Chicago's Zip Code Issue with Melissa Simon, MD
In Chicago, where you live can impact your likelihood to die from cancer. Melissa Simon, MD, wants to change that. Find out how this scientist, educator and advocate for the underserved is working to improve the cancer mortality gap in Chicago.
Erin Spain: Welcome to Breakthroughs, a podcast from Northwestern University, Feinberg School of Medicine I'm Erin Spain, editor of the monthly breakthroughs newsletter. Today we're continuing a conversation from our last episode on the topic of health disparities in Chicago. It's a fact, where you live, impact your likelihood to die from cancer. Dr. Melissa Simon wants to change that. She's dedicated her career at Northwestern to health equity outreach and studies. In particular, her work has focused on improving cancer rates and Latino, African American and Chinese communities. Dr. Simon, thanks so much for joining me today.
Melissa Simon: Thank you, Erin, for having me today.
Erin Spain: So, you're a physician, you're a scientist, an educator. You're an advocate for the underserved. I mean, you're beyond the triple threat here. What motivates you to do the work you do?
Melissa Simon: Well, I actually grew up in a very impoverished area of Detroit bottom one percent of this country and I always knew that I could help make a difference in the world. And I experienced health inequities firsthand with various family members. And I was very determined to try to change that around for other people and make this world a better place for everyone. And I'm really committed to making sure that everyone has a chance to achieve the health that they want. So, thriving and vitality are number one in my mind for everyone.
Erin Spain: So, you grew up in Detroit, in the, in the city. And how long were you there? You there? All through high school in Detroit ?
Through to twelfth grade and then I went to the University of Chicago for my undergraduate experience.
Erin Spain: Okay. So what was that transition like?
Melissa Simon: That transition was crazy. My AP biology teacher in Detroit, basically said you're going to the University of Chicago. And I said, okay, how does that work? And basically, she helped me get an application. It was on paper back then, and I had my auntie and I, we rented a minivan and piled it with a whole bunch of stuff. We didn't know what we would need for college, but you know, we piloted with a bunch of stuff. Drove there for orientation week. I had never been there before. I had had an alumni interview actually. And then I, you know, I showed up and, and day one, the rest is pretty much history. I love Chicago. I had the opportunity to found and lead the Latino Students Association at University of Chicago and I was really connected to community groups across the city and that really started to enlighten me as to, you know, what was the status of health around the city of Chicago and, and where, where were the opportunity gaps, what could we do to make things better. And that really helped focus me on the future. Then when I finished the University of Chicago, I actually had the opportunity to work at the Chicago Department of Public Health and I was an epidemiologist, so I had one of the best mentors ever. Dr. Steven Whitman, who unfortunately passed away a few years ago, but he taught me so much and he believed in me. And then he invested in me and I just had an amazing experience of learning how to collect data in a scientifically accurate and appropriate way in partnership with communities around Chicago. And then I learned how to tell the story, the story of the data and let the data and the community voice speak for themselves. And then I was able to combine the data and the story to help move policy. And that to me is, is what really is what drives me today with all of my work is to be able to collect data in partnership with communities and really try to fill those opportunity gaps and really tried to make healthcare delivery and health accessibility for everyone.
Erin Spain: Did you know you want it to be a medical doctor and obviously you knew that you were interested in helping the community that you came from and your new community in Chicago when you got here, what was in your mind as this young student at the University of Chicago?
Melissa Simon: Well, I thought being a physician would be an amazing thing. I didn't have any role models or other than my own pediatrician back in, in Michigan, but I really didn't have anyone to guide me through or tell me all the secrets that you need to know to get into medical school. That secret sauce that I always talk about and so I was, you know, I'm kind of going along and, and, and taking the courses for premed curriculum and, and trying to figure out exactly how to do it. And so that has been my career path. Just trying to figure it out and you know, that's what led me to create one of the programs that I lead now back in 2014, Northwestern university actually had this call for massive open online courses. They're called moocs. And so my goal was actually to apply to build one of these moocs so that I could create a toolbox or toolkit of the sort to help plant that seed of opportunity that a health related career is indeed a possibility for everyone. And, and basically make the information that I couldn't access accessible to everyone as I was meandering along my journey to become a physician. And so I created something called career 911: your future job in medicine and healthcare. And this basically is a course that's free for everyone around the world. It launched in September of 2015 and I've had, you know, tens of thousands of students take it, teachers use it in their classrooms here in Chicago public schools. They use the videos and the course work as a way to flip the classroom and the students actually have the opportunity to walk through building their career portfolio. So they learn how to make cover letters, they learn how to write personal statements. They, they learn how to do their three minute elevator pitch or three second elevator pitch for that matter. They practice interview questions and they learn how to build a rese. So, all of those things come out as outputs or homework throughout the course, and it's just a really fun time to see who's used it around the world.
