ORLANDO, Fla. — Health care is all about power, at least in the eyes of Don Berwick.
In what other social contract does one concede so much control to another individual? Take your clothes off. Put on this weird little paper gown. Take this strange pill. Turn your head and cough.
But Berwick — a physician and former head of the Centers for Medicare & Medicaid Services — believes that to reinvent health care in this new consumer-driven world, it’s long past time to begin shifting power back toward the patient. Millions of Americans are feeling lost and helpless — which Berwick believes played into November’s election results — and health care should take this opportunity to flip the script and empower them.
“On the day before I get ill, I am an autonomous, capable citizen,” Berwick told attendees during his closing keynote at the 28th annual Institute for Healthcare Improvement's national forum. “I can fill out my tax returns. I can ply my craft. I can make terrific Italian meatballs. I can counsel my adult daughter on how to handle her son’s new fears at school. I can finish the Saturday New York Times crossword puzzle. I can binge on three episodes of 'Game of Thrones' while answering 50 emails at the same time.
“And then I show up at health care’s dinner party and health care strips me. It silences me; it dresses me in a sheet; it takes away my work; it takes away my pleasures, my family; it tells me exactly what to do. ‘Take a breath, hold your breath.’ What if, instead, health care asked me what I can do, and thanked me for doing it? What if, instead, health care asked me if I would like to sit or stand? If I would like to speak or remain quiet? What if health care asked me for instructions, not doctor’s orders, but people's orders?”
Sometimes it can be difficult for clinicians and administrators alike to relinquish such control to patients. What if they goof something up? What if someone gets hurt? But Berwick offered five proven and tested examples of hospitals and other providers doing so recently, and saving millions in the process:
- Parkland Memorial Hospital in Dallas initiated a four-year pilot program that allowed patients to administer their own long-term antibiotics at home, rather than having to spend weeks in the hospital. All told, the pilot saved nearly 28,000 patient days at Parkland, along with almost $40 million.
- An amazing little boy named Zac, who has Crohn’s disease, has learned to insert his own nasogastric tube, calming the condition and avoiding the use of heavy-duty medications. He even put the process into a video so that he can share those skills with other kids.
- Alder Hey in the Park children’s hospital in Liverpool, on the other side of the Atlantic, uses a different approach to feeding patients — allowing them to eat what they want when they want it, made to order by a chef. That’s led to improved nutrition and education for patients, with food costs plummeting due to less food waste.
- Bellin Health in Wisconsin has helped to launch a coalition called Live Algoma, which is a partnership among the health system, the local school district, community agencies, employers and the government. It empowers community members to work in concert to improve overall health and well-being, including high school students leading improvement projects and coaching younger kids on living better lifestyles.
- And finally, Sweden's Ryhov Hospital has initiated a self-dialysis program that allows patients to come and go as they please and administer their own dialysis.
Berwick was joined on stage by two patients from Ryhov, who challenged hospital leaders hesitant to give up such control, to “see the person behind the patient” and “challenge the culture” of your own institution.
Central Texas Nephrology Associates, Waco, Texas, has begun to test such patient-driven approaches to dialysis, and the data have been “stunning,” with hospitalization and mortality rates plummeting, said Richard Gibney, M.D., part of the dialysis group. It took a huge shift in mindset, but the new normal is much more rewarding for employees, he said in a video clip played during the presentation.
“The staff had to make a radical change. They’re going from being worker bees who run around the clinic doing everything to becoming teachers, coaches, trainers, cheerleaders — and it’s a profound experience,” Gibney said.
To help make this radical change, Berwick offered a list of eight steps your hospital can take to begin shifting the balance of power toward the patient. Here they are in his own words:
- First you have to want to. It’s really hard. It threatens so many assumptions, so many structures, short-term interests in the status quo. You have to want to. And then use what the patients and families are bringing to you. Accept the gifts.
- Talk less, ask more. How can we know what matters unless we ask? How can we know what people can do for themselves unless we stand aside?
- Make transparency limitless. The best way to keep power is to keep secrets. Turn the machine toward the patients. The best way to shift power is to share knowledge.
- Examine and change the silly rules that stand in the way of that shift. Look, if you really want to repeal and replace something, how about you repeal and replace HIPAA? We have built a deeply flawed rule base for that and we have way, way overinvested in stupid privacy rules that don’t help anyone at all. They don’t have to do with privacy. HIPAA needs a haircut.
- Equip our homes and our communities every way we possibly can to replace the institutions that disable us. Moving care from hospital to home is a powerful way to restore the balance of power. In hospitals, we keep making the mistake of thinking we’re the hosts instead of the guests in our patients’ lives. Moving care home makes us think twice about decorum.
- Share decision-making. The tools exist. They’re online. They’re there for you. Decision supports, online tools, new technologies. The smartphone is going to be our light saber, we Jedi, in the struggle against helplessness.
- End the habit of designing core systems around hard cases. It’s easy to imagine a person who can’t do self-dialysis, but that doesn’t mean most of us can’t. A lot of the destructive restrictions that we have added to care, they’re there because we can imagine a rare, outlying case that requires those restrictions. Good rules for the very few are bad rules for the many.
- N = 1 care. Shifting power implies customization. It means that we respect the fact that the treatment of every single person is an experiment of size N = 1. If we did that right, we would learn and adjust as we find out through treatment what that treatment does in that individual at that time.