The searing abdominal pain came on suddenly while Dr. Rana Awdish was having dinner with a friend. Soon she was lying in the back seat of the car racing to Henry Ford Hospital in Detroit, where Awdish was completing a fellowship in critical care.

On that night nearly a decade ago, a benign tumor in Awdish’s liver burst, causing a cascade of medical catastrophes that almost killed her. She nearly bled to death. She was seven months pregnant at the time, and the baby did not survive. She had a stroke and, over the days and weeks to come, suffered multiple organ failures. She required several surgeries and months of rehabilitation to learn to walk and speak again.

Helpless, lying on a gurney in the hospital’s labor and delivery area that first night, Awdish willed the medical staff to see her as a person rather than an interesting case of what she termed “Abdominal Pain and Fetal Demise.” But their medical training to remain clinically detached worked against her. Later, in the intensive care unit, she overheard her case being discussed by the surgical resident during morning rounds.

“She’s been trying to die on us,” he said. It made her angry, she says, because she was trying desperately not to die. “I felt he was positing me as an adversary. If my care team didn’t believe in me, what possible hope did I have?”

Awdish survived and returned to her work at Henry Ford Hospital, but her perspective was indelibly altered. In her recently published book, In Shock, she describes her through-the-looking-glass experience as a critically ill patient. The ordeal opened her eyes to communication lapses, uncoordinated care and at times a total lack of empathy at an institution that says on its home page that health care there “should be built around just one person: you.”

The health system has embraced many of her suggestions for change.

Today, she splits her time working as a critical care physician and as the medical director of care experience for the Henry Ford Health System. In the past five years, she and three colleagues have developed a program called Clear Conversations to improve empathy and communication with patients. At retreats that typically last two days, Henry Ford Hospital staff practice having difficult conversations with improvisational actors who play their patients. The program also trains providers in fundamental patient communications skills and offers real-time physician “shadowing” to provide feedback.

“To listen to our patients with a generous ear does require a willingness to relinquish control of the narrative,” Dr. Rana Awdish says in her book.

Courtesy of Henry Ford Health System

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Courtesy of Henry Ford Health System

Awdish regularly speaks about her work around the country at conferences and medical schools, “trying to capture the students a bit upstream,” she says.

“To listen to our patients with a generous ear does require a willingness to relinquish control of the narrative,” she says in her book. “Our questions allow for the possibility that we do not already know the answers. By not dominating the flow of information, we allow the actual history to emerge.”

Awdish spoke with me recently about her book. The following interview has been edited for length and clarity.

Interview Highlights

What about being a patient surprised you?

What surprised me the most about being a critically ill patient was how much what I needed as a patient was different than what as a physician I would have thought I needed. As a physician, I was truly focused on trying to provide the best medical care possible. I thought that meant trying to treat people and bring them back to health as fast as possible, not staying in emotional spaces.

As a patient, I realized that someone could treat me but if I didn’t feel they really saw me, that somehow I didn’t feel healed. That emotional space is really where healing occurs.

Through the Clear Conversations program, you’re trying to address the lack of effective communication and empathy you experienced as a patient. Did it help or hinder you that you were bringing this idea to your own hospital?

What helped me in my patient experience was that as much as I saw what was missing, I also saw myself in every failure. And it was very clear that as a physician I was a product of my training. We all are. That removed much of the shame. That very much helped.

Though I believed we were doing this for the patients, what was shocking for me was how valuable the physicians found the training. As physician and author Atul Gawande said, “We all need a coach.” Once we go into practice, where do you go for guidance?

Do the changes really “take” after a two-day workshop?

By immersing departments, by training not only senior staff physicians in how to have these conversations with patients but also their fellows and residents, we gain traction. Because if residents don’t see the communication tools valued by their mentors, they won’t value it. And everyone holds each other accountable. Everyone’s ears are attuned to the same thing. It does start to create change in the sense that expectations have changed for everybody.

How is insurance a barrier to change?

The system is not set up to facilitate conversation, to facilitate time spent with patients. It doesn’t facilitate things that are of value. The need to see patients so often to keep up productivity, and the limitations on time because we’re so caught up in electronic medical record charting — all those things pull you away from patients. It’s up to physicians to keep that space sacred against the competing priorities.

Is there anything that patients can do to help connect with a physician?

What I most wish people knew is that while the system is broken, the people are good. The system actually obstructs things like communication and access. So it’s up to us to figure out the best way to communicate on a one-on-one basis and create that sacred space between ourselves.

Kaiser Health News is an editorially independent news service that is part of the nonpartisan Henry J. Kaiser Family Foundation. Michelle Andrews is on Twitter @mandrews110.

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When a hepatitis C treatment called Harvoni was released in 2014, Dr. Ronald Cirillo knew it was big.

“It’s the reason that dragged me out of retirement!” he says.

