MICHEL MARTIN, HOST:
I'm Michel Martin, and this is TELL ME MORE, from NPR News.
Coming up, we will meet the ripped reverend. She is an Episcopal priest and competitive body builder. That conversation is just ahead in Faith Matters.
But before we talk about fitness, we wanted to talk about sickness. And if you've been listening to the network this week, then we hope you have caught some of the segments from NPR's series "Sick in America." NPR partnered with the Robert Wood Johnson Foundation and the Harvard School of Public Health to interview more than 1,500 adults to try to find out what it's like to be sick in America and to figure out whether attitudes about health care of people who have recently been sick differ from those of the people who have not. And the results are striking.
People who actually needed health care in the last year had much more negative views than people who did not, and there are some interesting clues about why. Nearly half of the people who had been sick said the lack of cultural understanding was a major reason for problems with the quality of U.S. health care.
We wanted to talk more about this, so we've called upon NPR health and science correspondent Richard Knox. He culled through that data and talked to a lot of people about their experiences. We're also joined by Dr. Kavita Patel. She is a practicing primary care physician. She's also fellow at the Engelberg Center for Health Care Reform at the Brookings Institution. I want to thank you both so much for being here.
RICHARD KNOX, BYLINE: Sure.
DR. KAVITA PATEL: Thank you for having me.
MARTIN: And I just want to say, there are so many things that we could talk about. We can only touch on a few and we just want to focus on a couple of the things that stood out to us. And earlier this week, we talked to Brittney Cooper. Brittney is an assistant professor at Rutgers University. She's the co-founder of a blog called the Crunk Feminist Collective.
She was admitted to a hospital in south New Jersey earlier last month for a stomach issue. A doctor gave her a pregnancy test. She says 12 hours later a different doctor ordered another pregnancy test and we'll let her tell the story from here.
(SOUNDBITE OF ARCHIVED BROADCAST)
DR. BRITTNEY COOPER: So I reaffirmed for him quite insistently that in fact I was not pregnant, that there was no possibility of it. And then he said to me: Well, because, I mean, if we give you these drugs it could really harm the baby. And I said there is not a baby. And finally he let it go. But with this very strict look towards me as if to say - well, he actually did say to me, you know, because there are liability issues involved. So there was this complete disbelief even though his own hospital had done the test 12 hours prior.
MARTIN: So, Richard, let me start with you. This whole question of communication - was that a big issue in the people that you spoke with?
KNOX: Yes. It certainly was. I mean, it's understandable they'd ask about pregnancy and they really want to be sure for the reasons that she said. But not being aware of the earlier pregnancy test, yeah, that sounds familiar. About 30 percent of the hospitalized people - recently hospitalized people who answered our poll, they reported poor communication among the caregivers.
And then when I - you know, we put out a call on Facebook to ask people to share their experiences and we got hundreds, you know, hundreds and hundreds of responses and we went through every one of them. There were a lot of complaints about poor communication and disrespectful treatment. One woman said that the hospital felt like a factory. Another said, you know, nobody was talking to anybody else. There was a complete lack of coordination.
In the poll about one in seven said they had to redo a test because the earlier results were lost, and about one in five said that they were not treated with dignity or respect.
MARTIN: Dr. Patel of the Brookings Institution, one of the things you're actually working on are trying to come up with solutions to this issue. And what have you come up with?
PATEL: We actually would echo exactly what your patients have been telling you, Richard, on Facebook and from the perspective of health professionals that they feel like they're helpless in this. Because the payment system in health care as well as the way we still live in this siloed nature and paper charts still do exist, and that's why these tests get repeated.
So we're trying to work on payment solutions as well as systems approaches that can improve the health care experience for everybody and so that we don't have problems like what Brittney's story brought up.
MARTIN: You know, there's also a social aspect to this. I mean, we talked about two things. We talked about communication among the health care professionals. We also talked about the communication with the patient. And this is another thing that Brittney told us when she was talking to a nurse. Brittney says the nurse was surprised that she was a professor because of the way she wears her hair. I just want to let her tell the story from here.
(SOUNDBITE OF ARCHIVED BROADCAST)
COOPER: I needed to remind myself that whereas I saw myself as a sick patient, what these doctors were seeing was a woman who has a weight problem, a dark-skinned black woman with this kind of natural hair that was unkempt. So all of those things, culturally, I think are coded to mean that I'm working class, perhaps a welfare case. And then there's all of this disdain that comes with being a welfare case in our current medical system.
MARTIN: Dr. Patel, that is actually - Brittney's expressing herself in a very calm and elegant way but what she's saying is actually, I think, very damning. And I'd like to ask whether your experience as a practicing physician is that true and are people in the medical profession aware of the fact that this is how they are viewed? They are viewed as making quick assessments, especially profiling people.
PATEL: We have a great deal of research that goes back decades looking at so many of the factors that contribute to what I think you alluded to earlier, which is just disparities in care as well. That people are not receiving quality care across the same consistent levels in this country.
