Truth time. I've learned way more about being a hospital patient (and advocating for one) than I can jam into my website for the Patient Pod. I'm also fascinated by how enterprises get to the top of their game, delivering on quality, satisfying customers consistently and affordably --- couldn't health care be more like them? (Loved Atul Gawande's piece on what health care can learn from the Cheesecake Factory's approach to delivering quality and consistency.) I smooshed these two passions together and wrote a book. If IKEA Designed Health Care: 9 Ways It Would Partner With Patients will be brought into the world by Morgan James Publishing. Below is a bit about why I wrote it, and how I think it can help. You can pre-order the book (and really get me excited) by going to my Kickstarter project here. I'm really hoping we can get a whole new conversation going. Thank you, my friends.
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Know anyone who had a bad encounter with the US health care system? My father sure did. Losing him to an infection in the hospital changed my life. We lose nearly 600 people to medical harm every day, even as the cost of care in this country is zooming toward 20% of our GDP.
In years of research (I was a news reporter most of my life) I figured out how badly consumers' eyes, ears and voices are needed if we're going to fix health care. But no one is more helpless to participate than the hospital patient, stripped of everything he owns. I created a Patient Pod that equips a patient at the bedside with tools to clean their hands, communicate with their world and keep their stuff at hand.
In designing the Patient Pod to be intuitive, understandable & affordable, the name IKEA kept coming up. IKEA is the biggest furniture company in the world. They base their global success model on a shared value proposition with customers from Riyadh to Reykjavik, to Round Rock, Texas: YOU share in the work, THEY provide stuff that satisfies your needs, at prices you can afford, and pass along the savings to you. What a concept in health care! That's how the idea for If IKEA Designed Health Care: Nine Ways It Would Partner With Patients started to take shape. I also found the IKEA story fascinating on its own --- A teenage boy selling pens in a poor town in Sweden, going on to build one of the biggest empires in the world. (FYI I have no affiliation with IKEA).
Below are chapter titles. The book has been professionally edited. I need to pre-sell the book to launch it ---and would love your help! Every day that passes is one more day the information could have helped someone in medical care.
If IKEA Designed Health Care…
1. We would always feel welcome
2. Instructions would be understandable to a 5th grader
3. A cool, one-stop website would help us learn, connect, and plan
4. We’d get tools for success when we walked in the door
5. We customers would have to roll up our sleeves and help
6. Prices would be clearly marked…and we’d pay our own bills
7. The team that serves us would act more team-like
8. Hackers (the good kind) would thrive
9. It would live to Innovate
In the book, Michael Graves (world-renowned architect and Target Stores product designer, now in a wheelchair) talks about his crusade to bring good design to health care. Cynthia Leibrock, the "guru" of universal design, gives you her best advice on how to fix your house so you can stay out of "THE HOME". We hear from top docs like Peter Pronovost, Atul Gawade, Don Berwick and Bob Wachter. Plus heartbreaking stories from my friends and patient advocate colleagues who lost children, or suffered unimaginably, because they didn't know in real time how easily harm can happen. You'll learn your own set of "best practices" from them.
I hope this book will bring us into a common mental model --- partnering to create better health care.
Read on for the first few pages of the Preface.
If IKEA Designed Health Care: 9 Ways It Would Partner With Patients
I’ve always been the type that wants to save every little injured or endangered creature I find. I’ve snatched mice from the jaws of my cats and stopped traffic to shepherd turtles and ducklings across the road. When my daughter brought me a baby hummingbird with a broken wing, I laid it gently in a bed of grass clippings and drove it to the wildlife animal clinic. (Sadly, they could not save it.)
Suddenly, animals started turning up dead in my yard day after day. We’d put in a swimming pool for the kids. Every morning I’d lift the skimmer cover, braced to discover what hapless new creature had come here for a drink, only to get sucked into something much bigger than it bargained for. I had rescued countless frogs, toads, salamanders—even a snake. (We lived in the woods after all.) But mice and chipmunks never had a chance, as their swimming skills were not the best. Imagining their final, desperate struggles, I knew I had to do something.
I squatted down to surface level (or eye level, for a furry little thing paddling desperately for a way out) and took a good look at the world from a mouse-eye view. No nook or cranny offered a foothold. Even the steps were under five inches of water. But it gave me an idea. I scrounged in my garage and found the lid from a Styrofoam cooler. I poked a hole in the corner, threaded a piece of string through the hole, and tied it to the pool ladder. Anchored to the edge of the pool, floating on the surface, maybe it would provide those struggling animals with a way out.
The next morning, when I lifted the skimmer cover and peered inside, nothing peered back. It was the same for the rest of the summer, and it’s worked every summer since. With a small change to the physical landscape, the pool had stopped being a death trap. Bottom line: give it a simple tool, and even a rodent with a brain the size of a jellybean will work like hell to save itself.