Cirillo specialized in treating hepatitis C for more than 30 years in Stamford, Conn., before retiring to Bradenton, Fla. During his time in Connecticut, the only available treatment for hepatitis C had terrible side effects and it didn’t work very well. It cured the viral infection less than half the time. But the newer drugs Harvoni and Solvaldi cure almost everybody, with few adverse reactions.

“In my lifetime I’ve seen it change from a horrible treatment to a manageable treatment,” Cirillo says.

His mission is finding the patients.

“The disease is out there,” he says. “My job is to get the disease in here so we can follow them and treat them.”

Cirillo joined the Turning Points free clinic last year. It’s in Bradenton, about an hour south of Tampa. The clinic primarily serves uninsured Floridians who fall into what many refer to as a coverage gap in states like Florida that chose not to expand Medicaid. Falling into this gap are people who make too much money to qualify for Medicaid in the non-expansion state, but can’t get subsidies to buy insurance on the Affordable Care Act exchanges; subsidies kick in when people make 100 percent of the poverty level — about $12,000.

Cirillo is trying to test every high-risk patient he encounters. Today, his assistant pricks a patient’s finger, and squeezes blood onto the end of a small plastic tube.

“And this little measuring tool goes into the blood and solution mix there,” Cirillo says. “We are going to time it — 20 minutes and that’s it. That’s the test.”

Nearly 30,000 people in Florida were found to have hepatitis C in 2016. It’s likely that many more are infected, because the virus can lie dormant for decades.

Cirillo spearheaded a partnership with Harvoni’s maker, Gilead Sciences, and that partnership has provided treatment to about 100 patients.

“We treat people without any insurance, that have no hope,” Cirillo says.”If you qualify to be a patient here, you’ll get tested.”

A 57-year-old patient named Patricia discovered she had hepatitis C a few months ago during a trip to the clinic. NPR is not using her last name because the virus is sometimes associated with illegal IV drug use. It can also spread via sex. Patricia says she’s not sure how she got it.

“So, just because of my age, I guess, they went ahead and tested me for it and it blew my mind that I actually had hep C,” she says. “And the levels ended up being really high.”

The virus had started to scar and inflame her liver. But she lacked insurance and a job; the $94,000 Harvoni treatment would have been out of reach if she hadn’t had financial help.

“I would never been able to afford that treatment,” she says. “Never.”

Staff at the clinic help patients fill out the complicated application from Gilead. Only patients who don’t have insurance, have been drug-free for at least six months, and who meet income requirements are eligible.

Patricia was able to get the treatment — one pill a day for 12 weeks — and will be tested again in three months to determine whether she is free from hepatitis C.

“Had they not discovered it, really, and gotten me onto the program — who knows?” she says.

The Bradenton clinic is just one of many free clinics across Florida. But it stands out in its success in treating people who have hepatitis C.

This story was produced with the USC Center For Health Journalism’s National FellowshipandKaiser Health News.

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Federal taxpayers are pouring hundreds of millions of dollars into a quest for blood samples, medical information and fitness readouts from a million Americans. It’s called the All of Us precision medicine initiative, and it’s the biggest push ever mounted to create a huge public pool of data that scientists — and anybody else who is interested — can mine for clues about health and disease.

Proponents say this big data approach to medicine will be revolutionary. Critics aren’t so sure.

The plan is to recruit a million Americans to sign up for a program that will not only gather all sorts of medical data about them but will also follow them for at least a decade, possibly much longer. Their electronic medical records could end up in huge databases. The physical samples of blood and urine will end up in an industrial park in Rochester, Minn.

Mine Cicek, an assistant professor of laboratory medicine and pathology at the Mayo Clinic, leads me into a vast building with more than an acre and a half of floor space. “This used to be an old warehouse, but when we moved in three to four years ago, we really built a laboratory, and it’s in the space,” she says.

Power cords drop down from the ceiling to lab benches and robotic instruments, lined up row after row. These machines will help take the grunt work out of sorting through what will eventually be 34 million samples, gathered from all across America.

At the moment, the project is limited to pilot studies, with fewer than 100 samples a day coming off the UPS and FedEx trucks to be sorted, centrifuged and ultimately plunged in the deep freeze. But when the operation is fully up to speed, the lab may receive specimens from a thousand participants a day.

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Technicians examine part of a 74-foot-long freezer. Robots inside the freezer will handle millions of specimens and store them in even colder freezers inside.

Richard Harris/NPR

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Richard Harris/NPR

Cicek takes me into another cavernous part of the warehouse, filled not only with ordinary looking freezers but also with one behemoth — 74 feet long and more than 15 feet wide. It’s bigger than a railroad boxcar.

We loop around to the front, which has a glowing green slit, delineating the narrow freezer door.

Inside, robots pick up the samples, read bar codes stamped on them and store them in individual freezers hidden inside. The robot works in a freezer set to minus 20 degrees Celsius, sorting samples into smaller freezers kept at minus 80 C (or minus 112 degrees Fahrenheit). People only enter the freezer if there is a problem inside.

