Chapter 15: Minority Experiences in Healthcare: The Origins of Health Inequity

Chapter 15: Minority Experiences in Healthcare: The Origins of Health Inequity

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Description

Dr. Jones begins by saying that it is important to see health issues from a patient's perspective. He describes how gaps between patients and healthcare systems develop. He gives an example of how African-American patients are inappropriately labeled "difficult" and so they are excluded from clinical trials. Dr. Jones next recounts a story about the NCI and bias. This leads to a discussion of hoe individuals respond to the information that bias exists. Dr. Jones emphasizes that he uses the term "bias" instead of "racist." He notes that there is little bias in dealing with pediatric cancer, but once children turn sixteen, bias begins to be evident in their treatment.

Identifier

JonesLA_03_20140130_C15

Publication Date

1-30-2014

Publisher

The Making Cancer History® Voices Oral History Collection, The University of Texas MD Anderson Cancer Center

City

Houston, Texas

Topics Covered

The University of Texas MD Anderson Cancer Center - Diversity Issues; Overview; Definitions, Explanations, Translations; Women and Diverse Populations in Healthcare and Institutions; The History of Health Care, Patient Care; On Care; Offering Care, Compassion, Help; Professional Practice

Transcript

Tacey Ann Rosolowski, PhD:

Mm-hmm. Mm-hmm. Tell me a bit about the problem that this initiative was designed to address. What is the situation, or what was the situation, healthcare inequity for African Americans at the time, and how have you seen that evolve over the years?

Lovell A. Jones, PhD:

Well, I think the initiative was to bring the community in, to have community voice at the table, and have it in an equitable manner, and I think it did achieve that, and you see the remnants of that in terms of college programs, you see it in terms of different organizations and national groups that have come together to heighten this. You see the visibility of community-based participatory. You see it now spread in other populations, including-and at one time, Anderson, I chaired-which was funny. I was the P.I. for the Asian American Health Initiative in the Southeast Region-Southwest Region of the county. So I would go to all the meetings, and I would be the only non-Asian sitting around the table. I was the P.I. But the group told me I was an honorary Asian. Since I told them the story of the honorary Native Americans, it meant I was an honorary Asian. (Rosolowski laughs.) So to some extent, that's why I have a lot of inroads in the Asian American community, both here in Houston and across the country. But I think that was a key element, is to set a pattern and a mechanism by which you can have community engagement and have it on an equal plane. There are probably a lot of things that came out of it, but I think that was my chief goal, and has always been, to have that voice. It's like we were saying at the meeting, the summit earlier this week, whatever you do in terms of addressing the need of a patient, you have to think from a patient's perspective, because if you don't take it from that perspective, whatever you put in place may or may not work, and in most cases may not work. And the same thing with regards to community and the same with regards to individuals. If you're going to address their health needs, you have to take it from their perspective. If you don't, then it's like what happened here in Houston in terms of designing a center for a health clinic for prenatal care and designing it in an area where most of the women were over the age of fifty. You never sampled the community in a way that determined that most of the women were over the age of fifty. And that's the disconnect.

Tacey Ann Rosolowski, PhD:

What are some of the ways in which there is a disconnect and a gap between the patient, the African American patient's perspective, and the perspective of healthcare institutions?

Lovell A. Jones, PhD:

You make certain assumptions, and it probably crosses all patients, but it varies in terms of culture and background, and also comes not perfectly, but with regard to racial concordance and the level of trust, that you see someone who looks like you, you assume, rightly or wrongly, that that person has some historical background that will make them understand your needs in terms of your care needs. This has no racial connotation to it, but just to give you an example, because it comes to the perception that black patients are difficult and that's why you don't want them to enroll in clinical trials, because they're not going to follow the regimen and therefore you're going to lose them and you're going to lose the number, and your papers are based on the numbers that you get to complete the study, and so forth and so on, and therefore you don't get the paper published, and therefore, because you don't get the paper published, you don't get the right number of publications, and therefore you don't get the right number of publications, you don't get promoted and you don't get grants and so forth. So it kind of escalates up the chain. So in your mind, they're going to be bad patients, "I'm not going to make an effort to enroll them," and therefore it's self-preservation. There was an individual in the follow-up study we were doing that was related to increasing enrollment of minorities into prevention efforts and then into treatment in five diseases: breast, prostate, colorectal, cervix, and GI. Did I say colorectal? Colorectal, breast. Lung, that was the other one. So those are the five: lung, breast, prostate, colorectal, and lung. So this individual, we had gotten him enrolled. And to the credit of the physician, I have to say, too, he got it. We talked to him. He got it. That was this individual that the staff did not want to be enrolled because they realized that they didn't pre-program to get this individual in a clinical trial. And in actuality, he ended up being a difficult patient in the clinical trial. He was labeled a difficult patient because he was a diabetic, and one of the exclusion criterias was uncontrollable diabetes. And they knew when he was enrolled that he had prescriptions for insulin, but his diabetes wasn't controlled. And they accused him of not taking his insulin medication, and he fought back and said, "I was." They got in huge arguments and so forth, and he just refused to listen to them, and so he ended up being what they considered a bad patient. What they didn't realize, and because he was involved in [unclear], because he was involved in navigation of the system that we put forth, what we found out was that he didn't have a refrigerator.

