00:17 Bill Kearney: Good morning, welcome to the National Academies. I’m Bill Kearney from the Academies’ Office of News and Public Information. Following an opening statement from our Chair, we’ll take questions from those of you in the room as well as those of you listening in on the web. The briefing will last one hour this morning and we’ll take questions from reporters first, please. If members of the public have questions we don’t get to in that hour, feel free to approach the committee afterwards. They’ll be glad to stick around and take your questions and answer them. When asking a question today, please be sure to step up to a mic and identify yourself and your organization. Same thing if you’re submitting a question using the email form on the web. First, I would like to introduce Susanne Stoiber, the Executive Officer of the Institute of Medicine who will introduce our panelists.
01:15 Susanne Stoiber: Again, good morning and welcome to the National Academies. This morning, the Institute of Medicine is pleased to release “Unequal Treatment” as a report of the committee on understanding and eliminating racial and ethnic disparities in healthcare. The study was requested by the Congress in response to evidence that the quality of healthcare provided to racial and ethnic minorities in the United States is of lower quality than the care provided to white Americans. In response to that request, the Department of Health and Human Services, through its Office of Minority Health, contracted with the Institute of Medicine to conduct the study that will be presented this morning.
01:57 SS: Additional support for the study was provided from the Henry J. Kaiser Family Fund and from the Commonwealth Fund, and we are grateful to all of these sponsors for the opportunity to undertake this important study. The charge to this committee was to assess differences in the kinds and quality of healthcare received by US racial and ethnic minorities and non-minorities. To conduct the study, the Institute appointed a distinguished committee of scientists. Five members of the committee are on the stage today and will discuss and present the report.
02:33 SS: Alan Nelson, Chair of the committee, is a retired physician and former president of the American Medical Association. He is currently a special advisor to the chief officer of the American College of Physicians and the American Society of Internal Medicine. Martha Hill is Interim Dean and professor and director of the Center for Nursing Research at the Johns Hopkins University School of Nursing. Risa Lavizzo-Mourey is Senior Vice President responsible for the healthcare group at the Robert Wood Johnson Foundation. Joseph Betancourt is senior scientist at the Institute of Health Policy and Director of Multicultural Education at the Massachusetts General Hospital. David Williams is a professor of sociology and research scientist at the Institute for Social Research, University of Michigan.
03:24 SS: The committee reviewed an extensive body of research from many fields of science and gathered evidence from multiple sources, including hearings and communications from experts through liaison panels. These sources are detailed in the report. When the committee had completed its deliberations, their report was subjected to the National Research Council review process, which entails a comprehensive review of the draft report by an equally distinguished panel of experts. The committee was required to satisfy all of the questions and criticisms raised by the reviewers before their report became final. The reviewers are also listed in the report. I also wish to recognize the work of the IOM staff who supported this committee in its deliberations. Brian Smedley very ably served as the Study Director, Adrian Stith as Program Officer, and Thelma Cox as Senior Project Assistant. Silvia Salazar, the Edward Roybal Public Health Fellow of the Congressional Hispanic Caucus, and Daniel Wooten, Scholar in Residence of the Institute of Medicine, also provided valuable support to the committee.
04:35 SS: Finally, I should note that the institute also has in progress another study commissioned by the Department of Health and Human Services to provide guidance on the design and content of measures to include in the first national report on healthcare disparities, which will be issued in 2003. We hope that this second report will help to measure national progress in addressing the disparities in health that result in part from the issues that will be discussed this morning. Through these and other studies, we are pleased to contribute to the recognition, acknowledgement and redress of unequal health experienced by racial and ethnic minorities in this country. Alan?
05:18 Alan Nelson: Thank you and good morning. On behalf of the IOM and my colleagues on the committee, I’m pleased to welcome those of you who are here today as well as those who are participating by webcast. In addition to the committee members here at the podium with me, I’d like to introduce doctors Greg Block and Tom Inui who are members of the committee over here, and also the Study Director Dr. Brian Smedley and his staff who were such a great help to the committee.
05:49 AN: First, a little background information. The study was done at the request of the Congress, as has been mentioned. When the Congress asked the IOM to assess the extent of racial and ethnic differences in the quality of healthcare, it also specified that it was to assess disparities that were not attributable to known factors, such as access to care or ability to pay your insurance coverage. We were to evaluate the sources of those disparities, including the role of bias, discrimination and stereotyping at the provider, patient, institutional and health system level. And finally, and very important in the mind of the committee, to provide recommendations regarding interventions to reduce and eliminate healthcare differences.
