Dr. Mark Litwin Video (Text Version)
Title of Talk: Caring for California’s Uninsured with Prostate Cancer
Natasha Kyprianou, PhD, PCRP Integration Panel Chair:
It is my honor to introduce the second keynote speaker for this evening, Dr. Mark Litwin.
Dr. Mark Litwin is a Professor of Health Sciences and Urology at the University of California in Los Angeles School of Medicine and the School of Public Health in California. Dr. Litwin is a visionary urologic surgeon, a charismatic teacher, a skilled epidemiologist, and a passionate patient advocate. He’s pioneering research for the last 15 years specifically focused on health policy issues, providing prostate cancer care to low income uninsured men, assessing the epidemiological burden of urologic diseases in the United States and evaluating the quality of life of prostate cancer patients after treatment, an extremely significant issue in prostate cancer research.
Dr. Litwin received his MD from Emory University and his Master in Public Health from UCLA. He was trained in Urology Surgery at Harvard Medical School at Brigham and Women’s Hospital, and he’s been an outstanding academic urologist. Dr. Litwin is a member of the American College of Surgeons, the American Urological Association, the American Medical Association, and the Society for Urologic Oncology. He has received many awards including the 2001 recipient—was the recipient in 2001 for the Gold Cystoscope Award from the American Urological Association, the highest academic honor that the society offers to its members.
He also received in 2007 the Franklin Murphy Prize for Research demonstrating innovation and leadership from the Stein Oppenheimer Foundation. And last year, he received from the American Urological Association Foundation the 2010 Distinguished Mentor Award. Dr. Litwin besides his very busy clinical practice and mentoring the young investigators has created and directs the other IMPaCT component standing for improving access, counseling, and treatment in Californians with prostate cancer, a program that provides free prostate cancer care statewide. Tonight, it is a pleasure and an honor to welcome Dr. Mark Litwin to discuss his extraordinary work about caring for California’s uninsured with prostate cancer—Dr. Litwin.
Mark Litwin, MD; Professor of Health Sciences and Urology, University of California, Los Angeles School of Medicine and the School of Public Health
Thank you very much; Captain Kaime, Captain Daniel, Dr. Best, Drs. Miller and [Linvosser], Dr. Kyprianou, Mr. Sholes, fellow scientists, fellow clinicians, fellow cancer survivors, we’re going to take a trip to the opposite side of the galaxy at this point. The advancements of medicine hinges on the translation of basic science research into clinical science research and ultimately into the population sciences. I would hazard a guess that most of the scientists in this room are familiar principally with the basic sciences and the clinical sciences. The world I live in is in the far right, the population sciences, and if you’ll humor me for the next half hour or so I’d like to take you on a journey through the world that I live in—in the population sciences, and if you will the translational population sciences in which we try to collect issues surrounding access to care, quality of care, and cost of health care with a constant tug and a constant push from health policy circles, health politic circles, and everything in between.
Let me start by introducing you to something that is an extraordinarily prevalent problem in the United States. Among—across the 50 states of this country, the percentages of low income, uninsured adults are staggering, up to—up to 50% in some states. You see I have my own state of California highlighted at 47%, but these numbers are very significant in fact served as the basis for much of the advance—advance in health care reform that has been played out over the last couple of—couple of years.
Among the non-elderly uninsured there is quite a diversity across the racial ethnic groups, Latinos in this country being particularly affected in recent years. And if you look at household income, the lower the income the more likely the family is to be uninsured. And you can see here that the percentages, the proportions of low income families who are uninsured are quite significant. In the state of California, this is also true throughout our 58 counties, and if you look across the numbers up and down the numbers here you don’t see any 2% or 3% or 6%. The best county is maybe in the neighborhood of 15 to 20% uninsured by county across the state of California.