Tacey Ann Rosolowski, PhD:

My god.

Lovell A. Jones, PhD:

So he was taking his insulin medication, but the insulin medication that he was [unclear] wasn't injection because that costs a little bit more than he could afford; it was the standard that needed to be refrigerated. So he left it out and was taking it.

Tacey Ann Rosolowski, PhD:

Right, but it was not working. (laughs)

Lovell A. Jones, PhD:

So we got him a new refrigerator.

Tacey Ann Rosolowski, PhD:

Wow.

Lovell A. Jones, PhD:

He became compliant. It was like, "Oh. He's one of our most compliant patients." I'm going, "Well, you know, he was doing what he said he was doing, and you were telling him he wasn't, and you weren't addressing the issue. That was why he-." So it wasn't him not being compliant; it was other factors that made him noncompliant. So that's with regards to the whole issue of African Americans or others in terms of addressing issues that you may not be aware of that's contributing to the noncompliance.

Tacey Ann Rosolowski, PhD:

And you actually have to think about asking about that.

Lovell A. Jones, PhD:

Right.

Tacey Ann Rosolowski, PhD:

I mean, that goes housing, transportation, those so-called ancillary things you were mentioning earlier.

Lovell A. Jones, PhD:

Right. But it also goes back to the word I use all the time, that, you know, the idea is that one size fits all. Well, you know, it doesn't. We don't have to worry about enrolling them. Every human is the same, and therefore, if we do it with one group of humans-I remember an individual at the NCI Advisory Board meeting giving a presentation (laughs) on this treatment, this new treatment for a disease, and it was really a fictitious thing that he put forth, but he did it as a way of proving a point. And at the end of his presentation, everyone was saying, "This is a drug that we really need to fast-forward in terms of clinical trials and getting it to the public as quick as we can." And he says, "That's great, but what if I were to tell you that the clinical trials to get it to this point were all done in Africa?" And they went, "Oh, well, it needs more study. I think we need more study, because we don't know whether it's going to work in the United States." And his response was, "Well, that's what we do going the reverse way, so what's the difference?" Value. (laughs)

Tacey Ann Rosolowski, PhD:

Mm-hmm. Interesting.

Lovell A. Jones, PhD:

So they didn't think that it was an issue subliminally, but it was until he said, "Listen."

Tacey Ann Rosolowski, PhD:

Right. Hmm. Do you find that those kinds of stories help raise people's awareness?

Lovell A. Jones, PhD:

Sometimes, but most people want to kill the messenger because it's hard to deal with, and it's hard to deal with because-it's like with-when I gave a presentation to the Institute of Medicine group on unequal treatment, my overall presentation was on bias and how bias creeps into medical practice. And several physicians, friends, came up to me and they said, "You called us racist." I said, "No, I didn't." I said, "Did I use that term anywhere in my presentation?" "But that's what you were implying." I said, "No, I wasn't." I said, "I used the word "˜bias.'" We have biases. There are biases in terms of food; there are biases in terms of clothes; there are biases in terms of where you want to live. There's biases-but also human biases as well. And it's not that you have a bias; it's how you utilize that bias. I said, "I have a bias, and society has an impact on me just like it has an impact on you." And I may have told you this story of the four kids coming-four black kids coming down the street to my house with their pants going south, and having the newspaper at the end of the driveway, and then pulling into my driveway, and they were off in the distance, so they were just silhouettes. It was in the evening. And me thinking about whether I would go get my newspaper, and then at the end, realizing that one of them was my next-door neighbor. That's a bias that society puts on you, and it's what you do with it. You know, I took the gamble. I have to admit that my bias was still there when I went to take the gamble to go and get my newspaper. And in the end, I realized that I had almost allowed something that I shouldn't have allowed to overtake my reasoning. And I said, "We do that in everyday life in terms of individuals." Like the white female in the elevator with Michael Jordan, clutching her purse, and he having a suit on that was probably three times the value of that purse. It's just that kind of innate-and her not realizing that initial reaction or coming to terms and saying, "Wow, I shouldn't have done that, Mr. Jordan," or whatever, and learning from that, as opposed to the next time getting in an elevator and doing the same thing. I said to these older ladies who were-we go to Luby's to eat, and I had my grandson with me, and my wife said, "You don't turn it off, do you?" I said, "No." They said, "Oh, what a lovely grandchild." And I said, "Would you say that to him if he was a teenager? He's lovely as a three-year-old, but as a thirteen-year-old, would he be labeled as a thug or a criminal?" It's how you visualize it. It's like with pediatric cancers. Pediatric cancers really have very little-I mean, there's some biases in that sense, but there's very little discrimination in pediatric cancers. You can look at outcomes, black, white, and that sort of thing, but as soon as they turn sixteen, because that's the age that you start looking at them to some extent as adults, there's a discrepancy that comes into play.

Tacey Ann Rosolowski, PhD:

Really?

Lovell A. Jones, PhD:

Yeah. So we don't think about that.

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Chapter 15: Minority Experiences in Healthcare: The Origins of Health Inequity

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