster827) March 11, 2015
“We will never have a healthy society if we don’t address the poverty and racial disparities that drive our system.” -Steve Nissen #Lown2015 — Lown Institute (@lowninstitute) March 11, 2015
Nissen challenges value of CME– miseducation, paid for by those who stand to profit. ROI for companies, not for care. #Lown2015 — Deborah Roseman (@roseperson) March 11, 2015
Nissen: Millions of dollars flow to physicians from pharma/device companies. “In any other world, this would be called bribes.” #Lown2015 — John Mandrola, MD (@drjohnm) March 11, 2015
“Counteract the hopelessness that sustains the status quo.” -@SEIU_Eliseo #Lown2015 — Lown Institute (@lowninstitute) March 11, 2015
This is key!! ‘Know when to quit’. Will be a BIG challenge to #RIghtcare movement. How measured? #lown2015 — Gregg Masters (@2healthguru) March 11, 2015
And, because it just ain’t a movement unless this gets thrown down:
Power to the M*****F****** people, yo! Seriously, did I really *have* to say it? Make healthcare work FROM. THE. GROUND. UP. #lown2015 — Casey Quinlan (@MightyCasey) March 11, 2015
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 …
image credit: HBO [text added by Mighty Casey Media]
Originally published at mightycasey.com.