So this is a trajectory that the nation has been on for quite some time and it’s not headed towards a happy place. Unfortunately, that trajectory collides with another one, which is the incident of prostate cancer in the state of California. And you could redo this map for basically any state in the country. When I visited Dr. Kyprianou’s institution last summer in Kentucky, I showed a similar slide in that state, the counties of Kentucky as well. But you see that depending on the racial ethnic background or demographic of individual counties, there are hot spots, beds if you will of prostate cancer throughout the state of California. And this represents all 58 counties in—in the—in the state of California. So that’s kind of the background of these two colliding trajectories that we’re set on—on an unfortunate course.
As Dr. Sharp will probably tell your or any of his fellow Nobel Laureates will tell you, in science the advancement of—of any field within science is dependent as much on—on serendipity sometimes as on careful planning. And serendipity is certainly what led to the journey that I’m about to take you on that I’ve been on for the last 10 years or so. And it all started with a call that came in from Sacramento, which is our seat of government in California to my Chair of Urology, John [Dekiernian] in the fall of 2000. And the call said, the Governor—this is two Governors ago now for us in California; the Governor wrote into his budget for fiscal ‘11, $50 million for the care of low income, uninsured men with prostate cancer. Could you guys do something with that? Could you create a program for us?
So my boss walked down the hall and handed the letter to me and said Mark, could you do with $50 million? Well there’s really only one correct answer to that question. And—and so began this journey, this diversion away from the scientific course that I had planned out for myself in having joined the faculty at UCLA in Urology and in Public Health a few years—a few years prior. So after—after much consternation and much discussion back and forth between myself and colleagues at UCLA and some of the other University of California Medical Centers, and the powers that be in Sacramento where the money was being—being rained down from, this being a very different financial time, we ended up initiating, signing a contract which at the time was the largest single contract that the UC system had ever signed, not surprisingly. We signed a contract with the state of California for $50 million to create a 3-year demonstration program. And the 3-year demonstration program was meant to be a bells-and-whistles enterprise in which we would seek out and do outreach to and educate and provide treatment for low income, uninsured men with prostate cancer throughout the 58 counties in California.
This is not something that I had been trained to do. I had training in—in Public Health but it was mostly in Health Services Research and yet it was something that—that spoke to me at a very—at a very you know emotional level obviously. And the money of course didn’t hurt either. And so my boss told me at the time once we signed this contract, he said let me give you one piece of advice. Don’t get used to it because you know I’ve—I’ve been around a long time and this kind of money doesn’t last for—for that long, so do something great with it. Do the best you can; get the best you know work out of it that you can but just don’t—don’t get used to it.
Well over the next several years, we have been very fortunate to have this program renewed multiple different times despite the extraordinarily difficult financial times in California and now many other states today are—are going through. Our most recent renewal came this past Friday for $9.3 million for the next 3 years of the program, largely because of the work of the advocacy community in California in prostate cancer, one of the organizations for which—of which—which has worked the—the most—the most hard on this has been for many years chaired by Wes Sholes, the California Prostate Cancer Coalition. But that organization and others with many central players, central characters helping out have been able to go to the State Legislators in California alongside the scientists, the public health scientists, in really what is in some ways a model that is not too dissimilar from the science and advocacy coalition that’s been created in—in this—in the DoD Program in prostate cancer here.
But—but in any event the money has—has kept coming. Now $50 million over 3 years is a lot different annual budget than $3 million a year which is what we—what we are working now but it’s still a significant amount of money, and we have been able to do a fair amount of good with it and that’s what I want to talk to you about.
One of the ways that we got the program up and running—what we call our IMPaCT Program and you see what it stands for there, one of the ways that we got it up and running as fast as possible was to use the backbone, the infrastructure logistically of the University of California Health Systems. There are five hospitals within the University of California—UCLA, UC Davis, UC San Francisco, UC San Diego and for—for a variety of reasons UC Irvine chose not to participate—but four of those five got together and using our backbone, our logistical infrastructure, we were able to get this program up and running really, really fast. So that we signed a contract with the state for the initial—initial budget on April 1, 2001, and we enrolled our first patient in July 2001, which is pretty lightning speed.
