10 Ways the Patient Voice Institute is Shaking Things Up

Launching PVI at HxRefactored

So excited! I've been away from this blog for several months because I've been collaborating with some amazing patient advocates to create the Patient Voice Institute (PVI).

In my last post here on Islands of Excellence, I lamented the lack of an over-arching organization that embraces and supports the work, voices, and best practices of patient advocacy groups. Diane Stollenwerk, a brilliant operations and organizational professional with deep understanding, experience and passion for quality health care, reached out to me after reading the post. We asked those dangerous questions, "if not now, then when? And if not us, then who?" And we were off to the races. (This post also appears on the PVI blog.)

At the HxRefactored conference in NYC last month, I was given an opportunity to get up on stage and introduce the non-profit Patient Voice Institute. Though I’d been in front of cameras for years as a news  anchor, my stomach was in knots. For months, our small operations team had invested our time, heart and soul into building this vision: a first-of-its-kind training, matchmaking and advocacy organization, created and driven by patients themselves, to achieve more patient-centered health care.

You might well ask why, with the excellent work of the Partnership for Patients, the IPFCC, Planetree, IHI, the CU Safe Patient Project, the Center for Advancing Health, Consumers Advancing Patient Safety, and other groups formed to address patient and consumer issues (too many to mention), we’d need one more “patient engagement” group.
Well, for one: at the center of health care, patients and families – with all their accumulated experience and wisdom-- remain way underutilized in fixing what ails health care.

Since then it’s been a bit of a mad scramble to keep up, as patients have begun to sign up with PVI and tell their stories, organizations inquire about speakers, and like-minded groups invite alliances.
And second: there is no overarching organization formed by patients themselves to address the full array of patient perspectives, based on research with patients.
It’s not for lack of candidates. Mention in any conversation (as I do when asked) that your work involves helping people have better medical experiences, and prepare yourself: everybody will start telling you a story about their mother, brother or friend. Sometimes these stories inspire; too often, they hurt to hear,let alone experience first hand.
It’s not for lack of passion. When you have a life-changing “medical awakening”, like losing a child, or beating a fatal cancer diagnosis, nearly dying of flesh-eating disease, or all but drowning in complex medical forms and bills, it triggers in some of us an unstoppable mission to share what we learned to help others.
It’s not for lack of effort: a dedicated number of us are out there individually every day, on panels, at podiums, on webinars, in conference rooms and board rooms—wherever we’re invited to have a seat at the table.
What, then? I’d say that “a seat at the table” isn’t enough, and too many of those chairs where patients should be sitting, still go empty. No matter which side of the bed rail you’re on, if you want health care to improve, the lack of meaningful involvement by patients in all aspects of health care is a big problem.
Here are ways the Patient Voice Institute intends to help solve it:

1. Preaching outside the chorus. Too much of the conversation about improving healthcare happens in the “hallowed halls” of healthcare conferences and policy meetings. With the tools of social media, and outreach through initiatives involving YouTube, contests and “Razzie” awards, PVI’s approach is to embrace everyday citizens (patients) in novel ways to care more about health care, talk about it with friends and family, and make healthier living more of a team sport.
2. A speaker and referral service The Patient Voice Speaker’s Bureau has an “A-team” of compelling speakers and consultants (a list that’s growing as I write this), offering authentic patient perspectives and research-based principles, referrals based on topic or tone, and an easy way to find them.
3. Consistency. As individual patients, we bring our authentic story and its lessons; as members of the PVI community we also weave shared, research-based principles into those experiences, giving us greater depth and impact as improvement partners.
4. Readiness. A harmed patient or family member can be so raw emotionally they can’t help but use a speaking opportunity to vent. (Knowing some of their stories, it’s hard to blame them.) But ultimately the audience (not directly involved in the case) can feel shamed and blamed. PVI works with patients and family members to help them use their story in ways that create effective climates for learning (see # 4, below).
5. Clarity of values. PVI embraces partnership, inclusion, collaboration and excellence. These “family values” guide our path and our community-building decisions, and how we approach our work with everyone.
6. Training. The more compelling and convincing we are in our presentations, and the more each of us understands and can speak to the full range of issues confronting all patients and providers, the more effective we can be.
7. Organization, infrastructure, and a home. Many patient groups are disease-specific, or focus on safety, partnership, data, dignity and respect, or another critical topic. PVI unites these themes under one umbrella, providing a platform for everyone to amplify their best practices. We invite all patients and families to join our community at any level of engagement.
8. Diverse but unified leadership. PVI’s Senior Advisors are among the nation’s most respected and successful patient voices. Each is vastly different in style, approach and story. But each signed on to PVI knowing that by working together we can achieve more than any could do alone.
9. Resources. Some newly activated patients seek simple on-line tools; others need coaching to more firmly establish their value as improvement partners or support such as stipends to attend key conferences or events. PVI intends to provide a full spectrum of this kind of support.
10. Self-reliance. As a group, patients do not yet have the “market power” that has driven culture change in other industries. PVI is building the knowledge, credibility, and coordinated action to create equal power for patients in the healthcare market. We act on the belief that our best hope is to look in the mirror and create the change we want to see.

Not all these pieces are in place yet, but you can help get us there. The Patient Voice Institute community needs your ideas, feedback, contributions (stories, referrals, funding), Tweets, blog posts and other social media love. Tell a friend. Get involved with us. Together we can ensure patient voices help fuel the emergence a more holistic, functional and affordable health care system—one we’ll be proud to pass along to our children.
Have you had an experience, a “medical awakening” others can learn from? What did you learn? What do you want others to know? What would you do differently? The Patient Voice Institute invites you to tell your story, and help create a new day in health care. Email us at info@patientvoiceinstitute.org. Follow us on Facebook and Twitter.

