Jillian Rose '04 — Patient advocate

Show Notes

In this episode, we talk with Jillian Rose ’04, who graduated from PC with degrees in social work and health policy & management. Rose, who is director of community engagement, diversity and research at the Hospital for Special Surgery in Manhattan, received the Distinguished Educator Award from the Association of Rheumatology Health Professionals for her work training health professionals to improve care and to change outcomes for patients of color. Rose, who will receive her doctorate in health education from Columbia University in the spring, talked about the challenges patients face and how she found her calling while studying at PC.

What is Providence College Podcast?

The Providence College Podcast features interviews with interesting members of the Friar Family. These in-depth conversations with PC students, Dominicans, faculty, staff, and alumni provide a rich look into the lives of noteworthy Friars. Occasionally we will also bring you on-campus lectures and presentations. Go Friars!

00;00;00;23 - 00;00;23;05
Liz Kay
Hello and welcome to the Providence College podcast. I'm your host, Liz Kay, and I'm joined by producer Chris Judge of the class of 2005. Here's the Province College podcast we bring you. Interesting stories from The Fry Your Family. Today we're talking with Jillian Rose of the class of 2004. Jillian is director of Community Engagement, Diversity and Research at the Hospital for Special Surgery in Manhattan, which specializes in orthopedic surgery as well as rheumatology.

00;00;23;19 - 00;00;31;14
Liz Kay
She was recently awarded the Distinguished Educator Award by the Association of Rheumatology Health Professionals. Jillian congratulations on your award, and thank you so much for joining us.

00;00;31;21 - 00;00;36;04
Jillian Rose
Thank you so much for having me live. And thank you for the food as I appreciate it.

00;00;36;05 - 00;00;41;12
Liz Kay
Could you start by telling us a little bit about what inspired you to pursue a career in health education?

00;00;41;14 - 00;01;20;12
Jillian Rose
I started out at Providence in 2008 and 2000 graduating and graduated and all four. However, my interest in public health started when I was in Guyana. I was born in Guyana, which is in South America. It's the only English speaking country in South America and a very impoverished, impoverished country. And I migrated from Guyana when I was 11 years old, but had the chance to see very in a very firsthand way the broken health care system and the inability of people to really secure health and health care and live safe and healthy lives.

00;01;21;04 - 00;01;57;17
Jillian Rose
So they were they were high infant mortality rates and high mortality rates basically around things as basic as common cold or a person getting a cut in it, not treating being treated well and becoming sepsis and subsequently them having an infection that would lead to their death. So being around that type of environment really inspired me to pursue a career in looking at how do I best educate people about their own health and how do I help to motivate others in negotiating health care system.

00;01;57;20 - 00;02;04;14
Liz Kay
You majored in both social work and health policy and management here at PC. I'm curious how your PC and your kitchen impacted your career here.

00;02;05;12 - 00;02;40;26
Jillian Rose
Absolutely. I stumbled on I stumbled into social work. I wanted to be a dentist, so I came in pre-med and I wanted to be a dentist to make older people smile. And that was that was my thing. And then I had chemistry and I said that this is not going to work out so well for me. I felt like kind of being in the lab and figuring these types of things that I don't like, the kind of the the the rigorous kind of science pieces.

00;02;40;26 - 00;03;03;26
Jillian Rose
I really like science and research that's more applied. And so I was kind of bored with that work. And then having the experience of having to dissect the frogs and pigs really wasn't up my alley. And so I decided that public health was something that I would move forward with and had Professor Hackett at the time. I'm not sure if he's still there.

00;03;04;29 - 00;03;06;04
Liz Kay
I guess it definitely has.

00;03;06;26 - 00;04;01;28
Jillian Rose
I found so. And then I stumbled into a social work. I don't know how it got on my schedule, and I'm forgetting the professor's name at this time. But she was from New York and would go back and forth but her class was really looking at the workings of social work theory and practical practice and looking at new men in environment and the whole ecological model of how when a person is provided care in a health care setting and when they go back into their own neighborhoods, how does their neighborhood and where they live, work and play what we call social determinants of health today, how that impacts their lives and how social workers really can

00;04;01;28 - 00;04;25;21
Jillian Rose
help to empower, empower patients, people, clients in terms of moving forward with a cure into things that they need for their lives to secure their health. So I stumbled in on that class and I kind of went into unregister from that class because I don't know how we got on my schedule that in the class and was like, Oh, this is right up my alley.