One of the critical principles though of the program is that the patients are not treated in the University System unless they choose to. By and large, 95-plus percent of the patients are treated in their own communities throughout the counties of California. I’ll come back to that in—in a little bit.
The program was built on the principles that dual pillars of both—optimizing both access to care and quality of care and it’s difficult to optimize both at the same time because if you raise access you end up allowing providers into the system who may not meet the quality thresholds that we want and conversely if we raise the quality thresholds too high there’s not enough access to providers. And so it’s a constant tug to maximize both access and quality, and those two pillars support the main missions of the program, which is to treat men with prostate cancer, to educate men with prostate cancer and their loved ones, and to do outreach to men with prostate cancer and to the communities in which they live. And that’s largely been what we’ve spent our time—what we spend our time doing.
The eligibility for the program were—were given to us by statute. Patients had to live in the state of California; there was no specific commentary about documentation, documented versus undocumented residents, and so we take all-comers who live in California with an annual household income of less than 200% of the Federal poverty level and you can read the amount there of what it is currently. They had to be uninsured, meaning that they were ineligible for insurance, meaning that they couldn’t be into the Medicare age range and be eligible for Medicare; they could also not be eligible for Medicaid, Veterans Benefits, anything else. Really the—the people who we refer to in public health as those who would otherwise literally fall through the cracks of society; many of the people who are meant to be helped by the Affordable Care Act passed last year by—by Congress. So these are the eligibility criteria for the program.
And once a man screens in as—as classified as being eligible for the program, the world opens up to him at least in terms of prostate cancer care. And this is just kind of a partial list of the many services that we offer at zero out-of-pocket cost to the patient, literally zero—initial consultation, all in-patient and out-patient services, any of a number of different treatment options for prostate cancer as appropriate for that individual. There’s access to clinical trials, if the patient gets that far along on his—on his clinical trajectory, diagnostic testing in terms of scans, x-rays, laboratory profiles, et cetera; care in not only the tertiary care facilities if that’s where he chooses to be treated, but also in his own community hospital and by his own community—community provider. We have counseling services and we—we fund a number of mental health—mental health services and providers as well; medications as they relate to prostate cancer; but really despite all these individual medical services, the program is built on the principle of nurse case management.
And one of the first things I did was to recruit the help of—of one of the things they teach you in medical school is that if you’re really smart, you know to surround yourself by smart people. And usually for physicians that’s nurses. And one of the things that I did early on was to recruit the help of two particular nurses, one a public health nurse, the other a nurse scientist, the—the RN NPH Barbara [Klerkin] who I recruited and someone I had worked with in the past and the nurse scientist, RN PhD whom I recruited, Sally Maliski who is an awardee of this program and in the audience tonight—sat down and put together a nurse case management program in which the principal thrust was going to be patient self-empowerment, improving self-efficacy with the idea of being that once a man had come through the program, our IMPaCT Program, once he graduated hopefully cured of cancer or at least with cancer in abeyance that he would be able to take the lessons learned from having dealt with cancer with our assistance and—and convert those to later in life when he was faced with some other condition, perhaps heart problems or other things related to old age. Patient self-empowerment, patient self-efficacy and so we built the program around communication. You see who is at the top of the apex of the pyramid there; the patient, the nurse case manager at one end of the foundation and the IMPaCT physician at the other end with communication all around. And that’s one of the principal things that we’ve been able to utilize—interactive technology to do as well as just old-fashioned, old-fashioned telephones.
The nurse case manager then which is assigned—who is assigned to every single enrollee in the program coordinates all these referrals to the various services that the patient may need, not only the doctors involved, but also the inpatient facilities, pharmacy, labs, mental health counseling. We had for a long time a dietician who was on the full time staff of the program creating cookbooks for different ethnic—with different ethnic outreach groups, visiting nurses, social services, health education, access to clinical trials usually in the UC System but elsewhere as well and then ultimately of course if the need—if need be for hospice care.