When everything is up and running, Cicek says, the incoming tubes of blood will be processed by a fully automated system. All she’ll have to do is pick up boxes of samples and feed them into this freezer.

And the scientific output for this enterprise? That is less tangible at the moment.

“It’s really a research resource that we’re building for the whole country, if not for the whole world,” says Eric Dishman, who runs the National Institutes of Health’s All of Us initiative from another anonymous building, in Rockville, Md., a suburb of Washington, D.C.

His job is to build it and then make the data widely available — to top biomedical researchers as well as to community colleges and even high schools, so all sorts of people can dive into the data and try to extract meaning from it.

Echoes of the human genome project

In some ways, this project is akin to the original effort to sequence the human genome more than a decade ago. It’s not an end in itself; it’s a tool. The idea is to bring the big data revolution that has reshaped online commerce and social media to science. Ultimately, the information could help make medicine more personal and precise.

Scientists don’t yet have a concrete plan, but Dishman sketches out the goals. “We keep looking at diseases in isolation,” he says. But by looking at entire genomes, he hopes scientists will get a better idea about how diseases are interconnected.

“The All of Us research program is really trying to bring a diversity of people, of health conditions, and a diversity of data sets to try to understand us more in our complexity,” he says.

Scientists might scour this pile of data for unexpected patterns or dive into it looking for answers to specific questions.

Dishman, who has lived through a 23-year odyssey with kidney disease and kidney cancer, uses his experience as an example. “I had $6 million of care. Now looking back at it, scientists tell me that 90 percent of everything we ever did to me was destined to be wrong.”

Medicine is often a matter of trial and error, so that is not so unusual. But Dishman also had the DNA in his tumor deciphered. That gave doctorsyet one more clue about what to do, and it led to an effective treatment.

“I’m nervous about sharing this story because it is hopeful,” Dishman says. “I also know there’s a lot of science, but also a lot of luck this worked for me.”

Still, he regards his story as a lesson about what the future could bring, in a world where genetic data are merged with information from medical records, exercise monitoring gear and whatever else can be put into a giant database for analysis. The hoped-for output of this will be “precision medicine.”

“We are in the early days of precision medicine and this is exactly why we need to accelerate the science and the discovery so there’s an evidence base for the decisions and choices we’re making for you as an individual, as well as the general population.”

Millions invested, future benefits unknown

Among those skeptical about the big talk — and big investment — behind precision medicine is Kenneth Weiss, who recently retired from his post as a genetics professor at Penn State, and has written about this issue.

“I think there will be some progress, but I also think this is also as much a slogan to get funding as it is a serious promise,” he says. The All of Us programreceived $360 million for its first two years of funding and hopes to run for many decades.

Gathering huge data sets may be useful for merchants trying to suss out consumer spending patterns, but he cautions that in biology, it may lead to more confusion than clarity. That is because many health conditions involve hundreds of genes, and the pattern is different in every individual. As it is, the more scientists look the more variants they find. So, he says, think about what that will look like when they have gathered a million samples.

“Bigger and bigger samples will just in a way identify more and more very rare or very weak effects, and the upshot will be each person will become even more different in terms of the identifiable genetic effects,” Weiss predicts.

When the human genome was sequenced, many scientists hoped they would quickly be able to identify the common genes that are responsible for common diseases, like diabetes, heart disease, high blood pressure and so on. That simply didn’t pan out. Common diseases don’t have common genetics. Weiss says it’s time to cut our losses pursuing that concept.

“I think we’re already at the diminishing returns point for many of the complex traits that important to our society in terms of health.”

The solutions to these common conditions lie largely in changing diets, exercise habits and tobacco addiction. Focusing genetic resources on diseases that do have strong genetic components makes a lot of sense, he says.

“But pouring more and more investment into these huge studies based on the idea that if you search enough computer data you will get an answer, I think is a false promise,” he says.

He would rather take the money being spent on All of Us and use it to work on gene therapies for diseases that have a clear genetic cause, such as muscular dystrophy or Huntington’s disease. “And once those [therapies] are developed — which I think they will be because I think humans are really good at engineering — then we can extend to the less clear-cut genetic traits.”

Meanwhile, if the goal is to improve the health of our population, he says, “let’s spend money on dietary exposures, exercise exposures, all the things that we know about to reduce the frequency of the kinds of diseases that we’re spending so much money to try to treat is if they were genetic.”

Given all the momentum built up behind the precision medicine initiative, Weiss is not voicing a popular point of view. But the retired geneticist says he has no ax to grind — and no brilliant insights about what would actually lead to medical breakthroughs. His concern is that biomedical research is committed to this idea because they have a tool they are eager to use — not because they have a clear path ahead.

You can contact Richard Harris via email.

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