When Lisa Cooper was growing up in Liberia, she wanted to be a pediatrician.
"I saw a lot of little children who were poor and sick, and I felt that I didn't want to see children suffer, that I would become a doctor and take care of them," she says.
There was only one problem. While in medical school at the University of North Carolina, she discovered something: "I really didn't like pediatrics.
"I liked children, but I could not deal with sick children," she says. "I felt so bad for them that I just could not do it. I decided to deal with adults."
That decision worked out well. Last week, Cooper was awarded one of the so-called "genius" grants by the MacArthur Foundation, $500,000 to be used any way she chooses.
It was Cooper's pioneering work looking into how minority patients are treated differently by doctors that drew the attention of the foundation.
"I think I always knew at some level, just because of where I had grown up and what I had seen, that there were all sorts of things other than just coming to the doctor that impacted people's health," she says.
Cooper is the daughter of a prominent Liberian surgeon, the former chief medical officer of the John F. Kennedy Medical Center, a huge hospital in Monrovia, the capital of the country founded by freed American slaves in the send-them-back-to-Africa movement of the mid-19th century.
Among other things, her father was personal physician to the country's president, William Tolbert Jr., who was killed in a coup on April 12, 1980, led by an illiterate Army sergeant named Samuel Doe. Cabinet members were tied to a stake on the beach and executed in a drunken orgy of violence.
"It was awful, awful, awful, awful," she says of that day, her 17th birthday. "Everything was kind of turned upside down. I was about to graduate from high school, but I never even went to my graduation.
"If you would have told me at the time that I would be sitting here talking about getting this grant, I would not have believed you," Cooper says. "I thought I was going to die. I thought my whole family was going to die.
"My father was not a political figure, but he knew a lot of people, a lot of people in the Cabinet. These were people he had grown up with. So he was somebody who was targeted."
Cooper fled, heading to Emory University in Atlanta, the only United States school that had sent her an acceptance letter when the coup took place.
"I didn't have a choice," she says. "I had a letter from Emory and a student visa. But it worked out. It's a good school."
Her brother was already in the United States, and her sister and parents soon came to this country. Her father died four years later of a heart attack at 56.
Cooper, 44, lives in Columbia with her husband and teenage son. Her mother lives nearby. How did you come to get interested in the interaction between doctors and minority patients?
After medical school, I came to Johns Hopkins, to get a master's degree at the School of Public Health, thinking I would study international health and maybe go back to Africa. But Hopkins got me interested in doing research.
I found out if you want to make changes, one of the ways is by documenting what certain problems are. If you can provide data, people can use that to make decisions about how health care resources are spent and you can really make change that way. So I thought I would try my hand at that.
I started looking at some things I had noticed during my residency at the University of Maryland hospital in Baltimore. One of the things that struck me was some of the issues I saw in my African- American patients were similar to what I had seen growing up in Liberia.
There were things like cultural beliefs, such as that cancer would spread if you had it operated on, or that mental illness had a religious aspect, that it was an indication that your relationship with God was wrong.
What I began noticing was that doctors didn't understand their patients, their beliefs and why they were behaving in the way they were. A lot of times, you heard doctors making assumptions about minority patients - that they would not follow through on some treatment plan, so don't even bother, or they wouldn't understand something, so don't explain it. This wasn't done in a malicious way, per se, but it was done.
I thought this was having some sort of impact on people's health care, so I thought I would try to document what was going on. If you just talk about things anecdotally, people won't give much weight to it. But if you survey thousands of people, then they sit up and take notice. So how did you go about researching the issue?
First, I was able to add some questions to a national survey on depression, how it was being treated. A lot of people are just getting treated by their primary care physicians, but our treatment protocols are based on people in psychiatric hospitals. So, are we treating people right?
One thing we found is that those getting treated by their primary care physicians were more likely to be minority. Why was that? Were they not getting referred to specialists? Did they not have the right kind of insurance? Or was it something else?
So we began to look at beliefs and perceptions about depression. One of the main things is that everybody is concerned about having a good relationship with their doctor. It is one of those diseases that should be treated by someone that a patient trusts, somebody who knows and understands the life of a patient, their whole health situation so they are not just calling someone depressed when it is another medical problem. That is the No. 1 priority, having trust in a doctor, having a doctor who communicates well with the patient.
That led me to wonder about seeing these black patients who are not getting referred for treatment. Is it a doctor-patient communication problem? I thought I would study that more, not just in depression, but in a broader way. Something is going on in that doctor-patient relationship that must account for the differences in treatment.
It meant getting into the black box that is the health care system. People go into the system and then they come out of it. We usually study them at either end. But what happens in the middle of all that?
Again, I was able to add some questions to another study that was going on among 65 primary care physicians and 1,800 patients in the Baltimore-Washington area. Minority patients reported that they were less involved in their decisions about their care with their doctors. And there was the twist that if they were seeing minority physicians, they felt more involved.
That was published as an article in the Journal of the American Medical Association, and that really put my name on the map, which led to the next study. That involved coming into doctors' practices and audio taping their conversations with patients. We had to get doctors, and then their patients, to agree, but most did quite readily.
We found a couple of things. One was that doctors talked more than they listened. But they talked 50 percent more than their white patients and 73 percent more than their minority patients. We also found that the minority patients sounded less assertive, less interested, than the white patients. So it was definitely something reciprocal.
We also found that if the doctor and patient were of the same race, they were a little more relaxed and engaged and the visits lasted a bit longer, about 2 1/2 minutes. We found that if minority patients visit minority physicians, they felt more involved and more satisfied with the way the visit went. Do you think this has any impact on patients' health?
That's what we were wondering. So we are working more studies. These are actually clinical trials, so we recruit people who agree to be randomized to one set of exposures or another.
First we randomize doctors. Some will get some sort of interpersonal training and education program on relating to patients, and some won't. Embedded in that would be these cultural issues and beliefs.
Then the patients are randomized. Some will get a coach, a community health worker who will work with the patients for a full year, making sure they are cued in as to how to get more involved in their treatment, coach them to help them formulate questions, what to say going into appointments, and talk to them about how their treatment is going, what they are worried about and why, what they would do different the next appointment.
We have known for decades that there is a problem with minority health and health care, so let's try to do something about it. Maybe communication is part of the problem. So let's do something to see whether we can actually make some changes that will affect that. Have you decided what to do with the MacArthur grant money?
I am sort of excited and a little bit overwhelmed at the same time. There are so many different directions this could go. Obviously, there is a lot more work that needs to be done here in America. One thing I would like to do is look at unconscious biases, determine ways to make people in the health care system aware of their unconscious biases to see if we can change behavior.
But my heart is still in Africa. I would love to do something that is really practical, that would have an immediate impact, where you would not have to wait 100 years to find out if it worked.
So I am torn right now. I would like to do something like that in Liberia, or even in Baltimore, perhaps a basic health empowerment campaign, something that might get people motivated, that might impact hundreds or thousands of people, that might have that impact sooner than if I were to use the money to delve deeper into these scientific studies.
I have only been back to Liberia once since I left, when my father died in 1984. I tried to go in 2000, and made it to the Ivory Coast, but was stopped because of some unrest. But I have a lot of family there and feel connected to the people there. I have been waiting for an opportunity to go and do something. This could be it.