The Gift of Patient Advocates

When you purchased holiday gifts online this season, did you check customer reviews before you bought? Of course you did. How wonderful to have insights from customers with experience!

For those wondering what “patient advocates” do, it’s that. Share insights for the patients that come after them, in hopes of helping them have a good experience, and avoid medical harm. (The sentiment is eloquently expressed in this poem shared by Linda Kenney, who founded MITSS -- Medically Induced Trauma Support Services-- after nearly dying from an anesthesia error during ankle surgery.)

“If patients don’t share their stories, who are you going to learn from?” says Alicia Cole, a successful LA actress who now speaks about her near-fatal battle against  necrotizing fasciitis (flesh-eating disease), acquired following "routine" surgery.

But who ARE we, exactly? What DEFINES a “patient advocate”?

Lindsay Nohr Beck, left, with
Dr.Nancy Snyderman, at IHI

I’ve been thinking about this a lot lately, since a telling audience reaction during a plenary speech at the Institute for Healthcare Improvement Forum in Orlando last month, attended by some 6,000 people, mostly providers. On stage was NBC News Chief Medical Editor Dr. Nancy Snyderman and her long-time patient, Lindsay Nohr Beck, who pretty much single-handedly reformed insurance benefits so that cancer patients don’t have to compromise fertility. (Watch the fascinating and moving interview here). In telling her story, Lindsay laughingly referenced the negative reaction when doctors or insurers were told by their staff “the patient advocates are waiting to meet with you”.

In the audience, this comment was met by a ripple of knowing (sympathetic?) laughter. A snicker drew my attention to the man on my left, who met my eyes with a nod and an eye roll. As a patient advocate myself, it stung.

But then, I realized, it’s understandable.

Because, what is it that defines a “patient advocate”, anyway? Is it the nurse who privately encourages a family to ask for a certain treatment? A mom with a third-grade education who insists to her doctors “my baby’s breathing just isn’t right?” A father who loses his son to multiple medical errors and spends a lifetime making sure the same mistakes don’t befall another family? A person with formal advocacy training who hires herself out to sit at a patient’s bedside, managing care, paperwork and billing? A physician who calls a colleague late at night to discuss a tricky diagnosis? A survivor crippled by multiple botched surgeries and impoverished by legal and medical bills firing off desperate, outraged emails to the news media? Or the elderly man who calmly declines aggressive intervention for his terminally-ill wife?

Yes, all of the above. We are a random, diverse and self-defined group. We are collaborative. We are rebellious. We are seasoned and thoughtful. We are raw and angry. We see good in every person who devotes their life to health care. We see enemies everywhere in the “medical/industrial complex”. We have no medical training at all. We have devoted years to taking courses and achieving certifications to understand the system and how we can help improve it. We are a rich, bubbling stew of passions, visions, hurts, head trash, and hope. In short, both before and after our “medical awakening”, we represent the full spectrum of the human condition.

At the IHI Forum for speaker training (second session), L to R:
Pat Mastors, Joyce Resin (IHI), Alicia Staley,
Jean Rexford, Alicia Cole, Dave deBronkart,
Catherine Rose, Barbara Lewis,
Randi Oster (missing: Patty Skolnik)

I can sympathize with health care organizations, working to meet financial and cultural benchmarks of “patient-centered care”, trying to embrace and collaborate with this motley crew of “patient advocates”.  In 2013 I personally was honored to work with the federal Partnership for Patients (PfP), the Center for Connected Health (CCH),the Institute for Healthcare Improvement (IHI), the Consumer's Union Safe Patient Project, the Institute for Patient- and Family-Centered Care (IPFCC), and the National Patient Safety Foundation (NPSF), among others. Of course my colleagues and I appreciate being invited into the conversation, having our input solicited, and in notable cases, seeing our feedback incorporated into practice. (IHI and the PfP in particular deserve credit for taking steps to support professional development for patient advocates.) 

But if we patient advocates want a beefier role in the dynamic of quality improvement than that of “invited guest”; if we truly want to lend meaningful support to clinical excellence, have impact at health conferences, ensure that policies are patient-centric, carry weight in legislatures and on medical boards, and inspire physician practices, we have to elevate ourselves as a group, to consistently convey the very leadership, professionalism and respect we expect from our providers. Otherwise, how will they avoid the “box of chocolates” dilemma? (“You never know what you’re gonna get”)?

More patient advocates than you might think have achieved that respect. Listen to “e-Patient” Dave deBronkart, Patty Skolnik, Regina Holliday, Alicia Cole or Trisha Torrey do a keynote speech. Invite Helen Haskell to head a committee, develop a protocol or advise your board. Ask Ilene Corina to conduct a patient advocacy training.  Look to Julia Hallisy for patient empowerment resources. Ask Christian John Lillis how to organize and mobilize a patient/provider coalition. Learn from Kim Witczak how to pull a patient-centered conference together. Get Sue Sheridan to review your hospital's policies on disclosure of harm. (By the way, each of these remarkable people can do any of these things). These patient advocates (respectively, a marketing and IT geek, corporate executive, artist, actor, teacher, archeologist, postal worker, dentist, fundraising specialist, advertising consultant and banker) took a traumatic medical experience and transformed it into something instructive, positive and inspiring. And (with sincere apologies for not mentioning others) they’re just a handful of the patient advocate dynamos out there I’ve had the good fortune to meet and learn from. (And there are many more I look forward to meeting)!