00;04;26;07 - 00;04;52;20
Jillian Rose
This really helps me to understand human behavior. This really helps me to understand the dynamics of where people live and work and how it impacts on their decision making, things like resources and things like that. At the time, we weren't calling it health disparities as we do now, but essentially that's what the class was really about and how social workers can impact change by understanding various theories that has to do with individual behavior and behavior change.

00;04;53;17 - 00;04;59;07
Jillian Rose
And so I decided to double major in health policy and management and social work.

00;05;00;04 - 00;05;03;12
Liz Kay
That's amazing. So it sounds like the happiest accident. You know, you went into.

00;05;04;08 - 00;05;32;11
Jillian Rose
I would also credit my time there in terms of my own learning to Dr. Jackson. He taught our philosophy classes and really talked about the human state and the human condition from a historical perspective. I mean, two years of Western civilization, I thought I would hate it, but it really informs the way I interact with others and understand the world.

00;05;32;11 - 00;06;00;22
Jillian Rose
Even in my practice. Today. And then the the head of the department at the time I think her first name was Marion, and I'm forgetting her last name. I'm really bad at this today. But fact, I know in social work, the head of the Department of Social Work at the time, she always talks, you know, talk about, you know, walk inside by each with your client and being in their shoes.

00;06;01;01 - 00;06;17;27
Jillian Rose
And she was the real catalyst for me, kind of looking up and now to attend Columbia. She was also a Columbia alum. And I remember in my my junior year, she was just like, this is what you're going to do. And these are the changes that you're able to make in the world if you pursue this career path.

00;06;18;06 - 00;06;37;00
Jillian Rose
And she was just a very strong and inspirational woman, leader of the social work department at the time, as well as a real influencer for a change in her own right, in her own work, in her own research, and in the running of the social work program at that time. Marian Madison.

00;06;37;08 - 00;06;58;14
Liz Kay
Madison. Yes, Yes. I've heard a lot of alums talk favorably about how she's impacted their careers. But looking at your resume, it seems like you you know, you followed her recommends and then never left grad school after that. Can you tell us about your myriad degrees that you received? So you started out with your master's in social work from Columbia.

00;06;58;14 - 00;06;59;06
Liz Kay
Where did you go from there?

00;07;00;28 - 00;07;24;16
Jillian Rose
So I started out with my master's in social work, and then I went on to achieve my public health degree at Johns Hopkins University. And then now I'm back at Columbia again. But I have to tell you this. I think there's one thing that Providence taught me as a black woman coming on to a campus that was homogeneously white.

00;07;24;24 - 00;07;53;10
Jillian Rose
It was absolutely intimidating to be there. I grew up in Hartford. I went to an all-Black school, and my counselor, she said to me, my school counselor, she said, you know, apply to Providence College. It's a great place. It's not as diverse, but you will get a quality education. Right. And so I couldn't imagine how homogenous white the campus would be when I got there.

00;07;53;27 - 00;08;23;11
Jillian Rose
So it was definitely an adjustment And so I wanted to also be a part of social change. That's why I joined the club and was a part of the Balfour Center with Wellesley College on who who left and work in multicultural studies and really provided a home for the college experience of inner city kids coming into a school like Providence and really provided a cradle and helped us get through the college experience.

00;08;23;28 - 00;08;58;18
Jillian Rose
The institution was also embracing of the learning and the changes and the transformation that needed to happen for more minority students to feel more embraced. And I feel very proud of those conversation and the evolution of that, because as I was there, I saw the change of, you know, the influx of more and more students of color and more and more diverse students, not just students of color, but students from many different backgrounds and religions and culture that really made our campus experience even more rich.

00;08;59;11 - 00;09;08;11
Jillian Rose
And so I do have to commend the institution for the evolution even even in my time that they embraced.

00;09;09;04 - 00;09;19;26
Liz Kay
That's wonderful. I'm glad to hear that. I mean, you knew coming into it that it would not be like your high school but you were able to find a home and a place and succeed. Phenomenal.

00;09;19;28 - 00;09;46;10
Jillian Rose
Absolutely. Absolutely. And there were teachers who were they were professors who were just about learning You know, there were professors who were just really passionate. You know, like Dr. Madison and Dr. Hayes and and Dr. Jackson who was who was very focused on helping us to meet the challenges of life academically as well as personally So they were invested.

