Keynote Address: Finding Our Path Forward for Gastric Cancer … – 2022 Gastric Cancer Summit

[00:00] Now it's my great pleasure to introduce my wonderful colleague Dr. Karen Kim from the University of Chicago. Karen is a force, she's a major figure in public health for the AA and HPI community in our country. She's vice provost for research and chief scientific officer at University of Chicago, also as a professor of medicine.

[00:20] Medicine Associate Director of the Cancer Center and Director of the Center for Asian Health Equity. Karen has so many efforts ongoing and has tremendous responsibilities, but is so universally respected for her dedication and her generosity. So please welcome Dr. Karen Kim.

[00:40] I guess it's good afternoon. First of all, I'd like to really thank Dr. Ko. He is really the reason I'm here because he introduced me to Dr. Huang. I want to thank Dr. Rob Huang as well and care.

[01:00] I'm so excited for all that you're doing on this campus. So I'm going to speak to you today about finding our path forward for gastric cancer control and lessons from the field. And this is not really a scientific talk. This is a little bit about, I guess when you get to be my age, you get to just pontificate and try to share what you think is important.

[01:20] So, you know, bear with me. So I'm going to start by talking about, as my daughter will call it, my villain origin story. How did I get here? I'd like to talk a little bit about the data landscape and maybe end with talking about lessons from implementation science and how we should be thinking about.

[01:40] cancer control. This is my mother. This was in March of 1995. She was giving a keynote address. She was the highest-ranking Asian American in the, or I say Asian immigrant, in the Chicago public school system. She was a superintendent for special education. In fact she

[02:00] started this at Chicago Public Schools. And this is 10 months later at her obituary, Chicago Tribune, in January of 1996. And she died from hepatitis B-related liver cancer, a story that probably many of us have lived through.

[02:20] What was surprising for me was that I had gone through medical school residency and GI fellowship, GI, the area that we treat this disease. I was surprised that nowhere in my education had anyone mentioned to me that there was a disparities in hepatitis B among Asian Americans. So I started to ask for more.

[02:40] And I remember when I went with her to go find some miracle cure, and at that time there was really no good treatment for hepatitis B and you were not transplantable. And I remember one of her doctors telling her, you know, Mrs. Kim, I think you should take a really long extended vacation in China. And I thought,

[03:00] were Korean. And so I thought, you know, there's some big problems, right? And so the reason this is my villain origin story is because it unleashed a wild, wild kind of fiery passion in me to do something important in my mind. I had grown up largely in the African American community, knew very little

[03:20] about being Asian American. I was studying epithelial transport and was really happy in the lab and I thought what in the world am I doing here, doing this type of work when there is so much else that needs to be done and so few people who have the capacity to do it. And so in 1997 I launched Asian Health Coalition with my

[03:40] colleagues. This is a nonprofit organization that's really a capacity-building organization, very much non-direct-serving, but working to support direct-serving community-based organizations in the Chicago region. And unlike California, which is, I think, what, 40 percent of the Asian Americans, I always say the smart ones live in a place with weather like

[04:00] like this. There's really little infrastructure in the Midwest. And so I think these type of organizations are critically important. And to address that interesting comment from that physician, I decided that cultural competency was way to go. And so I started the cultural competency program at the state of Illinois and we trained thousands

[04:20] of people, a lot of providers, hoping that no other family would have to be told to go to a country that they don't belong to while they were dying. I also launched the University of Chicago with my colleague's first health disparities curriculum, which serves as a national model. And actually, when I was

[04:40] working with my colleagues to put this together, I told them and I wanted to talk about Asian health disparities and they were really curious why this would be important because they had not even thought about disparities and these are people who do health disparities research. And so I think again, unleashing the ability to talk about this has been really important.

[05:00] And I think one of the most fun things that I've done in my career is working with these amazing medical students at the University of Chicago who really wanted to launch a limited English proficient kind of Chinese serving free clinic in Chicago. And every year they asked me to start and every year I said

[05:20] said no because as many of you know who work with medical students, this tends to be a first year medical student passion and then they get busy and then somehow you're stuck with it. So there was no way. I was like fool me once I've done this before I'm not doing it again. However, I found the guy all the way on let's see the right of the screen, Phil Shue.