Erin Spain: So, you basically created career 911 for someone like you when you were a kid in Detroit who thought you might want to go into medicine but didn't know anything about it.?
Melissa Simon: Exactly.
Erin Spain: And when you're not making moocs for junior high, high school, age students, something else or in clinic, I want to talk a little bit about. You still are overseeing patients and you're at Prentice Women's Hospital delivering babies, something that's really big, a big project in your career right now, is this grant from the National Cancer Institute, the project's called the Chicago Center for Cancer Health Equity Collaborative.
Melissa Simon: So, what the grant does is marry the Northwestern University, Robert H. Lurie Comprehensive Cancer Center with the University of Illinois Cancer Center and University and Northeastern Illinois University together to basically build an infrastructure to spawn research training education along with more community engagement around cancer health inequities and the research training education. And that engagement needs to be local and relevant obviously. And so what we were able to do is assemble a group of people really fast and we were lucky enough to get funded on the first try. So we started September 2015 and it has been amazing. What an amazing experience to have this opportunity to create an infrastructure that is not your usual infrastructure that I, academic research heavy institution has. And what this has done at Northwestern is really a plant the seed that, you know, you can do this. We can do research at the NIH level that actually connects to community in a meaningful way and really worked to eliminate health inequities on the ground floor and not just talk about it in the lab, not just, you know, try to manipulate data on a computer and publish a paper, but to do real on the ground grassroots level work and yes, we're a long way still from solving these deeply ingrained inequities in health and especially in. But we're getting there and we're raising awareness. This past September we had our annual report back to the community and we had over 300 attendees at the Arturo Velasquez Institute, one of the city colleges, and it was just amazing support. I mean, people have such a will to want to get together and collaborate and try to solve these problems and try to promote health across the city and this to me is really, really important.
Erin Spain: Let's talk a little bit about those problems here in Chicago. When we talk about cancer, what I said, the top of this podcast, depending on where you live, can impact your risk of dying from cancer. This is a problem. Can you talk a little bit about what's happening here in Chicago specifically with cancer?
Melissa Simon: Yes. So, with cancer there are access issues, there are awareness issues, there are education issues, there is a whole variety of barriers to care in cancer and for any health-related issue for that matter. And these barriers also include ingrained mistrust with the healthcare system, fear, fear of getting diagnosed with cancer, fear of entering a healthcare system, fear of interacting with a clinical care team or physician, there's just a wide variety of issues that you have to disentangle in order to provide the best care for everyone. So you really have to meet people where they're at. So let's talk about the breast cancer story. So back in 2007, a group of us, including Dr. Whitman and others around the city got together to look at the data. What were the data telling us? What was the story? And unfortunately what the story was is that the mortality difference. So the death rates between black women and white women were significantly different. Back in the early 19 eighties, the death rates for black and white women to breast cancer were almost the same, right around 33 to 35 percent of women diagnosed with breast cancer, whether they were white or black were dying, but somehow somewhere along the way around the mid 1990s, that gap widened, that mortality gap widened. And by 2007 there was a 62 percent difference in death rates between black women and white women. And so, the question is, why so good epidemiologist are good scientists or just any citizen would naturally ask why was this happening to the women when they're in the same city with the same five very large, well known academic medical centers and other community hospitals and hospitals and clinics across the city, and not to mention millions of dollars in research funding around breast cancer being poured into the city. So why? So we really looked at it. We created the Chicago metropolitan breast cancer task force and this really helped create the structure to then figure out the why and the how and the let's do it now. And so, after several iterations of looking at the data and talking to different stakeholders, really women were saying they were getting mammograms but weren't, they were getting mammograms but weren't getting their results back.
Erin Spain: How was that possible?
Melissa Simon: Well, it's possible. I mean, you go to a center and you get your mammogram or any other test and you assume that if no one calls you, it's normal. But then also the quality of mammograms and, and the reading quality. So when the mammogram is done it needs to be read by someone who's certified. And so we, we saw that there was a quality of care issue as well across the city. So we've worked over these last 11 years to really turn all of these things around and it has taken a village, right? Mask communication campaigns, increased awareness across multiple sectors of the city, in concert with the Department of Health, the Illinois Department of Health and the Chicago and Cook County departments of health. It's just been a massive effort and undertaking. And what we've been able to do is reduce the death rate differential to 40 percent. So that is closing and it is very promising, that we've been able to turn this around, but it has taken a lot of effort.
Erin Spain: So, what were the reasons why? Why was there such a big difference between the black and white women and cancer rate here in Chicago?
Melissa Simon: There were many reasons for the difference in the rate, but the top three included that black women were getting mammograms but weren't receiving their results. The quality of mammography was not consistent across the city, including the reading of mammography and treatment and follow up. We're not consistent across the city. So some women were getting diagnosed with cancer but having delays in entering treatment or not entering treatment at all. And then there were problems with follow-up once enrolled in treatment. So there are gaps in care.