06:44 AN: Our 15-member committee met five times over the course of a year, reviewed all of the relevant literature, gained further insights from commissioned papers, convened four workshops to gain additional information from the public, and gathered information from focus groups, round table discussions and technical liaison panels. As the committee dug deeper into its work, it became clear that there are many complex sources of racial and ethnic disparities in healthcare, and this fact is reflected in the committee’s findings and recommendations.
07:22 AN: Our key findings include the following: Racial and ethnic disparities in healthcare exist even when insurance status, income, age, and severity of conditions are comparable. And because death rates from cancer, heart disease and diabetes are significantly higher in racial and ethnic minorities than in whites, these disparities are unacceptable. These differences in healthcare occur in the context of broader historic and contemporary social and economic inequality, and persistent racial and ethnic discrimination in many sectors in American life.
08:00 AN: Many sources, including health systems as a whole, healthcare providers, patients and healthcare plan managers, contribute to racial and ethnic disparities in healthcare. Bias, stereotyping, prejudice and clinical uncertainty on the part of healthcare providers may contribute to racial and ethnic disparities in healthcare. While indirect evidence from several lines of research supports this statement, a greater understanding of the prevalence and influence of these processes is needed and should be sought through research. And finally, racial and ethnic minority patients are more likely than white patients to refuse treatment, but differences in refusal rates are generally small and minority patient refusal does not fully explain healthcare disparities.
08:50 AN: The committee devoted a great deal of attention to making recommendations that might be expected to reduce and eventually eliminate disparities in the United States. It finished its work convinced that the real challenge lies not in debating whether disparities exist, because the evidence is overwhelming, but in developing and implementing strategies to reduce and eliminate them. The existence of healthcare disparities is still largely unrecognized. Public and professional awareness is an essential starting point for efforts at reduction. And the committee therefore recommends that steps be taken to increase the awareness of racial and ethnic disparities in healthcare among providers, the general public and other key stakeholders.
09:39 AN: The committee was persuaded by the evidence it gathered that disparities can partly be attributed to a complex, often fragmented and economically-driven healthcare environment. A number of legal, regulatory and policy interventions are indicated. Because a disproportionate number of minorities are in lower-end healthcare plans, the committee recommends avoiding fragmentation of health plans along socioeconomic lines and strengthening the stability of relationships between patients and providers in publicly funded health plans. The same managed care protections that private HMO enrollees have or would get under a patient’s bill of rights should be accorded to publicly funded HMO enrollees as well.
10:29 AN: In addition, racial and ethnic minorities among US health professionals are underrepresented and need to be increased. This echoes recommendations made in previous IOM reports. And more resources should be given to the Office of Civil Rights within the Department of Health and Human Services to investigate and enforce civil rights violations. The committee recognized that disparities can be reduced by ensuring that clinical practices are uniform and based on the best available science, by providing incentives to doctors to encourage the use of preventive services such as flu shots, cancer screening and immunizations, and by enhancing the quality of communications within the healthcare system. A number of recommendations are directed toward such strategies.
11:20 AN: The consistency and equity of care should be promoted through the use of evidence-based guidelines. Payment systems should be structured to ensure an adequate supply of services to minority patients and to limit provider incentives that may promote disparities. Communication and trust between patients and providers should be enhanced through financial incentives for practices that reduce barriers and encourage evidence-based decision making. The use of language interpretation services should be promoted where community need exists. And finally, the use of community health workers such as non-medical personnel who help patients navigate the complex healthcare system, as well as multidisciplinary treatment and preventive care teams should be supported.
12:08 AN: The committee agrees that disparities also may be reduced through better patient education and empowerment and recommends that education programs should be implemented to increase patients’ knowledge of how best to access care and participate in treatment decisions. Also education programs aimed at current and future health professionals should integrate cross-cultural education into the training. Better data collection is necessary in order to track the nation’s progress in understanding the causes of disparities and reducing them. The committee was very aware of the concerns about patient privacy and confidentiality. Nonetheless, better data are necessary to know where we are and where we are going.