[05:40] who's currently doing surgery residency at Michigan. He was at the very beginning of medical school and he was going to do an MD-PhD program. So I knew that I would have him for many, many years. And it was his brainchild and his passion and he actually ended up launching this clinic. And what's interesting about it is it's the only clinic that many of

[06:00] our residents, faculty, and trainees have an ability to work with limited English proper relations that are not Spanish-speaking. And so we have now really developed a big program with mental health providers from our School of Social Work and residency programs sending their fellows and residents to us. And so it's been really great.

[06:20] And I think as all of you know, just because it's free, it should maintain the same quality. And so we have an EMR record, we have an electronic medical record. It's the only free clinic at the university that has that. And it's really, I'd have to say, a really nice model. But what was becoming clear

[06:40] is that as we grew this Asian Health Coalition non-profit organization, we were at some point starting to compete with the organizations that we were trying to support. And so I decided that we really needed to focus a little bit more on research, and so I developed the Center for Asian Health Equity as an interesting

[07:00] community academic partnership in about five years ago. And that is bringing the Asian Health Coalition under the umbrella of the University of Chicago and together kind of focusing on our four pillars, which is community engagement, research, education, training, and policy. And I thought that bringing a nonprofit into the university would

[07:20] would build the capacity of the nonprofit. But actually what it did was it built the capacity of the university. And I would say over the last maybe two and a half years we've had about $8 million of new funding. And 60% of that funding is going to our nonprofit arm because there is a real thirst and need. I think that you can't really

[07:40] really address health disparities by sitting in front of a computer, you've got to be in the community. And that's, I think, what this allows us to do. And I think people are recognizing this, including federal funders. And so when I think about gastric cancer control, I think about how do we define our evidence base, what and who are we measuring?

[08:00] that in order to have evidence-based data, you need funding. And you already heard from Dr. Wu and others that there is a paucity of funding for Asian health. And on top of that, we're a very diverse population. Howard Koh invited me to write an invited review for Academic Medicine, which we published earlier. And I remember

[08:20] him saying, you know, saying Asian Americans is like saying European Americans and we don't ever talk about people that way. And so I think the ability to disaggregate is critically important. We know again like there's limited funding. I think if you look at the entire NIH portfolio for Asian research it's less than 1%. And only about

[08:40] About 10% of all federal funded data is actually reported. So what are we doing with it? And I think I would also have to say that when we see data, I think it's important to believe it. And so sometimes I feel like when we see data with Asian disparities, we tend to minimize it and just move on. So I think it's really important that we take a look at this.

[09:00] And you heard already from Dr. Mu, that we have a really interesting demographic trends. If you look at the population of Asian Americans in general, the average age is about 19. But if you look at those that are foreign-born, which is a population that we're most interested in looking at across the United States,

[09:20] as we think about screening guidelines, it's 45. Right the perfect population for us to be thinking about for gastric cancer control. The other thing about that is, as Dr. Wu mentioned, 71% of the adult Asian Americans in this country are born in a different country. And so again, you think about

[09:40] piling on the population that we need to serve. And then so if we don't really think about this, it's hard to understand how we get representative data. I think the data sets that we have are not necessarily reflective of the entire Asian population. The populations are small and not all live in enclaves, so it's very difficult.

[10:00] to do sort of representative sampling and not convenient sampling. So we have to think of better models on how we can collect the data. Not the model that Chin talked about, but sort of a different way of collecting data. And so what I was really excited about is when,

[10:20] Under the Obama administration, he had just a brilliant idea, when Dr. Koh was there as well, to start the Precision Medicine Initiative, which is to collect a million individuals' epidemiological data as well as biobanking data, genetic data, with 50% of those populations.

[10:40] being underrepresented in research. And this is just incredible. This will be and continues, will be a landmark study. And I went, our group was one of the first cohorts that were funded to be part of this and I was really excited. So we went to the investigators' meetings sitting in a room about 10.