As hospital patients, how easily we become that hapless mouse. We find ourselves in an environment that, to outward appearances, is life sustaining, but which can quickly grip us in a confusing and frustrating battle for survival. We’re isolated from all that’s familiar and known, uncertain which direction is the right one. And the more we struggle, the longer we’re “in,” the weaker we get, and the greater the risk we’ll never get out.
The chance of being killed in a hospital per patient day is greater than the chance of being killed during the height of battle in Iraq per soldier per day. According to the Centers for Disease Control (CDC), more Americans are killed in hospitals every year (99,000 from hospital-acquired infections alone) than during all the years of the Vietnam War (58,000). A government study in November 2011 concluded that 1 in 7 Medicare patients suffers some kind of harm in the hospital, and that 1.5 percent of these adverse events contribute to the patient’s death. That’s 500 Medicare beneficiaries killed every day of the year.
"Did you know that a checked bag on an airline flight is still exponentially safer than a patient in an American hospital? It is not very comforting to consider that a toothbrush has a better chance of reaching its destination than a patient has of leaving a hospital unscathed. This begs the question…why? ... The primary reason it’s so tough to change the system is that no less than the culture of medical practice has been challenged and is, in effect, resisting change. This is cultural inertia, the ‘This is the way we’ve always done it’ syndrome, yet the root cause of poor patient safety performance lies squarely in the mythology that human perfection in medicine is achievable—the presumption that humans can practice without mistakes."
—John Nance, aviation and healthcare consultant, Why Patients Should Fly: The Ultimate Flight Plan to Patient Safety and Quality Care
“Health professionals are dedicated, smart, highly trained, motivated people. But working together in hospitals, they’re the fourth-biggest public health hazard,” says Brent James, Chief Quality Officer at Intermountain Healthcare. In fact, medical harm deaths in the US surpass only those from heart disease, diabetes, and cancer, according to the CDC.
Several years ago, my father became one of these statistics. Late at night, he got out of bed to use the bathroom and tripped, falling down the stairs. An operation to fix a resulting neck injury ended with his death in the hospital six months later, from complications of an infection called Clostridium difficile, or C. diff, caused by a germ that’s very common in hospitals. I didn’t know much about this infection at the time. I’ve since studied it quite a bit, and it’s pretty scary (more on that later).
Dad with our son, Nick
Dad had always been a fiercely independent man. I felt helpless watching his health and his spirit erode during what turned out to be the last months of his life. Gone were his autonomy, choices, and dignity. Not because of anyone’s deliberate behavior (every one of his caregivers was professional, and many were very kind), but because that’s how it is, too often, when you’re a hospital patient.
And apparently, it doesn't matter what circles you move in or how well-connected you are. Don Berwick, MD, founder of the Institute for Healthcare Improvement, found this out firsthand after his wife Ann developed symptoms of a rare spinal-cord problem at a leading hospital. As reported in Time magazine:
"…His concern was not just how she was treated; it was that so little of what happened to her was unusual. Despite his best efforts, tests were repeated unnecessarily, data were misread, information was misplaced. Things weren't just slipping through the cracks: the cracks were so big, there was no solid ground…[For example] an attending neurologist said one drug should be started immediately, that “time is of the essence.” That was on a Thursday morning at 10 a.m. The first dose was given sixty hours later, on Saturday night at 10 p.m. ‘Nothing I could do, nothing I did, nothing I could think of made any difference,’ Berwick said in a speech to colleagues. ‘It nearly drove me mad…No day passed—not one—without a medication error.’ If that could happen to a doctor's wife in a top hospital, he says, ‘I wonder more than ever what the average must be like. The errors were not rare. They were the norm.’
—“Q: What Scares Doctors? A: Being a Patient,” Time, April 26, 2006
If someone like Don Berwick can have such problems, where does that leave the rest of us? In a pretty vulnerable place.
The patient’s active participation and partnership have never been more critical. Says Atul Gawande, MD, a surgeon who writes about quality in health care, “I think the most important part the patient plays is not being passive about their part on the team. We [physicians] are not great at drawing out the patient; we've wanted the patient to be passive and not so involved, just do what we say…I think what we're learning is, the patients play a key role.” [1]
If that’s true, then like the mice in my pool, patients like my father need strategies that empower them to take on a more proactive role. Maybe they’d be more successful if the instructions they received were written at a level they could understand. Maybe less harm would occur if the culture of the medical world was less about hierarchy and more about teamwork. Maybe putting a few simple tools at their disposal would help them help themselves. Maybe patients would make better, more practical choices if the cost of care was transparent. And maybe there’d be better results if patients themselves were expected to work toward the creation of good outcomes, rather than continuing in their historic role as passive recipients of care.
As I would later come to see, these are precisely the guiding principles that led the IKEA company to achieve global success as the largest furniture retailer in the world.
[1]Doctor’s Orders: Don’t Stay Alone in the Hospital, Bigthink.com, January 19, 2010
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