13:00 AN: The committee developed three recommendations with respect to data collection and monitoring. First, collect and report data on healthcare access and utilization by patients’ race, ethnicity, socioeconomic status and, where possible, primary language. Second, include measures of racial and ethnic disparities in assessing provider performance. And third, monitor progress toward the elimination of healthcare disparities for our nation. Confronting unequal treatment, reducing racial and ethnic disparities in healthcare will require a broad and sustained commitment from those who provide and finance care, as well as those who receive it. We hope that our recommendations to understand and eliminate disparities are embraced. As one of our workshop participants observed, “We are all in this together.”
13:55 AN: My colleagues and I will now take your questions. Those in the room, please be sure to step to a microphone. Whether you are here or participating over the web, please be sure to identify yourself and your organization. Thank you.
14:18 BK: Maggie?
14:18 Maggie Fox: Hi. Maggie Fox with Reuters. One of the things you said was this could be attributed to a complex, often fragmented and economically-driven healthcare environment. Can you explain that a little more simply, please? Are you basically saying that it’s a profit-driven system and if we had some kind of unified healthcare system these people wouldn’t be falling through the cracks so badly?
14:41 Dr. Risa Lavizzo-Mourey: I think that the committee reviewed a number of studies and the evidence is clear that minority patients are often in plans where the access to the same provider, consistency of care, is much more limited than in higher-end plans. That kind of fragmentation and the lack of relationship between the patient and the provider certainly contributes to the kind of disparity that we see here.
15:16 BK: That was Dr. Lavizzo-Mourey, to remind the participants to identify themselves for our web audience. Sheryl?
15:22 Sheryl Stolberg: Yeah, I’m Sheryl Stolberg from The New York Times. I think many Americans know that there’s what we’ve called a race gap in healthcare. And so I’m hoping that for the benefit of lay people you could talk about what makes this report or these findings new and surprising to you.
15:41 Martha Hill: This is Martha Hill. The majority of the previous reports have focused on issues about access to care. This report focuses on people who are already patients, they’re already in the door, in the system, being diagnosed and treated for some condition or receiving preventive services. So we think that gaps that exist in the healthcare system have not been highlighted as much. And that we think it’s important to bring this to people’s attention, and to begin to address solutions and strategies to reduce these differences.
16:12 SS: And then as a follow-up… Oh, I’m sorry.
16:14 AN: I think another reason why we think our report is both important and unique is because it covers the breadth of disparities and the evidence that relate to them. Other published studies may have dealt with cardiovascular disease or with cancer or HIV/AIDS, but our report covers all of the available important evidence, from preventive services on one end to pain management on the other end and everything in between. And having all of this evidence in one authoritative source, I believe, will be important in increasing the awareness and consciousness of the magnitude of the problem.
17:00 Dr. David Williams: I wanted to add also that this report is not just for the American public, it is in fact a wake-up call for every healthcare professional, because the healthcare professional community in the United States is unaware of the extent to which these disparities exist and exist across such a broad range of medical procedures. So we have a healthcare system that’s a pride of the world, but this report clearly documents that the playing field is not level.
17:26 BK: That was Dr. Williams speaking.
17:28 SS: Can I ask a follow-up?
17:28 BK: Yes.
17:30 SS: A follow-up would be, you state that mortality is affected, that these disparities lead to worse outcomes. And I just wondered if you could be a little bit more explicit in citing how much worse.
17:48 Speaker 9: I’ll take that. We looked at the preponderance of evidence which suggests disparities in a variety of diagnostic and treatment procedures, which would allow us to draw certain very clear conclusions about health outcomes. There’s no way through the evidence that we have to date that we could identify per year or per every 10 years excess mortality in minority populations. I will refer you, though, to two articles that are in our report, one by Peter Bach done in 1999 at Memorial Sloan Kettering and one by Peterson et al at Duke done in 1997. Both of those studies very carefully control for a variety of factors and look at excess mortality due to the procedures they studied not having been done in certain populations.
18:35 S9: And let me just expound on that for a second. If you look at Peter Bach’s study in the New England Journal of Medicine in 1999, he looked at racial differences in lung cancer treatment. He identified Blacks and Whites with non-small cell lung cancer, a treatable, curable condition. He looked at both African-American patients and white patients and whether they got this procedure. In fact, he saw that African-Americans received the procedure significantly less. The African-American patients who did receive the procedure had the same mortality rate as the white patients who received the procedure. He shows another curve which highlights that the excess mortality for this condition can be very clearly linked to those patients not having received a curative procedure that is evidence-based. That is one example there of excess mortality.
19:27 SS: Thank you.