But, like pioneers in any new social movement, most of us work with big passion and little help. Though some are modestly compensated through speaking, honoraria or grants, and some head organizations supporting patient agendas, (and some have had projects successfully funded on Medstartr), there’s no over-arching professional infrastructure that exists to support patient advocates’ professional training and development, underwriting the cost for their time and expenses to attend conferences, secure vendor booths, or host “networking” events. 

Pioneering, by definition, is lonely work.

But we continue, hoping we'll become obsolete-- when the issues of safety, inclusion, access and fairness we raise are honestly, meaningfully and routinely addressed. At the same time, the snickering and shuddering at the prospect of working with “patient advocates” will stop when we become respected as a group for the wisdom we've gained from our experiences, and the consistent professionalism with which we share them. 

To get there, both sides need leaders that focus on what we share, instead of what separates us. Who can, with awareness, re-cast seeming debacles into opportunities.

Richard C. Boothman, JD, MITSS 2013 keynote speaker
(Photo courtesy of MITSS)

On that note, I was inspired by the insightful remarks of one such leader, Rick Boothman, Executive Director of Clinical Safety for the University of Michigan Health System, delivering the keynote speech at the 2013 MITSS annual fundraising dinner. (Boothman developed the "Michigan Model", a proactive system of disclosure and compensation for patients following incidents of medical harm.) Here, he’s speaking about President George W. Bush and the infamous incident, following the announcement of US troop withdrawal from Iraq, where an Iraqi journalist hurled his shoes at the President. (In the Arab culture, apparently showing someone the soles of your shoes is a sign of contempt.) 

I leave you with an excerpt from Boothman's speech-- and an invitation to be inspired yourself.

…The journalist  “…was wrestled to the ground, beaten severely and hauled away,

Photo from Seattle Times

sentenced to three years in prison and reportedly tortured. 

Later the same day at another press conference with characteristic, self-indulgent swagger, President Bush quipped, “If you want the facts, it’s a size ten shoe.” 

I have played that incident in my mind over and over for the past five years. 

I think to myself, what if?  What if, in the chaos that followed the incident, as that man was being wrestled to the floor and beaten, the United States President had stepped down from the dais, parted the crowd . . . and helped him up?  And what if, recognizing the depth of emotion that compelled that journalist to do something so risky, so dangerous, so desperate - the same emotion that was driving thousands of Iraqis to protest in the streets - what if our President had invited him to meet privately to talk about how he, and his fellow Iraqis viewed the United States’ occupation of their country?  To explain how their lives had been so profoundly changed by a mistaken war? 

What a stunning scene that might have been, don’t you think? 

It takes more guts to understand, than it does to make light of a man’s desperation.  It’s a lot easier to label someone than to meet them.  It’s not a sign of weakness; it’s a sign of strength and compassion and moral conviction and respect.  This was an opportunity to demonstrate on a very basic level, that though we shared sacrifices profound and intimate and dear with the people of Iraq, we also acknowledged the greater impact that war and ensuing occupation had on the Iraqi people. What a statement that might have been to the people of Iraq, to the people of the Middle East, to the world. 

What are we afraid of?  What prevents us from making such basic human connections?"

10 Ways to Achieve a Medical Miracle

Jess & me

Sometimes a medical nightmare teaches us something about our own power.

This summer, our daughter Jess recovered from a paralyzing nerve disorder within 3 months, less than half the minimum time her doctors insisted it would take. We (she and our family) resolved in the earliest days we would be active participants in the care process.

Here, Jess writes (originally on her blog) hoping her words reach people looking for miracles.

HOW TO ACHIEVE MIRACULOUS RESULTS

IMAGINE that you go to sleep tonight perfectly healthy, and a few days from now you wake up too weak to walk. The doctor explains that the problem is your immune system – it got confused and is attacking the myelin sheath that coats your nerves. She says that the paralysis is going to get worse before it gets better, and that it’s going to take you 6 months to a year to recover.

This is what my neurologist said at the start of the summer when she diagnosed me with a rare
auto-immune disorder called Guillain-Barre syndrome (GBS). When I refused to believe it would take 6 months to recover, she insisted I should keep my expectations “realistic.”

3 months later, I’m going for daily 4-mile hikes and occasionally spicing it up with a 20-mile bike ride to the ocean and back.

When a local TV news reporter asked if my recovery was a “miracle”, a few things went through my head. First was: This reporter clearly just wants an uplifting soundbite to stick onto the end of a predominantly fear-mongering story. Second was: really, local news? I don’t know why I expected more from you. 


I tried to skirt her terrible question and offer something real, but in the end she lopped it all off except the skirt itself, which was: “miracles exist but you have to believe in them.” In doing so, she fumbled an opportunity to educate others about what they can actually do to improve their outcomes.

So, as much for my own closure as to add something empowering to the ocean of lament that exists on the Internet, here is a list of  10 practices that played a key role in my “miraculous” recovery. While they are written from a medical perspective, they can be applied to a broad range of situations with a little imagination.

To be fair, I had a few “positive prognostic factors” going for me as an otherwise healthy young athlete who received the correct diagnosis inside the critical window. My mother is also one of the most passionate patient-engagement professionals out there, so I knew I had a critical role to play. Combined with a strong dreamer mentality, I was uniquely positioned to have an amazing outcome – and you can be, too.
Here we go:

10 PRACTICES TO HELP YOU ACHIEVE MIRACULOUS RESULTS

1. Ask relentless questions.  Rather than sit back as a passive recipient of care, lean into the discussion and invite others to help you understand.  Question the condition, treatment, medications, procedures, painkillers, interactions, and alternatives. When you don’t understand something, say so. If you do this from a place of genuine curiosity and investment, your care team will respond by stepping up their game: doing extra research, giving you more information, and seeking your input when it’s time to make a decision.