Patient My nurse case manager has been a god-send to me. She not only helped me with the—the medical side of it but she helped me psychologically and she—she truly seems to really care about the patients and I don’t know whether I could have made it without Sarah or not, to be honest with you.
Dr. Mark Litwin
One of the things we did when we first started the program was to try to put together a series of educational materials, written educational materials, and we didn’t want to reinvent the wheel, and so we started by doing kind of the biopsy, what was available in terms of medical—prostate cancer related, medical educational materials for men? And there was a plethora of them around; some of them good, some of them great, some of them not so good—virtually every single one however was written at about the 14th grade level and it had graphics filled—and it was filled with graphics that really did not speak to the populations that we were interested in reaching out to. The typical graphic in one of these high level, highly sophisticated publications would have typically an older—an older white couple sort of the silver-haired fox type of the guy with his Brooks Brothers jacket on the ninth green walking arm and arm with his equally silver haired wife and the—and the Laura Ashley sweater tied around her neck and it’s really sweet and it reaches the affluent white population but doesn’t do much to reach out to the minority communities that we were looking at it. And so we put together a series of community-based advisory groups of men from the Latino community, African American men, Korean American men, Russian American men—you name it, anyone who we were reaching out to we put together a community advisory board for and sought out their advice. What is it that speaks to you? The content of the information is basically the same. But how do we present it to you; how do we wrap it to make it speak to you?
Patient
They found the radiologist; they did everything for me. They even found one in the area that I could get to.
Dr. Mark Litwin
As—as more of the—the products of our program became available we put together a website to make it—to make it available to anybody else who wanted to access it. And everything we ever developed in the program, of course it’s government funded and it’s completely free and it’s accessible to anybody and I emphasize that our—our website on pretty much every slide here and you know you’re encouraged to go to it and sort of check out the things that are available there, but this is just an example of the front page of the website and sort of you see who the pictures are, who the faces that are in—that are in the program. It’s got information on eligibility, who patients can call to get enrolled, et cetera. But we also put in there all of the materials, all of the educational materials that we’ve developed over time for people to download and—and use, a number of different brochures and I’m going to tell you a little bit more about some of those in a moment but they’re all there for anyone to—to use.
This is just an example of one of the—one of the kind of basic level educational materials that we put together. This one is obviously in English; we put them together for various different communities. This brochure here has the exact same information, but it is self-evident that it is meant to reach out to a different population.
This is the one that’s meant to reach out to our Latino population in California, again the exact same information carefully translated but just written and decorated in a different way. One of the things—this is our Russian brochure. One of the things I learned—we learned that was kind of an ironic lesson from one of our community advisory boards was that in many of the Asian communities whom we serve in California, color has extraordinarily important symbolism. And we had to hold the presses as we were about to go out with the production of this particular brochure when our—when our community based advisory board and our Korean group said no, no, no; you can’t print that. The colors you’ve chosen to decorate your brochure are the colors of death in our community. I didn’t know they were colors of death. But this is—this is an example of how it’s so important to come back to the patient. And again it ties in with one of the fundamental principles that the—the DoD Prostate Cancer Program subscribes to which is to marry together the interests and the perspectives of the patients with the doctors with the scientists. So we learned that—another example of one of our—one of our materials that’s there.
We also developed a number of different audio materials. And many of our patients have literacy issues, so that even when we aimed our materials at the sixth or seventh or fifth grade levels it just wasn’t—it wasn’t good enough. And so we had—we got a parallel grant from another funding source to develop many of these into audio materials as well.
Audio Material
This recording is part of the IMPaCT Program’s Prostate Cancer Patient Education Series. This series is funded by the California Department of Health Services. Controlling Pain, Part Three, Generic Versus Brand Name Medicines; before we begin it is important—.