00;09;46;11 - 00;10;13;28
Jillian Rose
And that's one of the other things that P.C. has going for forward. They had very professors who were very smart, brilliant people like Dr. Dowdy, who I did my my my student internship with my my student work study with, although I wasn't a part of that program, you know, Dr. Daddy work and his studies, he kind of took me under his wings and really helped me to move through the college experience.

00;10;13;28 - 00;10;19;28
Jillian Rose
But people were really invested in helping students to learn and kind of move to the next phase of their lives.

00;10;20;14 - 00;10;50;01
Liz Kay
That's wonderful. That's really wonderful to hear. And as you said, you know, you know, you were really inspired to provide outreach for patients, you know, for minority patients. And other patients. And this most recent award really recognizes that work you've done to rectify inequalities of care. I'm curious if you could tell us about some of the things you've done to help patients, particularly women of color, in some of the work and deals that you've done.

00;10;50;26 - 00;11;37;18
Jillian Rose
Absolutely. At Providence, College, I had an internship, too, at the Met School, and it was the next school took a different approach to learning. And it was really in the heart of a community that was disproportionately affected by everything. It was an impoverished community. And one of the things that I had as a project was to help to create a school based health center and and really interacting and engaging with students who didn't have appropriate health care or didn't have food to eat or didn't have school lunch or, you know, just didn't have the resources at home to kind of move through the things that they needed to move through, as well as who would have

00;11;37;18 - 00;12;14;20
Jillian Rose
to go to appointments with parents who English as a second language for them. And really have these like Maslow's hierarchy of needs that they had to meet as students for their immigrant families before they can even think about their own education. And so having that experience at that Providence College and moving towards a degree at Columbia, my social work degree at Columbia, that experience in Providence really helped inform me about the person environment and looking at patient care and what that meant So it was only wasn't only about seeing the doctor.

00;12;14;28 - 00;13;00;14
Jillian Rose
It was about understanding your illness. It was about looking at your cultural values and beliefs. And it was also about looking at the resources that you had when you left a doctor's appointment after that 15 minutes encounter. Who was your interpreter? How would you get your medication? Did you have copay? And so having gone to Providence College and done those to work, I was able to inform the needs of my client from that perspective and come in with a very rich basis of looking at that health care and the health care experience of minority people And so my first job at Hospital for Special Surgery was being a supervisor of lupus support and education program.

00;13;00;24 - 00;13;27;22
Jillian Rose
Lupus is a chronic illness that disproportionately affects women and nine to one versus men, and especially women of color. And it affects African-American, Asian, Latino women and Asian men, Asian women four times more than it affects white women. And we don't know why. And if it's an illness that can be very debilitating as a chronic illness and you have it for the rest of your life, it's also an illness that's very invisible.

00;13;27;29 - 00;14;07;28
Jillian Rose
So people think you're well and you're okay and you can be well and okay today, but tomorrow you can be, you know, unable to wake up and comb your hair or dress yourself or cook for yourself or take care of your children. And so the illness can wax and wane in that way very quickly. So the Expertize of being able to understand where a person is in their life, their resources in their home, and what that means to them in terms of dealing with a chronic illness as well as understanding their resources, helped me to build programs that would empower the patient beyond the exam room.

00;14;09;12 - 00;14;12;11
Liz Kay
A little bit about more of those those programs.

00;14;13;15 - 00;14;39;27
Jillian Rose
Yeah. So we the two of the programs that I first started managing with the Charleston Lupus Lupus Chat program, and it was a support educator. It is a support and education programs program for people with lupus and their families. And we provide individual support and counseling to patients in our waiting rooms and in our doctor's office to look at their psychosocial needs and what barriers they have to care and help to bridge those gaps.

00;14;40;05 - 00;15;02;11
Jillian Rose
We have a support and education group for teens, young adults and their families that help them to better understand the management of lupus and what this living with the disease is like. We provide outreach to our community in the form of health fairs and professional talks to doctors, nurses, and other clinicians across New York and across the country.

00;15;03;05 - 00;15;43;10
Jillian Rose
And we also provide a telephone service in both English and Spanish with peer health educators who had lupus for ten, 20, 30 years to provide on a toll free line counseling to other people with lupus and their families. The other program we have is called Lupus Line and it's been in existence since 1988. Again we're veteran counselors, we've had lupus for 2030 years provide counseling and support over the phone to anyone in the world who calls the line with a patient or family member of the patient to learn about how to cope and manage their illness.