Just imagine being a doctor for a second – you’re talking to two different patients about their respective conditions: one who regards you blankly and says, “whatever you say, doc” and another who looks you directly in the eye and asks you a series of intelligent questions that you don’t really have the answers to. Which patient makes you want to bring your A-game?
When you are hungry for understanding, you inspire the same hunger in others.

2. Embrace uncertainty. Despite all your questions, you may receive zero satisfying answers. Especially with something as rare as GBS, the fact is that no one really knows anything with certainty. So rather than freak yourself out about not having the answers you want, choose to see the enormous question mark as an opportunity to create your own outcome. If they don’t know, why couldn’t it be this?

3. Set an intention and announce it to everyone. I told anyone who would listen that my intention was to recover faster than they said I would, even though some people (like my neurologist) probably thought I was setting myself up for failure and disillusionment. The secret is to also tell yourself these things, every morning when you wake up and throughout the day whenever you feel sleepy : “I am rapidly regenerating my myelin sheath. I am building strength in my hips, glutes, quads and ankles. I am recovering faster than anyone expected.” The goal is to surpass your conscious (critical) brain and get your subconscious brain to start scanning your environment for different types of evidence.

4. Conjure your Golden Cocoon. The Golden Cocoon is a meditation concept that my father introduced me to while I was in the hospital. He regularly instructed me to close my eyes to the antiseptic environment and the pain and envision myself bathed in golden, healing energy. When you envision your resting state this way, it becomes much easier to recognize when certain people or activities are in fact draining that energy. (As the critical nature of my situation lessened, this turned into a joke of sorts, as in: “you’re intruding on my Golden Cocoon.”)

5. Invest in a Nutri-bullet. (Or something just like it.) This single invention (and the fruits and veggies it turns into fiber-rich smoothies) is the reason I didn’t have to take the four different laxatives prescribed to manage the unfortunate side effects of opiate pain meds. Even if you’re healthy and regular, this is one of the best things you can do for your nutrition and energy level. If you have a juicer, ditch it – without the fiber, all you’re getting is a sugar rush.

6. Ask for help! This is not something that comes easily for most, but it helps when you have no choice (thanks, Universe). I was super lucky to have the family that I have, and they all deserve gold stars. But they didn’t do it alone either – they asked for help too, and this made an enormous difference. Just one example: We asked the neurologist about nutrition – she had no idea, and she didn’t seem to think it was all that worth investigating. And if my mom hadn’t reached out to everyone in her network, we never would have learned that myelin is made of “the good kind of fat” and we never would have loaded my diet with avocados, nuts, olive oil, and steak. We also wouldn’t have thought to supplement my medical regimen with Anatabloc (a minty anti-inflammatory derived from the tobacco plant) and liquid vitamin B-12.

7. Commit to being present. This is arguably the most important decision you can make, and you might say it’s the hardest one – because we live in a world of infinite opportunity, it is super easy to be consumed by FOMO (fear of missing out) on all the things you can’t do. Instead, decide that you are here for a reason and you might as well really be here so you can learn whatever it is you’re supposed to learn from it all. Plus, there’s plenty of time now to read all those books (knit all those sweaters/write all that code/watch all those movies) you never have time to read (knit/write/watch), and when you’re better (which you will be) you’ll be wishing you’d taken advantage.

But more importantly, when you are fully present, you notice all the little details that constitute healing and magic. You will notice when your left arm’s range of motion goes from this much to THIS much, and you’ll be able to thread all those small details into a larger feeling of progress. By staying present, my progress snowballed so quickly that by the time I held my hiking poles in my hands for the first time on the 4th of July and realized how close normalcy really was, it was almost more disorienting to let go of my new reality (“unable to walk”) than it had been to accept that I was paralyzed in the first place.

Take a second to think about that: I had accepted my situation so fully that I almost didn’t want to let it go.  That’s commitment, which is something we’re all secretly terrified of. But let me tell you – it can be wildly liberating.

8. Don’t commit to the wrong person. My first physical therapist was assigned to me through the Visiting Nurses Association, and I wouldn’t call her awful, exactly. Something was just off - she didn’t make me feel safe (physically or emotionally) and I never felt excited that it was time for physical therapy. In fact, by the third session I had come to dread it, and even though I knew nothing about what physical therapy should be, I knew that dread was not an emotion that had any place in my recovery. So (even though it was inconvenient and rude) we gently gave her the boot.

Then we did another round of asking, which led us to Josh. By himself, Josh could be credited with up to 40 percent of the miracle. Josh just got it – he made me feel safe, supported, hopeful, strong, and authentic. And what’s more, he made me laugh! He never gave me any lists of repetitive exercises to do while he was gone, and every time he arrived he would ask questions about how I was doing and how I felt about what we did last time. He was constantly looking for ways to push me, and he was always celebrating my tiny victories. In fact, nearly every time I saw him (3x a week for 6 weeks), he was saying “wow!” in some way or another, and you could tell he really meant it.
Don’t ignore your gut. It’s all too easy to allow your momentum to continue carrying you forward with the wrong person. If you do, you will be stuck doing band exercises (or the equivalent) for an eternity.