Dr. Mark Litwin
So there are—there are literally dozens of these kinds of audio files that are—that are there. And they get very, very specific. My personal favorite is Managing Hair Loss.
Audio Material
What will you learn by listening to this recording? When you have chemotherapy to control your prostate cancer you may have side effects or unwanted changes in your body. Side effects are different from person to person and may be different from one treatment to the next.
Dr. Mark Litwin
So these are available in English; they’re available in Spanish and patients can download them and just listen to them at the library or on their own internet access at—at home. One of our concerns early on was would our population of interest have access to the internet. It turns out yeah; they do. It turns out that they have really good access to the internet and just because you might not have a Wi-Fi hot spot in your own apartment, it doesn’t mean that you don’t go to the library and people—people access the internet very, very readily and today especially with the generation—generationally with smart phones and whatnot that the you know—that the kids all have of the patient, they really do access the internet a lot, so all this stuff is available for them. Nonetheless, we also have audio CDs that we mail out to them depending on what the particular need is and again this is just, you know one or two screen shots of some of the many—of many products that are available as part of the—as part of the program.
One of the hooks for me as a researcher, as an academic though was not only creating a public health program where we could really you know try to do a lot of good throughout the state of California but was also to conduct research and to conduct health services research. And this is a partial list of some of the topics that we have spent on resources, researching within the IMPaCT Program, quality of life, quality of care, outcomes, medical outcomes of care, access to care. I’m going to share a few examples with you of these in a moment—spirituality and how that impacts outcomes of care, health behaviors such as alcohol and tobacco use and how those interact with patients’ experiences in having had prostate cancer. Prostate cancer knowledge, you know how much the patients know about what they’ve got and how much should they know? Do they tell their first degree relatives, their brothers, their sons about prostate cancer and about the increase risk that they may be—may be at as well as a variety of demographic variables?
And again on the—on the IMPaCT website there are about 30 or 35 publications now that are out you know in the cancer literature, in the urology literature, the public health literature, the psycho-social literature, and elsewhere where you know we try to put this—try to put this message out. These are just three examples; one on—on health policy, one on the quality of care that was—that was first authored by a researcher named Tracy Krupski who is a DoD Prostate Cancer Program awardee, another by Sally Maliski, again one of—one of the two nurses who helped create the program when it began, who was also an awardee and who is in the audience tonight. But what I want to do is, I want to take you through a very brief tour of three other of the research outputs, three other papers from this—from this—from the IMPaCT Program that I think you may find of some interest.
This one is on the severity of prostate cancer. One of the observations that we made was that in the majority of population over the last 10 to 20 years probably partly because of widespread PSA screening but other reasons as well, the—the severity of prostate cancers that have been diagnosed has gotten milder. In other words, we’ve seen what we call in—in oncology a stage migration and a risk—risk migration which means that the men who are diagnosed in 2011 are more likely to be diagnosed with a lower risk, lower stage cancer than those who were diagnosed 10 years ago, 15 years ago. But one of the things that we noticed that in men enrolled in the IMPaCT Program that just wasn’t the case. We were seeing as many men come in at—at diagnosis with horrible metastatic disease with really severe cases, high-risk tumors, metastatic to the eyeball, to the scalp, to the liver, just you know the horrible, horrible sorts of cases that you just don’t see that much anymore but we were seeing them. And so we wondered was this just an informal observation or was it actually true. And so we—having had now almost 2,000 men enrolled into the program have the luxury of having really great sample sizes to do statistical analyses of this kind and so we just posed that question—compared to the—the community-based samples that had been published are the men in our IMPaCT Program more likely over the last several years to have high-grade tumors or to have metastatic tumors at diagnosis? And I just picked two slides from the results of this paper and if you’re interested you can pull the reference. It’s available on the IMPaCT website and look at it yourself, but what you see there is it’s showing you the percentage of men both in our program and in community-based samples who have higher intermediate risk tumors, the really bad tumors. And you see that—that in the community it kind of leveled off; it used to be higher but it leveled off down around 40%–45% whereas the men who are enrolled in this program over the last several years it just keeps bouncing around up around 70% or 80% with high-risk tumors. And what it has said is that there’s something either biologically different, epidemiologically different or maybe something that has to do with the way that men access care that really makes this group of individuals different.