[11:00] times bigger than this with all these people trying to jostle and get their funding. They put this slide up and they talked about this precision of medicine initiative and this All of Us campaign. I kind of raised my hand because I looked at the picture and I said, do you actually mean some of us? Because I didn't.

[11:20] see us reflected in this. Francis Collins was the head of the NIH and I think every time he saw me, he tried to run away because I kept trying. What's wrong with the picture? What's wrong with the picture? And obviously it's an amazing program. So what comes of that?

[11:40] We meaning the Asian Health Coalition received a very large grant from the NIH and became the national precision medicine Asian American, Native Hawaiian, Pacific Islander engagement recruitment course. So we are setting forth the national strategy for the educational recruitment of Asian American, Native Hawaiians, Pacific

[12:00] for the country. And we're in this little tiny place in Chicago, and this is what happens when you bug people. But basically, we have partnerships across 40 states. We include Guam and Hawaii in that. We have over 20 community-based partners, and we're really making a very big difference, and I will show you.

[12:20] So this is one of our kind of leadership meetings and I would like to point out the woman on the, let's see what side is this, on the left and front on the left. Vanessa Randall is my partner in crime and she's actually leading this initiative and she's amazing. So what

[12:40] What is the impact of this? So this is looking at enrollment numbers from July 2018 to October 2022. Obviously there was a lag during the pandemic. And so you can see here when we got involved with the little yellow arrow and we are now up to over 16,000 still.

[13:00] not where we should be, but I think it's a large part because the only languages that you could recruit from were English and Spanish, and I think now we're looking at Asian languages as well, but it's with a lot of kind of pushing the NIH who have been very responsive. But we recently looked at the data of these 16,000 people, and what we found is that they're much younger.

[13:20] They have very high health literacy or literacy in general and higher SES than we would expect across an Asian cohort. And so I think we still need work to do to make sure that this cohort that we want to study and inform for precision medicine really represents the populations.

[13:40] And what we have done in Chicago is we worked with community-based organizations, six community-based organizations in Chicago, we realized serve 40% of the Asian immigrant populations in the state. And so should we be creating our own data commons and should we use this as a model to collect a lot of the very robust data

[14:00] that community-based organizations are using and how do we empower them to contribute to the answer. But the NIH has really been doing a fabulous job recently, and actually always, but recently they've really stepped it up and have been very responsive to many people sitting in this room who have been a constant voice.

[14:20] about what about us. And so in March of 2021, they held a workshop that was called Identifying Research Opportunities for Asian American, Native Hawaiian, and Pacific Islander Health. And from that, identified some really key opportunities to help kind of reduce some of the disparities and think about Asian research.

[14:40] And in July 2022, they launched a cohort study RFA called the New Epidemiological Cohort Study Among Asian American, Native Hawaiian, Pacific Islanders. And they want to recruit 10,000 individuals across the country with biobanking

[15:00] and survey and they want to make sure that this is a very community engaged process. So I'm hopeful while 10,000 isn't a lot, it's better than zero and so I think I'm really hopeful that we're moving altogether in the right direction. So I want to pivot now and talk a little bit about some lessons from colorectal cancer.

[15:20] There are actually quite a lot of similarities. And one is the age group that we're thinking about. When you think about gastric cancer screening and you think about colorectal cancer screening, so you know, 45 to 50 to begin that screening. The demographics, these are both diseases that kind of disproportionately impact outcome, poorer outcomes.

[15:40] if you're a racial ethnic minority population. So gastric cancer, obviously we know, is disproportionately found among people of color, and mortality rates for colorectal cancer screening and uptake is disproportionately lower also across the racial ethnic minority populations. There is a pre-malignant

[16:00] I think, window, and so it gives us time to sort of jump in and make a difference. And I think both of these are going to be challenged by really linkage to care. So if you start off screening in a primary care clinic, you need to link to follow-up, whether it's stool-based screening, whether you're looking at H. pylori, when you're looking at

[16:20] I think the end result is that you're going to have to get an endoscopy. And so I think what's really important is we know that just getting an endoscopy or colonoscopy is not enough, but you need to think about quality. We saw that with mammography. We're probably seeing that with colon cancer and definitely listening to someone

[16:40] earlier today talked about how challenging it can be to find kind of evidence of early gastric cancer. And so I'm going to talk a little bit about my experience with colorectal cancer research because that's sort of where I spend most of my time. And I want to look at this through kind of a lens of implementation science. This is from Harvard Catalyst's review.