19:29 BK: Okay, we’ll stay on this side of the room and…
19:31 Tony Pew: I’m Tony Pew, I’m with Knight Ridder newspapers. I was wondering if you could kind of go over what the current shortcomings in the health reporting standards are right now that make it so difficult to compile good numbers on the actual problem out here, and also whether or not you feel the AMA has gone far enough in asking its membership to address this issue?
19:58 DL: I think one of the key findings in our report is that there is clear evidence that there are disparities that exist, but there’s also clear evidence that most of the data rests in the African-American population. And that is because for many of the other ethnic and minority populations in this country, we don’t have good data. The OMB standards for recording and collecting racial and ethnic identifiers are not complied with for the most part, which makes it difficult to track these disparities and to document these disparities in the vast array of minority populations that we have. So one of the key findings of our report and recommendations that flow from it is that we need to have better data collection to both identify problems and, more importantly, to monitor and redress them.
20:55 DL: Your second question… Any of the other members of the committee wanna…
21:01 AN: I think that almost all organizations can devote more attention to this problem, and it’s one of the important recommendations. Our first finding is that we have a need for broader awareness, not only among professional organizations and practitioners, but also among the public. There is a need for more attention for accrediting agencies to collect data on disparities and equality assessment activities that they conduct. And one of our recommendations is that those entities such as the Joint Commission and NCQA devote more attention. Finally, while institutions and organizations or, pardon me, entities such as Medicare are collecting data according to race, many practitioners don’t collect any of those data. We understand the concerns about confidentiality, privacy, unfunded mandates and all of the reasons why there are concerns around data collection, but the committee believed that the first priority should be to provide enough information that we know what’s going on and we know what is being accomplished.
22:25 TP: A follow-up if I could, Doctor…
22:30 DL: Lavizzo-Mourey?
22:32 TP: Yes. You mentioned that the OMB standards are in place but weren’t being complied with. Are you saying that the standards that are there are sufficient, but they’re just not being followed or that new standards need to be imposed?
22:46 DL: The committee recommended that socioeconomic status is an important variable to collect in order to more fully understand this, and primary language. And those are important in being able to dissect the socio and economic factors from racial and ethnic factors. So I think that the difficulty is a combined one. We are not always consistent in electing the racial and ethnic identifying material, but we also need to go further than that if we’re really to understand the problem.
23:21 DW: I would also like to add, this is David Williams, that the OMB standards are minimal standards, and that it’s really important to understand the variation that exists within each of the racial and ethnic categories of the OMB standards. So it’s important to look at subgroups of the Asian population, and the Pacific Islander population, and of the Latino population, and of even the Black population and the White population. They’re important subgroups that we need to attend to as well.
23:46 TP: One last question, you mentioned that there’s unawareness in the healthcare community about these disparities. Would you also say there is denial?
23:56 DL: This is Risa Lavizzo-Mourey. I think that these findings are understandably going to be very troubling for people within the healthcare community. The committee’s report and the evidence we’ve reviewed suggests that physicians, healthcare providers, nurses go into the healthcare professions with good intentions and to try to help their patients. And yet the evidence does suggest there is unequal treatment. So I think that these are gonna be troubling, but the first step to making a difference here is an honest discourse, and then addressing these very broad and complex issues with the recommendations that the committee has made.
24:39 AN: I’d have to say that within the committee itself, we were amazed, some of us were surprised and shocked at the extent of the evidence supporting disparities. I think we may represent a sample of the provider community. I didn’t see denial, but I saw surprise.
25:00 BK: Okay, sir?
25:01 Dr. Carlos Rodriguez: My name is Dr. Carlos Rodriguez. I’m with the American Institutes for Research, I’m a principal research scientist. The first thing is to thank you for moving this agenda forward. Some of us had been looking at this issue for a while and researching it, and we need this distinction. There’s an important distinction that you make which is not available in literature, which is a new contribution for those who study this, and that is to draw the distinction between system level issues and patient-provider issues, because those are both very comprehensive issues that have to be addressed.
25:33 DR: I’d like you to get down to one issue and to elaborate on it. It’s you’re finding that, I know does not suggest although the wording would seem to suggest, that there’s an equal weight to stereotyping, bias, prejudice, and clinical uncertainty. And I know that you don’t suggest that there is an equal weight to those issues. But I’d like you to discuss them because I think it would inform our understanding of the weight of bias, prejudice, stereotyping and clinical uncertainty, particularly if clinical uncertainty means error or a lack of trained personnel who know how to deal with minority populations. Thank you.