The same is true with the men who are metastatic at diagnosis. I think the gentleman who opened the video before and it fortunately is relatively uncommon. It’s not unseen of course but it’s relatively uncommon today to be metastatic at diagnosis unless you’re in the IMPaCT Program, unless you’re one of the men who is from a chronically historically underserved community and if you’re in that community for—for biological, epidemiologic or many reasons, you’re more likely to end up with metastatic disease when you’re first diagnosed, present with a PSA of 39 or 390. So the policy implications, all the researchers who work with me have to have specific policy implications from their work—is that the men we’re meaning to serve, the underserved minority populations have not unfortunately enjoyed the same stage migration and risk-grade migration that the more affluent majority population has seen. And that probably timely access to high quality care is at least one of the critical pieces that helps get men into you know a—a course of care where they may hope for cure.
That’s the first of the three papers that I’m going to review. The second is this one and this is about access to care. It’s published in a—in a—in a public health journal a couple of years ago about men who didn’t make it into the program. And I’ll tell you how we came to do this. In the fall of 2004, there was the first of what would subsequently be many deepening fiscal crises in California. And on February 14th, Valentine’s Day 2005, I took a call on my cell phone from the—the—the woman at Sacramento who runs our program or to whom I report in Sacramento. Everybody has someone—has someone higher up. And she said well, we don’t know what’s going to happen with the—with the fiscal ‘06 budget and so we want you to cease enrollment in the program. Wow; cease enrollment, we had never done that—$50 million program renewed a couple of times, we can’t just cease enrollment. Well you have to cease enrollment. Okay; when do you want us to do that? Now—so I said how about we start a wait list so that we continue to screen eligible men and we just tell them all right, you’re—you’re screened in. You have the correct financials. You have the correct diagnosis. You’re a resident. You know you meet all the eligibility criteria but we’re going to put you on a wait list until we get renewed until the program gets reopened again.
And my boss at the state in Sacramento said absolutely positively not. That would imply a commitment and we may not be able to—to honor that commitment. Do not start a wait list. So I started a wait list. Remember that? And fortunately 9 months later the program was reopened and this is what you—your heart has to become accustomed to living with the—the budget machinations every year and the—and the cycles back and forth. I hope there’s no one from the government, state government of California in the room.
But we took this, one of my former Research Fellows, took this as—as an opportunity, a research opportunity to conduct a natural experiment. Obviously we would never have randomized men to either be in the program or not be in the program, you couldn’t do that; it’s obviously not ethical, but we had this natural experiment. We had this 9-month enrollment delay and so we posed the question; I wonder if the outcomes from these men that these men experience is going to be any different than a contemporary group of men who were enrolled into the program at that time? It would be very difficult to show differences in outcomes because only a 9-month delay in enrollment, but we thought what the heck; let’s see.
And so we took the 83 men who were enrolled in the wait list during that 9-month delay and we took 83 contemporary controls and matched them based on age, race, disease stage, and various other things that we wanted to match them on and we looked at a bunch of the measures that we collect, a bunch of the quality of life and access to care metrics that we collect in these patients. And if you’re into this sort of health services research, you’ll recognize the—the letters in the right column. Those are just the names of different surveys that are used to measure these kinds of things that are on the left—mental and physical health, cancer distress, self-efficacy, this all important central goal of this program.