00;15;44;10 - 00;16;09;26
Jillian Rose
And that program also we do have medical advisors for both programs. We provide in-service training for our doctors, our fellows, our residents, our physicians and training to help them to integrate these programs into the life of our patients. So when they go home, they're not isolated. You know, when they go home, they don't feel like, okay, I only have 10 minutes with the doctor and I don't understand.

00;16;10;02 - 00;16;30;13
Jillian Rose
They can pick up the phone. They can call Karl, a peer health educator, to find out more about how to manage and cope with the disease, but also how to better understand what's happening with their bodies as well as how do I talk with my family about this? How do I talk with my job about having a chronic illness that takes me away from work?

00;16;31;00 - 00;16;53;18
Jillian Rose
What types of resources are available to me and my child and my family coping with this illness? So we provide a full service level of support that help patients to cope and manage their illness outside of the exam room, as well as a cultural perspective and what's valuable to the patient, to our doctors. So they're more empathic when our patients walk into the room.

00;16;54;17 - 00;17;08;23
Liz Kay
So it's really meeting the patients where they are not trying to have them kind of. Well, these are these are the types of steps that we think you should do. It's finding out what's valuable to them and important to them if they have hobbies or or or pastimes or, you know, a family that they need to do.

00;17;09;22 - 00;17;29;23
Jillian Rose
Absolutely. And, you know, one thing is humanizing to know someone party and they're part time, but it's actually lifesaving to know that someone is going to go to the Dominican Republic for a month after you've prescribed an infusion therapy for them for the next three or four weeks. And they're not going to adhere to your treatment because they don't trust you.

00;17;30;14 - 00;18;03;25
Jillian Rose
And so we serve in the in-between spaces in the lives of our patients. Where we can relate to them culturally and join as best as we can their cultural values for complementary therapies and having a conversation with our physicians you know, in terms of the Western medicine, that's also valuable to this perspective and to find a space where that conversation can exist and to co-create a treatment plan with our patients looking at what's valuable to them, instead of them having to say, yes, I'm going to do this and never show up again.

00;18;04;04 - 00;18;13;06
Jillian Rose
So it's really looking at patient safety issues and what's going to be right for that person to preserve their lives and to preserve the quality of life that they want to live.

00;18;13;21 - 00;18;33;16
Liz Kay
That's amazing. To have that kind of interaction and and knowledge and respect for a patient's patient's life. That's that's really amazing. I'm curious how, you know, you've been working with lupus patients and their families for more than a decade. How have you been able to use technology to help reach them and their families?

00;18;34;16 - 00;18;59;20
Jillian Rose
Oh, that's great. You know, one of the things that we did that we launched about two years ago now is an app called Lupus Finder. Mind It, Help US. Am I in the E.R.? And it's a free app to help to manage your chronic illness. You can have rheumatoid arthritis. You can have asthma, you can have fibromyalgia, any any chronic illness, any illnesses you get.

00;18;59;22 - 00;19;21;00
Jillian Rose
You have you can use the lupus minor to manage that illness. It looks at medication doses, physicians. It kind of calls all your medical care information together in one place. You can take pictures of your symptoms right in the app. What's going on with you from day to day, monitor your mood and your symptoms and track it over time.

00;19;21;06 - 00;19;41;02
Jillian Rose
And this app was really created by our patients as a social worker. When the idea to create the app came up, we said, hold on, wait a minute, we need to hear from our patients and what they really want in terms of if they're going to use the app. So if they're going to really use it to integrate the app into their lives, what do they want in it?

00;19;41;03 - 00;20;02;11
Jillian Rose
We're not going to use this use it as clinicians. So we have several focus groups with our patients as well as our adult patients, as well as our teens and young adults who are really native user of this technology. And we built the app to their specifications. And from the feedback we learned in those focused group that we conducted.

00;20;02;20 - 00;20;24;14
Jillian Rose
And so we've we've had about 3000 downloads so far in terms of launching the app. And we're going to look at this in terms of how people are using it and plan to do a study on how it's being integrated into the medical interactions with patients. And their doctors. But we've really gotten some great feedback about the app.

00;20;24;23 - 00;20;51;20
Jillian Rose
But but all the programs that we do, all the programs that I'm involved in, it's really about the patient. If it's not patient centered, then we're really wasting our time because the patients are the experts about who they are and we can't do our work if we don't engage the patient. And if we're not able to connect with the patient, we can't we cannot share with them all this wonderful research that we're doing.

00;20;51;26 - 00;21;06;10
Jillian Rose
We cannot share the new technologies that we have, and we certainly cannot make an impact in the in the public health disease states that we have at epidemic levels if we don't put our patients at the center.