9. Do a cost-benefit analysis. Four weeks into recovery, I noticed that I started feeling disconnected and strange. Googling my medications revealed that one of them is a seizure medication used off-label to treat nerve pain (which only works in 1/3 of patients) that has been associated with increased depressive or suicidal thoughts. I asked my neurologist if we could cut back on it (she had me on 1800 mg a day!) and she said we would have to double the other one. I asked if there was anything else we could try, and she said no. Then she reminded me (forebodingly) that the nerve pain (manifesting as a burning sensation in my hands and feet) was the type that, “once it gets ahead of you it can be very difficult to catch up.” So that night I took twice the amitriptyline, only to wake up the next morning feeling awful and incapable of having any thoughts.

I decided then that I would rather experience moderate physical pain in the mornings and evenings (which, by the way, signals that your nerves are regenerating) than feel like a mindless robot all day. With my primary care doctor’s approval, I cut both doses in half, without any notable change in pain level. A few weeks later, with my parents shrugging their uncertain approval, I stopped taking my meds all together (even though I had a lot left) on the grounds that “it felt like it would be ok.”
And it was! Nobody knows your body and your mind better than you do. These days, doctors see a hint of pain and want to get rid of it right away by flooding your body with artificial chemicals that may or may not have the intended effects. Don’t just mindlessly accept whatever they recommend – it’s up to you to decide if the tradeoff is worth it.

10. Love (your) life and (your) people. This experience can be a profoundly humbling reminder of how much there is to be grateful for and how much community matters, if you choose to see it that way. I spent a lot of time reflecting on how fortunate I am to have such an incredible circle of family and friends. Many of them made time in their schedules to drive or fly out to Rhode Island just to spend hours sitting on the patio with me. I also had a few inspiring interactions with strangers and near-strangers who reminded me that “community” can be a lot bigger than we think.

The best thing you can do for your health and your life is to dwell in a place of positivity and gratitude. Your body is a factory, and your emotions produce chemicals in your body that either promote or inhibit healing. FACT: Love heals. It’s science. So try to produce as much of that as possible – as much for yourself as for everyone else.

So that’s it. My sincerest thanks to everyone who offered their support this summer – I simply couldn’t have done it without you. I’m lucky to be closing this chapter now, but if you or someone you love wants more information, know that I’m part of your community and I’m always happy to help.

"I Can't Die Here. It's Too Ugly."

Award-winning architect Michael Graves

To designer and architect Michael Graves, paralyzed from a rare virus and in a wheelchair since 2003, the ultimate indignity came one day while he was a patient in a top-ranked hospital: “I was in a Hoyer Lift.” (a body sling mounted to a metal structure, used to help lift and move a patient). “The nurse was moving me from the bed to the chair, when another nurse came to the door and called to her friend, ‘Come on, it’s time for our break.’ After initially saying that she had to finish moving me first, my nurse changed her mind…and went on break with her colleague. So she left me dangling in the sling, midway between the bed and chair.”

For a moment hearing this, words escaped me. “What did you do?” I finally asked, horrified.

“My room was close enough to the nurses’ station that I was able to call out and eventually get somebody to come and help me.”

Yikes. I can’t imagine the indignity to any human being…let alone the stark contrast in respect this represented for an internationally-renowned captain of industry. But for Graves, it was only one of many moments that would fuel the next chapter he’d embark on as a designer.

During long weeks in eight rehabs and hospitals following his sudden paralysis, Graves was appalled to find patient rooms too tiny to accommodate his wheelchair; faucets and plugs out of reach; and décor (a euphemism) that prompted him to blurt “I can’t die here; it’s too ugly.” (Though the lobbies and public spaces of these nationally ranked facilities, he says, were gorgeously outfitted in granite and marble).

I interviewed Graves some months ago, for my book on how we need more simplicity and common sense in the way health care is delivered to patients. It makes me nuts that in many ways, the system we have is too often just the opposite – a gnarly, fractured behemoth, its growth fueled and shaped by the whims and widgets of hospitals and insurers, not the human needs of the vulnerable patient around whom the entire enterprise revolves. (Hey, hard to blame these institutions; they’re just playing by the rules they’re given). With reforms working their way through the system, things are slowly getting better. Slowly. (Did I mention “slowly”?)

Who better to help us figure out the intersection of health care and design—design meaning common sense, frictionless user interface, form following function-- than Michael Graves? With oodles of design awards, honorary degrees, a bunch of medals, plus libraries, resorts and company headquarters to his credit, (think the Swan and Dolphin Hotels at DisneyWorld, and scores of everyday products at Target Stores), he’s arguably the dean emeritus of how design can empower—or dis-empower—a patient. How exciting to tap the wealth of wisdom that rides around in that lovely mind.

When I finally met Graves and his team at their Princeton, NJ headquarters this summer,

Me with the amazing Michael Graves!

I was struck by the architect’s genial spirit, his warmth and kindness, and the absence of any caustic edge one might (undersandably) expect from his experiences. Hard to miss: the genuine affection he and his team feel for each other. (Several have been with him 30+ years).

I toured the building, saw mock-ups of buildings and complexes the Graves team was working on (the practice continues to churn out world-class projects), and finally met graphic designer Dounia Loupier (who, with Graves, designed the cover of my book). The team showed me some of the cool “life assistance tools” the firm has launched: a hospital bed table with a detachable bin for personal possessions, with drawer accessible from any angle; a redesigned wheelchair that’s safer for transport workers, more comfortable for patients and more cost-effective for hospitals. (Below is some video of Ben Wintner describing the Graves-redesigned hospital chair). These are all things you might want “when your day comes”.