[17:00] And what it looks at is real world prevalence over time. And you can see that there's many different ways that we think about research. There's efficacy studies, there's effectiveness research, and then at the end is implementation science. And I'm going to argue that we ought to be thinking about implementation science right now.

[17:20] now because I think there's no doubt that gastric cancer guidelines and policies are coming. And so what is implementation science? It's how you take what we already know, evidence-based practice, and get it to work. Get it to work in the clinic and to improve population health. And I think it's science that really takes you out of the lab.

[17:40] lab, out of offices and into the field, which really allows you to understand what works and what doesn't work. And we know with colon cancer that despite having evidence-based guidelines, despite having good data that shows that screening works, uptake particularly among federally qualified health centers is still far below 15.

[18:00] So it's not just enough. We can't stop with just guidelines and with policy. And so I'm going to talk a little bit about some of the data that I have put together from our NCI-funded Cancer Moonshot Initiative. This is through something called Accelerating Cholerectal

[18:20] cancer screening and follow-up through implementation science. And I think that there's some lessons to be learned here. First of all, I'm going to look at mult– this study is a very large study working in four federally qualified health centers in the Chicagoland region across 188,000 lives and it's a pragmatic trial.

[18:40] looking at multilevel, multimodal evidence-based interventions to increase screening through the lens of implementation science. So a very large study. And we've looked at the level of the provider. So we know, without a doubt, that having a provider tell a patient that they need to be screened is probably going to be better.

[19:00] probably the number one predictor of them getting screened. So we looked at this and so one of the areas that we looked at is can we increase providers to have their patients get screened. And so we put in provider prompts, we did all of the kind of evidence-based tools and none of them worked. But what we did find was that when we tell providers

[19:20] providers to increase their screening rate, they order more screening, which you can see on that kind of top blue line. But there's a huge divide between providers' ordering and actually completion of screening. And so we know that providers obviously are not enough. And as we think about gastric cancer control, I know Dr. Huang earlier said that

[19:40] Even Asian providers don't know what the guidelines are for screening. And even when they do know the guidelines, as in the case for colorectal cancer screening, they might have increased order rates for screening, but it may not translate at the population into increased screening. So we need to do more. So we've also looked at what about patient reminders. And without

[20:00] Without a doubt, this has been in some ways golden ticket. It's a no-brainer that we know that when we have used short messaging systems in both Asian languages, in Spanish, and in English, we have seen a very large uptake in screening. And that is, you give someone a stool-based screening or you tell them to have a colonoscopy, and you

[20:20] You nag them. You remind them to do it. You remind it in their language, right? And you do it repetitively until they get this done. And we've had really great success within our FQHC partners in getting screening accomplished that way. But I want to just turn to one last thing, which I think is

[20:40] going to be very important as we think about gastric cancer control. And that is the capacity to do this work. And so this is a map of where we have capacity for colonoscopies in Chicago. And Chicago is kind of where the highest density of all the dots are. And those dots represent those kind of

[21:00] The maroon dots are GI clinics. The big blue dots or circles are specialty centers. And then the little other dots are like FQHCs or FQHC lookalikes. And the reason that I think this is important is despite having a huge number of resources within

[21:20] in this small geographic region in Chicago. The mortality rate and incidence rate for colon cancer far exceeds collar counties that have less. And so there's this problem with fragmentation that's really not, that's inhibiting us to be able to be successful. And I see this problem potentially happening

[21:40] cancer as well, that do we have the capacity to do this work? And I would have to say that looking at the data, we have the capacity. What the problem is, is we don't we have a fragmented system and particularly among FQHCs that don't have operability, interoperability with specialty services, you might as well be in a different country.