Another thing we looked at was their access to care. Were we actually doing something? Or, were there other kinds of pieces of a safety net that they could access? And so we took some standardized questions that had been validated to ask men do you have access to a doctor or a nurse. Do you have access to a hospital, to medication, to nutrition information, to basic prostate cancer information, et cetera? And you can see there the differences; the yellow are highlighting the men who were contemporarily enrolled in the program and then the pale blue is those men who were delayed, who were denied access to the program for 9 months. And all these are—are—all but one of these are high statistically significantly different. This is a group of men who really would otherwise fall through the cracks and come back to the emergency room you know a year later when really there was not a whole lot that could be done.
The findings then of this particular study were that men assigned to the wait list had worse distress related to their cancer symptoms, worse self-efficacy, worse physical function, mental function, social function, profoundly worse access to really all levels of—of health care that they really needed—they really needed. The policy implications then which we tried to trumpet in Sacramento and it took more flights than I care to remember between Burbank Airport and Sacramento for the day to testify before the Assembly Budget Committee or the Senate Finance Committee or the Assembly Healthcare Committee and I’m standing there in line with the Breast Cancer Lobby and the AIDS Lobby and the Disability Lobby and the Tuberous Sclerosis Lobby and all the rest and it’s really quite unsettling to—to be there doing that except for if you have Westley there with you, you kind of—you kind of feel better about doing it.
But the lesson policy wise is that despite the necessarily cyclical nature of state and municipal and federal budgets is that if you’re going to make a commitment, if we as the public, as the government are going to make a commitment to the underserved in our society then we’ve got to honor that commitment and we’ve got to stay you know—stay on the same page with them. And the public assistance programs particularly for this group of men with prostate cancer really do make a demonstrable difference in their outcomes and into the way they access care.
Third and finally of the—of about three dozen papers that we’ve published from this project I want to share with you, one by a colleague of mine who was a Fellow at the time who is now at the University of Michigan, on access to care. And we asked in particular, for men who have equal access—that is, there obviously is no discrimination based on any demographic on who can be eligible for the program—it’s all based on the eligibility criteria that are principally financial and residential, would we nonetheless still see some disparities, see any disparities in this—in this population.
One of the Integration Panel—I think he’s an Integration Panel Member, Steve Freedland, has done a lot of work in this and the Veterans Administration system where there is also equal access and has found that there actually is disparity based on race and—and ethnic background, not because care is denied based on race of course but because the way the different cultures conceive of health care and accessing medical care just is different from one group to another. And so we—we based it on this model; there’s this sort of famous model called the Andersen Model of Access to Care and Ron Andersen is a Professor at UCLA and he worked with us on this project and his model of the way that patients access care basically divides everything into the stuff on the left side of the blue line and the stuff on the right side of the blue line. You have predisposing factors that will predispose someone to accessed care. You have enabling factors that enable the person to access care. And you see under each of those lists of what some of the examples are and you have need factors, like why do they actually need the care. And then on the other side of the right—of the blue line is their actual accessing of care whether they actually realize the care, do they get the care that they need in the right way and what are the outcomes of that care. And this is kind of the Andersen Model.
And so again, because we have close to 2,000 men who are enrolled in the IMPaCT Program almost of all of whom have agreed to participate in our research endeavors—not 100%—but almost all of them have, we were able to look at some of the—the measures that you see listed below these boxes here and say well, does the stuff on the left predict the stuff on the right? And so we—we took a sample of about 350 men and looked at predictors or determinants of access, predisposing need, and enabling factors and then end points of health care access whether they avoided the emergency room because in public health policy it’s considered a good thing, a desirable thing to avoid the emergency room when it’s not needed and did they get their regular visit. Did they go for their regular PSAs? This is not the controversial part of PSA testing whether it should or shouldn’t be used for screening; it’s noncontroversial in all circles that it should be used as part of follow-up, so did they get it. And so these were two measures of—of the end points of the access to care. And we looked at outcomes as well.