 Getting back to his humiliating Hoyer Lift story, where he was left dangling in mid-air: Graves tells it for one reason: to illustrate how important it is for a hospital to have a culture of care—and how egregious harm to body and spirit can occur when it’s absent. “These workers aren’t bad people. I don’t blame them. They may have been trained medically, but they haven’t been trained in any culture of care.” Graves points to how other companies work from the top down to create this unified approach. “Apple, for instance, has its VP of sales interview and train managers, who in turn train secondary managers, who in turn interview and train every single worker and helper, so the interaction with the customer is consistently up to the same high standard. That’s what it takes.” Absent this level of attention, Graves says, Apple might lose a customer’s business. In a hospital, the loss can be much worse.

Graves’ better designs for hospital furniture, shower chairs, and canes that zip into satchels offer a glimpse into a future where every person’s dignity and control is honored as a birthright, regardless of physical limitation. However, Graves’ crusade to put such tools in others’ hands is tempered by realism. While Stryker has partnered with his firm to bring many of these products to market, for the most part you’ll have to go through a distributor and order them online. Like crutches, walkers, and other mobility tools, if you can find them at retail stores at all, it will most likely be in a separate durable medical equipment (DME) store. (A notable exception is pharmacy chain CVS, which operates twenty-eight CVS “Home Health” locations around the country.)

The obvious question: what about Target stores, where Graves-designed products became iconic of “good design accessible to all”? After fifteen years designing for Target, Graves’ relationship with the giant retailer came to an end in early 2012. “I tried like crazy to get them to sell the new mobility designs,” he told me. “They said they’d do it when Walmart does it. And Walmart’s not gonna do it until customers ask for it.”

Graves hopes for help from a group of customers “that’s the right demographic and the right age: ‘sandwich moms’.” These are moms assisting aging parents while raising their own families. According to Consumerist.com research conducted in 2009, “There’s a huge unmet need for products and services that help care for aging parents now and in the future.”

Another new dynamic entering the landscape: soldiers returning from combat in Iraq and Afghanistan. With advances in treating grievous injuries, many more troops are coming home alive—and facing new challenges. “Some twenty thousand of these kids are paralyzed from the waist or chest down,” says Graves. “They’re not only trying to rebuild their lives, but a lot of them can’t find jobs. Many of them are re-upping in the service.” Graves’ firm was commissioned to help design model homes to accommodate these vets; the Wounded Warrior Homes, at the Army’s Fort Belvoir in Virginia, served as prototypes for nineteen similar homes now under construction. The intention is to create “living laboratories” where occupants can test and give feedback on new features. “You walk into the home and have no idea it’s specifically designed for mobility issues. Everything is integrated and elegant,” says Graves.

Is it possible these wounded warriors might extend their heroism beyond the theater of battle by inspiring a more mainstream awareness of the need for universal design? “All of us will need some adaptations in our lifetime,” says Graves. “Our hope is this work for wounded warriors will spark further movement within the Department of Defense, and that the trend will carry over to elderly housing, and housing for all of us.”

It seems to come down to consciousness—something Graves promotes by having new hires at his firm spend time in a wheelchair. As for the world at large, Graves’ story about how he was left dangling in midair in a Hoyer lift, as wrong as it was on every level, is also indicative of the far more insidious harm that occurs when we devalue a person’s basic human dignity—or shrug when it happens. Bring up the subject of indignities suffered by patients, and see what stories come up—like a grown woman sobbing for a tissue at 3 a.m. because the bed table with the tissue box has been moved out of reach (and no one’s answering the call button), or a grandmother, asking to be taken to the bathroom, being told, “It’s shift change. If you can’t wait, you’re going to have to go in the bed.” These humiliations, both large and small, degrade not just the person experiencing them; they diminish all of us.

--Excerpted from Pat Mastors’ book, Design To Survive: 9 Ways an IKEA Approach Can Fix Health Care & Save Lives, with a Foreword by Michael Graves.  

Watch Ben Wintner of Michael Graves Design Group Demonstrating a redesigned patient-friendly chair.

For my Daughter, the Patient: a "Golden Cocoon"

Hospital transport arrives to take my daughter just after 9 AM. We’d been told her ultrasound and X-ray were scheduled for 10 AM, an hour away. Jess and I exchange a look. She’s just about to take another swig of the laxative drink she’s been drinking since 8:30. “I’ll go with you,” I say. “We’ll make sure there’s a bathroom nearby.”

Strike one for the Golden Cocoon.

We get to the ultrasound department, and are left alone in a holding room. We’re told the nearest bathroom is down the hall and to the right. Jess can’t walk. I stop a man in a white lab coat, explain the situation. He makes sure we’re ushered into a procedure room that has a bathroom.

Score one point for the Golden Cocoon.

Jess the day after she was admitted to the hospital

Five days prior, Jess had been diagnosed with Guillain-Barre Syndrome, an auto-immune disease where the body attacks the coating that protects the nerves. In the space of five days she’s lost the ability to walk unassisted. She’s wracked with back pain that can only be managed by intravenous morphine. Overnight, her face became partly paralyzed. We’re told her condition might worsen…the paralysis might move from her arms and legs to her chest. If it reaches her diaphragm, she won’t be able to breathe. If that happens, she’ll be whisked off to intensive care. A breathing tube will have to be inserted, to keep her alive until the symptoms begin to reverse. In any case, even if the worst never comes to pass, recovery will take six months to a year.