[22:00] And so one of the things that I was really shocked by is when we went to one of our FQHCs that serve the most vulnerable populations. You know, federally qualified health centers serve about 30 million people a year and about 5% are Asian American. But they serve a disproportionate number of people.

[22:20] people of color, so all the people that we're interested in when we think about gastric cancer control. And I was really surprised at more than one place that the faculty there, the providers there, told me they were really happy when their patients refused colorectal cancer screening. And I was really surprised to hear that, just didn't make any sense.

[22:40] to me. I was very angry. And so I had to probe a little further and they said, we in Chicago have one big safety net system. And it takes about 18 months to 24 months for somebody who has anemia and is bleeding to have a diagnostic colonoscopy. And that's because there's just a backlog of research.

[23:00] sources. And so what they thought was it's better not to know than to know and not be able to do anything about it. And yet right next door they have all these specialty hospitals, but they're waiting in line to try to get this done. And so what my team realized is that we can't, what are we doing? Why are we continuing to

[23:20] tell people screen unless we have a solution. And this is where implementation science comes in. And so we worked with the front end staff, we worked with the nurses, we worked with the providers, and we thought we really have to fix this problem. And so we created something called a SaaS, which is software as a service. It's web-based, it's HIPAA compliant, and it's in the cloud.

[23:40] And what this did was it allowed us to decrease the fragmentation that happens in the healthcare encounter. So as many of you know, if you see a patient, you're a primary care physician and you tell your patient to have a colonoscopy or a mammography or a cancer screening and you let them walk away before they get that appointment, 50% will not show up.

[24:00] That's what the data shows. So we want to do point of scheduling, point of service scheduling, which we did by partnering with our clinic and hospitals, the University of Chicago, Northwestern, Rush, other places around town. And we asked them, as part of their community benefit, since they all have federal funding, support that why don't you just give us a few free com-

[24:20] colonoscopy slots and we'll fill them. And so what we did was we were able to link people to specialty care to get their colonoscopy and we were able to also provide through the cloud records back to the FQHC and so sort of this complete wrap-around service which of course I knew nothing

[24:40] about SaaS, but I knew that I had to fix a problem. And I would have to say out of our first 40 patients, we've had amazing success. This is from concept into practice. We found 7% with early stage colon cancer, 95% completed their exam, and 95% had a good

[25:00] bowel prep. We're not eating lunch right now, so I talk about this. But if you can't see, you can't remove polyps, right? So I think that's really important. Forty percent had polyps, which I think are really fall within kind of all the quality guidelines. But I think the most important thing is we reduce the weight time. So for people who are fit positive

[25:20] or had an abnormal test, we reduced that wait time from 18 months to two to four weeks. And so I think we were really making a very big difference, and I think these are the type of innovations that we need to be thinking about now as we think about gastric cancer control. So my last slide is this. This is a very old slide.

[25:40] This is data from almost 20 years ago. This is the presentation I gave when I first met Dr. Ko. This was a session on gastric cancer risk in Korean Americans, and this was being spearheaded by one of my great colleagues, Moon Chen, who is the head of an NCI-funded medical center.

[26:00] NCART program for cancer control in Asian Americans. And while the numbers have changed slightly, what I think about is that it's been 20 years, and I'm still talking about this. And I don't want us to be here 20 years from now. Well, I probably won't be here 20 years from now, but I don't want you to be here 20 years from now and continuing

[26:20] this discussion. We have made great strides together as a community thinking about gastric cancer. We have great data. We will never have perfect data. We have to believe what we already have. We also have to think about the fact that 71 percent of Asian American adults are foreign-born. And so we need to be able to use

[26:40] data that we're going to hear about later from Korea and from Japan and other countries. Those are our populations. So we are not so unique. We don't need to create everything on our own. I think we should be able to extrapolate from what we are already seeing in other countries and then believe that data. So I want to end with this slide.

[27:00] A quote from Reverend Martin Luther King, who said, our lives begin to end the day we become silent about things that matter. So we matter. Thank you.