And just from a personal experience as a practicing physician, I've been trained to think about everybody - everything that I do from the moment a patient walks in the door, my background and medical training puts into place a series of observations about a way a patient speaks, a way that they particularly are walking into my office and sitting in front me.
And so, I think what Brittney's story is showing us are some of vulnerabilities in our system. However, I would definitely tell you that we have a lot of awareness about where we need to make progress and that's much more important. And I think what your poll has shown is that both patients and the health care system itself is very sick and needs to find a way to be better.
MARTIN: Are you saying that there are some ways in which profiling is actually necessary? Like if you see someone come in who's a smoker it's important to take that into account. Is that what you're saying? But you're saying...
PATEL: I - it's...
MARTIN: Help me understand what you're saying.
PATEL: Yeah. It's not - I didn't want to use the term profiling because honestly in my mind I think about everything and it's just how a person's systems are revealed to me through the way I can listen to them with the stethoscope, and that's much more clear for what doctors do. But even more importantly, we always talk in medicine that 80 percent of the diagnosis is the story of a patient.
And that story literally begins once they walk into the door and I can see them. And so, I think where Brittney's story is really unfortunate is that somebody made a series of judgments, it sounds like. However, I can tell you that that is not the way any of my own practice or my own colleagues have ever, ever been trained.
And so, what I think is more important to learn from Brittney's story is that we have a lot of patients who are frustrated with the experience, the communication, and the way the system is treating them. And I think that that's something that we have to work on more collectively as a society.
MARTIN: If you're just joining us, you're listening to TELL ME MORE from NPR News.
We're talking about NPR's survey about what it's like to be sick in America. We're just scratching the surface here with NPR health and science correspondent Richard Knox and Dr. Kavita Patel of the Brookings Institution. She's also a practicing physician.
Richard, I wanted just to talk a little bit more about that. And, again, I want to emphasize that the series over the course of the week has covered many, many issues. And if people are interested in digging in further we'd love for people to go to npr.org and dig in further and listen to a number of the reports that have aired this week.
The report did not hone in on racial and ethnic issues per se, but were there areas in which you saw some important racial divides, or ethnic divides, that were important to point out?
KNOX: Yeah. Well, first of all, I think it's important to point out that the poll was designed - and this is unusual as polls go - to compare the experiences of people who have been recently sick versus people who hadn't. And we saw some interesting divides.
As you mentioned at the outset, nearly half, 47 percent of people who had recent contact with the U.S. health care system, said that they thought lack of cultural understanding is a problem in U.S. health care. If you look at people who hadn't had recent contact, it was 30 percent, which is a pretty substantial share. But, you know, people who had recent contact really felt more strongly about that.
When we asked people about their care only about 6 percent said they were treated poorly because of their race or ethnicity or cultural background or the language they spoke, which is a little bit surprising and inconsistent. I think probably the difference is that the six percent response is kind of diluted because most of those people were not minorities. If we had enough numbers to look at minorities as, you know, subgroups and parse it that way, we probably would have gotten more of those kinds of responses, I'm guessing.
MARTIN: Dr. Patel, we have a couple of minutes left and I just wanted to ask in the time that we have left - are there things that patients can do to make the experience better? Because I think that what stands out for me in reading the survey is just a level of frustration, a level of fear.
I mean, there were stories of, you know, the financial burden, say, of illness. For some people, you know, the experience of people who, even with health insurance, finding that the burden of being sick is far greater than they thought it would be. Are there just some things that you think people can do right now that are within - what's in their own power to make this experience better?
PATEL: Absolutely. The first thing is to - especially in the case of Brittany. I as a primary care doctor wanted to be able to tell Brittany, I wish you had a primary care physician who actually knew that you needed to go into the emergency room and could also help talk you through what that process would be like.
So the first thing would be get a primary care physician. If that's hard to do, try to find out from some of the websites, like HealthReform.gov and others, how to get a physician in your area, which these websites can help you with.
The second thing is to do a little bit of intelligence and research. I know sometimes emergencies don't let you do that, but the Web has offered us a lot of highly reliable resources from the National Institutes of Health and other agencies within and outside of the government, as well as, I think, NPR.org has had a number of these forums in which we can get a better sense of what an experience would be like.
And I think that talking to your other friends who have had similar experiences is the final piece of advice because we all have a sense of where we can go, which doctors and which health professionals have that sense of what I think we're all looking for, which is humanity and professionalism, and that's certainly what I was trained with and that's certainly how I've tried to practice every day. And so those are three basic tips.
But first, starting with someone who knows you. That's what all my patients have and that's what I think is the essential element of truly coordinated care.
MARTIN: Dr. Kavita Patel is a primary care physician. She's a fellow at the Engelberg Center for Health Care Reform at the Brookings Institution. She was kind enough to join us from our bureau in New York.
Richard Knox is a health and science correspondent here at NPR. He joined us from his home office in the Boston area.
Thank you both so much for speaking with us. So much more to talk about.
PATEL: Thank you.
KNOX: Happy to help.
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