Erin Spain: So, there was just, depending on what institution you went to, which hospital, which clinic, you could have a completely different experience as far as starting cancer treatment or learning about your diagnosis?
Melissa Simon: Hence Zip code issue. Yes. Yeah.
Erin Spain: And now you said you and sort of a group of people from across the city had been working on this for over a decade now.
Melissa Simon: A lot of the work that I've done on the ground is called patient navigation. I'm so patient navigation was really originally pitched a back in the early nineties with Dr. Harold Freeman in New York and he was seeing a difference in black women and white women in terms of follow-up and care around breast cancer and outcomes and he went to Congress and they helped pass the patient navigation act and that really launched patient navigation grants across the country and patient navigation programs across the country. And this model really comes back to from a thought as they salute or health outreach workers that are very common across Latin America who have been doing this work for decades. Right? They are women or men who are really interested in helping their fellow citizens and really talking about different health issues and helping them get care or get connected into care across their, their locality. So it's just a really genuine interest in. It's, it's, it's been such a great ride ever since, you know, we, we've built all these different patient navigation programs in tandem with many communities around the city of Chicago and also suburbs. So, we built a, a large patient navigation program in Du Page County, and that really connected a lot of Latina women to care around breast and cervical cancer screening and treatment and follow-up. And then we worked, we've worked with Sinai hospital on the west side to really work with mammography screening. And then we've worked across different health systems like Mercy Hospital and Medical Center in the Chinese population. We've worked at the VA around prostate cancer and navigation and we've worked across even other areas of the states like down south trying to figure out how to build a patient navigation program in that area.
Erin Spain: So, patient navigation. And what if I'm understanding this correctly, these are people in the community who are able to sort of in a cultural way translate what needs to be done there next steps from getting screened for disease to going through treatment.
Melissa Simon: Yes. They're like bridges. So, they meet the person where they're at, you know, they could be canvassing the community, I'm in a shelter at a school, at a food pantry, they could be nested within a clinic or a hospital and just start a conversation, right, start a conversation about a particular cancer screening or health issue and then help get that person connected to the next steps in care that are appropriate for that person and then keep them in care, right? They can serve as translators, they can serve as, you know, not just translators have one language to another, but sometimes translators of medical terminology to real English, and they can also serve as just a trusted bridge between the healthcare team and the person themselves. So another interesting partnership that we've done to really try to expand our touchpoints for people and to promote health is our partnership with the Chicago public libraries. We started this in September of 2017 from a grant from the national libraries of medicine. And that grant has allowed us to partner with Chicago public libraries around raising awareness for clinical trials and clinical trial participation., because again, what we need is a more diverse group of people participating in clinical trials. And by diverse I don't just mean race and ethnicity, although that's really important. I also mean a age, geography, those are all important because the data that we get and this specimens of tissue or blood or urine or saliva, etc. That we get at the bench I'm in, the laboratories actually does make a difference where they're from because if I have tissue or specimens from just one population than all my results of all those studies that I do on that tissue are going to be only relevant for that particular population that participated in that trial. And it is super important to understand this. and so, raising awareness about clinical trial participation and that clinical trials, although have a terrible history in this country of experimentation and not informed consent, we have turned that around with all of the regulations and the different investigators coming up through the pipeline. Science has changed for the better and the ethics of science has changed for the better. And, what we are doing with the librarians now is figuring out how we can touch patrons across the city with this information and then hopefully maybe connect them to particular trials or trial coordinating offices at the different medical centers across our city as well.
Erin Spain: Why is Chicago public libraries talk a little bit about your partnership with the Chicago public libraries and why this is a great place and all the different communities here in Chicago to reach the populations that might need some more education about topics like clinical trials.
Melissa Simon: Librarians are one of the most trusted professionals in our country. And our citizens of Chicago actually use the library, and they trust the libraries there. A place that is safe there, a place that has wonderful information access there, a place that has trusted professionals, librarians and they have computers and all of these things help attract people to the libraries. And I think it's a great place to try to bridge health and healthcare access and trials, access and knowledge and awareness in a way that, that medical centers and libraries that are nested within medical centers cannot.
Erin Spain: You are also seeing patients from these underserved communities here at Northwestern, at prentice women's hospital. Tell me about your time in clinic with these folks.
Melissa Simon: My entire clinical time that I spend at Northwestern is supervising residents, medical students and fellows, in their continuity clinic and the continuity clinic here at the Prentice Women's Hospital. It is called the apprentice ambulatory care clinic and we see patients who are medically underserved so they're either a publicly insured or uninsured. And that to me is amazing experience. That's the patient population. I love to care for m and a. It connects what I do on the ground outside of the walls of Northwestern to inside of Northwestern.
Erin Spain: You can learn more about Dr. Simon's research and read the full article online at feinberg.Northwestern.edu/breakthroughs. I'm Erin Spain, editor of the Breakthroughs newsletter. Thanks for listening.
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