And I have—I have just one or two results slides from this paper as well. In the first set of—of lines there suggests that if you look at these—these odds ratios what that says is that compared to whites, Hispanic men were 65% as likely, in other words, only two-thirds, 35% less likely to avoid the emergency room. African Americans were 43% less likely—even more unlikely to avoid the emergency room for non-emergency conditions. So even though this program was available and everyone got the same care in the program, there are still differential ways that different subcultures in our population access health care. The same thing for whether they’re—there was regularity of their PSA testing, certain health behaviors, such as alcohol and tobacco use, we studied as well and that was a predictor of whether men got the care or didn’t get the care. If the number is less than one, that means that group is less likely to get the care.
Geographic(s) also very important. We have 58 counties in California; some of them are very, very large and have long travel distances, and that not surprisingly had a—was a determinant of whether men accessed care well or not. Whether they were metastatic or not was a predictor; the—the degree of co-morbidity of other diseases that they have was also a predictor. So the policy implications of this paper, and again if you’re interested in it you can pull the actual paper from the IMPaCT website and—and look at it in more detail were that utilization does actually appear to be somewhat inequitable across different racial ethnic groups despite the fact that it’s a equal access system.
Second, satisfaction with care and confidence in the physician, in one’s ability to communicate with the physician—that self-efficacy also varies across different groups based on health behaviors, based on co-morbidity, based on disease—disease stage and based on racial ethnic groups; the same thing with the way that self-efficacy impacts access to care.
Patient
What—what I’ve been taking advantage of is—is the expertise in—in the nutrition aspect of things and the psychological aspect of things because I’ve had some not problems necessarily but I’m sure everyone goes through some emotional depression at times when they’ve had the surgery and I probably—and they probably all are emotional and probably not physical. And so by the time I finish talking to her I kind of feel more relieved about some of these anxieties and things that I’ve been having. So they’ve been very helpful in keeping me afloat.
Dr. Mark Litwin
In the process of running this program, there have been a number of extraordinarily positive events and a lot of extraordinarily positive feedback for me as a scientist, as a mentor for young—young investigators and principally as a physician and as a doctor taking care of men with prostate cancer. And really that’s—that’s got to be for me the most gratifying part of it all. And I’ll tell you one of—I could regale you for the rest of the night with anecdotes but I’ll tell you one to finish on time at 8:30 and that is of a man who very early on in the program had—was enrolled in the IMPaCT Program and he decided to come to UCLA to have his surgery to remove his prostate gland, his prostate cancer. And he came back and I did the surgery. And he came back for his follow-up, his long-term follow-up a few months later and he brought me a watch. He brought me—it’s a Rolex watch. I don’t think it was a real Rolex watch; I’m sure it was a knock-off because I wouldn’t wear a Rolex watch anyone you know with my Toyota Prius; it just doesn’t match. But—but the—the thought was there. And I thanked him very much and it was really sweet and it struck me as a little odd you know why wouldn’t he bring me a box of chocolates, okay; you know maybe a nice orchid—that makes sense, but a watch—why?
And so I asked him and he—and he—he said well, look on the back, we had it engraved. And I’m sure even this knock-off Rolex watch was you know how many days or weeks of his—his you know two job salary he—you know used to buy it but on the back of it, it said Dr. Litwin, thanks for giving me extra time. And you just can’t—you can’t get anything else like that—not a $1 million grant that you get from the DoD, not a $50 million grant that you get from the federal government, not a Nobel Prize in my view would do—is—is quite the same—is quite the same as—as the warm feeling that you get in your heart when someone—when someone does that for you.
And so I would tell you that as consumers or as patients, as survivors and spouses, don’t ever poo-poo the idea of a little note. It doesn’t have to be a watch but a little note because that—I’ll tell you; people save those things and it makes all the difference in the world.
Patient
I think it’s the greatest program in the world. I honestly believe it saved my life.
Dr. Mark Litwin
Thank you very much.