There is no cure. There is a treatment, an infusion dripped into her arm that carries a substance extracted from the blood of 20,000 donors. As we pray for this treatment to curb her paralysis, other problems rear their heads. Strong painkillers have seized up and stopped Jess’ digestive system. She can’t keep food down. There may be problems with her liver and kidneys, too, which is why she’s having this day’s diagnostic tests.

As the technician completes the ultrasound, the man in the white lab coat hovers over the screen. “Liver looks good”, he says. Great news, but Jess’ face is pinched. She is deep breathing now, in pain. Her morphine shot is due. “How long to get her to her X-ray?” I ask. “Depends how long it takes for transport to get here,” says the technician, wiping gel off Jess’ belly, not meeting my eyes.

Strike two points for the Golden Cocoon.

***

Our daughter Jess

Since she was admitted, my husband Jim and I have stuck to our daughter’s side like burrs on a Collie. I refuse to leave the hospital at night; he returns every morning. He sees Jess struggling to breathe through the pain, and hovers over his little girl, his tone soothing. “Take deep, calming, breaths. Belly to your spine, now let it out. You’re in a golden cocoon,” It’s an image from meditation practice, an activity that they share, where you imagine yourself bathed in a golden, healing light. You breathe it in, and breathe it out. Try not to let distractions, negativity and pain reach you. To preserve her Golden Cocoon, Jim brings rose oil and dabs it under her nose. We greet everyone who enters her room like they are guests in her life, guarding Jess’ sleep and peace as best we can. I massage Jess’ numb legs and feet with lotion… legs that just months before had taken her on a 2,200-mile walk traversing the entire Appalachian Trail. Rubbing her legs, I smile up at my beautiful daughter. I can’t let her see the sadness and fear that well up inside me.

But we have our work cut out for us. As an endless cast of doctors, nurses, specialists, phlebotemists and therapists rotate in and out of Jess’ room, each needing to extract something (blood, information, a vital sign) from her tortured body, some are truly wonderful. But some have no concept of the Golden Cocoon, or they wouldn’t grab her wrist to scan her bracelet without a word, or leave the door open to a noisy hallway when they leave, or send her off for an hour of tests after starting her on a laxative.

***

Back in the ultrasound bay, I ask “is there any way we could hurry with transport to X-ray? Jess is in pain, and due for her morphine.” The man in the white coat looks up, turns to the technician. “Why don’t we just bring her there?”

I smile my thanks, squeeze Jess’ hand. Score two for the Golden Cocoon.

The Chief of Radiology transporting Jess to X-ray

I call Jim on my cell phone. “We’re heading to X-ray now. Can you talk to the nurse and make sure Jess’ morphine dose is ready just as soon as we get back?” We set off with Jess’ gurney, white coat man in the lead, ultrasound technician pulling up the rear. “That’s the Chief of Radiology!” the technician stage-whispers to me, referring to white coat man. “This is the first time I’ve ever seen the Chief of Radiology transport a patient!”

Score three points for the Golden Cocoon!

Jess is whisked immediately into X-ray. They are actually waiting for her. Someone has called ahead.

Score three points.

As her gurney is wheeled inside, Jim comes down the hall with Jess’ day nurse, Patricia. On her face is a big smile. In her hand is a hypodermic needle-- Jess’ dose of morphine. Jess sees them arrive, takes it all in. Her frown smoothes out, she exhales deeply. Her eyes close slowly. Tears leak out.

Score five for the Golden Cocoon!

Words can never express the gratitude of a terrified parent when such kindness is shown...when we feel seen, and that we matter. (I wrote about this in an earlier post about the Ken Schwartz Center for Compassionate Care). Think about it: as hospital patients, a parade of people you do not know have license to pierce and cut your skin, waken you out of your sleep, expose your body, move your things out of your reach, or refer to you as “the knee replacement in 305”. The dehumanization of patients is not conscious; it’s a consequence of the staff heeding rhythms, schedules and constraints they are told to serve. But when we let the little “dents” to the patient’s cocoon go unchecked, when no one points out how hurtful these seemingly small wounds are to our spirit and sense of self, it gives tacit permission for bigger ones.

Jess, her first day home, kitties at her feet

The secret ingredient is consciousness. We protect fragile things before we put them in the mail, insulating them from harm with layers of bubble wrap and sturdy cardboard.

Surely the hospital patient deserves no less.

Thankfully, our daughter Jess is recovering remarkably well. We're incredibly grateful to her wonderful medical team, and to more people than we can mention in this post, but that time will come. One thing is new: frequently, if we’re having any kind of vocal disagreement in her presence, Jess will warn us with a wink, “You’re hurting my Golden Cocoon!”

e-Patient Dave: "Humor and Bluntness"

e-Patient Dave

 Six years ago Dave deBronkart (better known as "e-Patient Dave") was battling stage 4 kidney cancer. On top of that, financial setbacks (owning two houses during a job switch and ending up with no job) might have ground a lesser man into the dust.

Fast forward to 2013: The cancer's a goner (thanks to modern medicine and Dave’s active engagement every step of the way). And Dave is gainfully self-employed in a field he pretty much carved out for himself. Tapping marketing and technical savvy from his pre-cancer life, an ability to make complex subjects understandable to lay readers, an energy level that could shame a two-year old, and a mega-dose of stage presence, Dave’s keynote speeches on patient engagement are in demand worldwide. His 2011 TED Talk that concluded with a chant of “Let Patients Help” has had nearly half a million views, and has been subtitled in 26 languages. Let Patients Help is also the title of Dave’s new book, published this past March. 

Pat Mastors: How’s the book being received?

Dave deBronkart: Superbly. It’s a short book (100 pages), so people are actually reading it!

It’s already been translated into Spanish, Dutch and Hungarian. German and Greek are underway. This is with no funding, no conventional publisher and no marketing budget. Next with the book: Finding out what happens when people implement what the book says. Maybe building ‘xx’ around it, like making implementation be part of my speaking fee. We’re looking at it.

Pat Mastors: Your schedule is jammed. Aside from the book’s success, what are some highlights of the year?

Dave deBronkart: To be invited to write an essay for the British Medical Journal is as good as it gets...trying to change the culture of medicine to give patients and providers a different sense of what the culture can be. Also essentially creating a market for my own services and making it work. Last year I finally became able to make a living doing what I do. I have a small office near my home in Nashua (New Hampshire) and have been able to hang up a shingle, and hire an assistant, and surround myself with white boards that help me brainstorm and keep track of things.

As for events…I’d have to look back at my schedule…Aetna, The SAS Institute, six state hospital associations this year. August will be the National Council of State Boards of Nursing. That's all within the industry, because they hold conferences. The challenge is reaching the patient community. So I write. This year I started blogging on Forbes.com. So that helps.

Pat Mastors: Leah Binder (President & CEO of The Leapfrog Group, a business-led healthcare quality improvement organization), says in a review of your book, “Dave deBronkart has been in that [patient’s] johnny and survived, and I don't think he ever once in his life just did what he was told without comment. He does so with a combination of humor and bluntness, which is why he is so widely respected not only by patient advocates, but by the health care industry". Why do you think you’ve been so successful on the speaking circuit?

Dave deBronkart: Leah said that? (chuckles). I’m aware of different segments and

priorities. It’s not about me. It’s about “what is the audience thinking? What will be relevant to their lives?" Ted Eytan, a great physician friend at the Permanente Foundation, starts some talks by saying, “It’s fine with me if you do email while I talk, because it’s my job to be more interesting than your email.” I think that’s perfect. I work my butt off to understand each individual audience and think about why and how my story can change their lives.

There’s nothing harder in marketing or speaking engagements than persuading people to adopt a solution to a problem they don’t have, and “mainstream America” isn’t in a health crisis – yet. My mission is to help society “prepare the house” for when that knock on the door comes, late one night. I want citizens to know it’s legitimate to augment their physicians’ advice online. I want everyone else – insurance companies, clinicians, policy people – to know it too, so they can help patients help themselves.

Pat Mastors: What’s a typical day in the life of e-Patient Dave?

Dave deBronkart: My style is multi-channel real time all-at-once, but with no sense of direction. I’m like a fire hose. Grab it and direct it, and beautiful things happen. It’s effective and does the job. If not grabbed correctly, it’s like a water snake—all over the place. Now I have an assistant, Kristen, who calls me at 7:30 am, and puts stake in the ground for my schedule that day. More and more, structure is making my day more focused and productive, and technical tools help. Everything is in the Cloud. To keep track of the business side of 200 events in the last 2 years, I use the Zoho CRM sales management system. Kristen also goes through all pending projects. The free Asana Cloud management system came out last year, so that keeps track of tasks. I do email after 7:30, then Zoho and Asana, and I use an app called Expensify. I take a photo with the receipt, and I can toss the paper. All these tools exemplify efficient systems that are free.

Pat Mastors: What are your tips for using social media?

Dave deBronkart: Number one, listen. You can just blather, but it won’t get you anywhere. Happily, to know what's intersting to people, you can just go on Twitter and see what they're saying, what they are talking about. Follow a hashtag and join the conversation by adding something to it that’s relevant…it's the same as being interesting in conversation in real life.

Second, when you speak, say something useful to the audience. Earn an audience. When you find an article others might find useful, tweet it. Others will re-tweet. Don't obsess about numbers.The most re-tweets I’ve ever gotten is 10. I’m almost up to 15 thousand followers on Twitter. 
In the early days I would crawl around from profile to profile, to see who’s following who. When I'd find someone interesting with lots of followers, I might respond to something they said. And if they re-treet it, suddenly others are seeing your name. Find people aligned with your interests and Tweet with them. You should also show spartly because ome personality, some opinion. It makes you human. 

The converse of all this is to not listen and not pay attention to how audience is reacting. And that, by definition, makes you not interesting.

Pat Mastors: Aside from getting Let Patients Help to be used more broadly, what’s next for you?

Dave deBronkart: I want to create the next wave of patient speakers. I cost (charge) more than many organizations can afford now. I want this summer to start a "speaker’s" academy of informative blog posts. It would probably start with adding a page to my website. As in, “Here is what you need to know about how I do it”. Partly to help other patient advocates and bring in more voices, and partly because I want industry to hear them. They [the advocates] need to be taught what I learned, though…that it’s not about me. 

Dave manifests that "it's not about me" attitude in other ways. To the extent his schedule allows, he's a focused and effective cheerleader for the work of fellow patient advocates and health  innovators.  He's drummed up crowd funding support for our projects on Medstartr and Healthtech Hatch, including a recently funded film about Regina Holliday's Walking Gallery of Healthcare.  He's also been a great mentor and friend to me personally, sharing invaluable insights in my newly published book: Design To Survive: 9 Ways an IKEA Approach Can Fix Health Care & Save Lives. 

Days after the above interview (conducted via a phone call squeezed into Dave's drive time), he launched the aforementioned "Speaker's Academy" with a post from Randi Oster. You can bet he'll build a great community there, setting us newbies straight, when necessary, with "humor and bluntness".