00;21;07;04 - 00;21;34;26
Liz Kay
Too. And there's so little about our health care system in the United States that's patient centered or patient patient driven. This is this is like Mind-Blowing, to hear you describe it this way, I wonder if you could talk a little bit about your work. I was intrigued to read about your work as the chair of the Hospital for Special Services, LGBTQ Plus Committee because it sounds like you're using data to try to help patients, you know, in situations with in different situations.

00;21;34;26 - 00;21;40;14
Liz Kay
I wonder if you could talk a little bit about how that data helps inform some of the decisions and trainings you do at the hospital.

00;21;41;10 - 00;22;24;12
Jillian Rose
Absolutely. So back in 2012, you know, there was this big, big conversation happen and there's been big conversations happening about health disparities, you know, for for several years now, you know, and the IOM came out with two landmark reports about health disparities in minority populations and other reports talking about how those disparities are getting deeper and how we don't understand why minority people are different disproportionately affected by so many different diseases, even when we controlled for insurance and access to care.

00;22;25;12 - 00;23;09;29
Jillian Rose
And so one of the national initiatives to better collect data to understand disparities. So, you know, I moved into the position of really being interested and looking at how the data and demographic information we have on our population can inform our care at very granular levels. And what I mean by that is that if we don't know the population that we serve and we cannot serve them in a more nuanced way, for example, if there's an influx of people who speak Arabic in our catchment area, in our service area, oftentimes you get that information on the back end after people start to come into your institution.

00;23;10;09 - 00;23;44;07
Jillian Rose
However, with collecting race, ethnicity, language, sexual orientation and gender identity data, you're able to have information so that you can train the care of patients, so you can look to see who's coming into your institution and prepare for them with the resources that's needed. In addition to that preparation, there's the first looking at Am I serving patients who are of a different culture, of a different background, who speak a different language, of a different religion, who identify their sex, their sexual orientation and gender identity in a different way?

00;23;44;21 - 00;24;26;19
Jillian Rose
Are we missing anything with those patients? So I've created a standardized way at the hospital for collecting the data and really looking at the technical part of collecting it and using best practice questions, training our staff on how to best collect it. And I'm also respectful and dignified way because we don't want to alienate people. Having an experience with health care we know in our country has been riddled with racism going back to the Tuskegee Airmen, going back to a history of the LGBTQ community being marginalized, being abused and violent experience in health care spaces.

00;24;26;26 - 00;24;52;07
Jillian Rose
We want to ensure that people are not stigmatized by the question, but empowered and best understand why we're asking the question. So it was important for us to create an infrastructure that was more welcoming and embracing and inclusive so that we can ask appropriate questions and let patients know we're asking because we care. We're asking because we want to ensure that we provide the highest quality of care to all of our patients.

00;24;52;18 - 00;25;30;23
Jillian Rose
And it's not we wouldn't know if we're doing that 100% unless we have appropriate data. So, for example, in our gender identity data, and sexual orientation data collection spaces, we have been able to not only reach out to our patients to let them know why we're collecting and provide training but we've also been providing training to our clinicians, our doctors, our nurses on, for example, a person who is now identified as a transgender man should have a pregnancy test because they were biologically and probably still is biologically female.

00;25;31;01 - 00;26;00;02
Jillian Rose
And gender identity does not predict a person's sexual behavior. So for a man of perform surgery and someone we need to know that they're not pregnant, whether they identify as a transgender man, and so we don't make assumptions about people that put them in unsafe situations. We need to understand if clinicians want to stop hormone therapy for a person who might be transitioning so that they wouldn't be at risk for a blood clot, you know, when they come for us, the surgery.

00;26;00;02 - 00;26;09;22
Jillian Rose
So it's important for us to understand and ask appropriate questions of different populations so that we can have so that it can inform the safe care that we provide.

00;26;09;29 - 00;26;34;04
Liz Kay
And, you know, this certainly isn't the first word award you've received. But I remember I was reading through some of the accolades you received previously and saw that, you know, when you say you work with clinicians, you were being praised for coming being willing to come in at 2 a.m. to train nightshift staff. So I think, you know, when you talk about the work you're doing, it sounds like you're doing it around the clock when you're meeting the clinicians and the patients where they are.

00;26;34;13 - 00;26;56;13
Jillian Rose
Yeah. You know, one of the thing about the things about this work is, you know, I've been a patient and I'm certainly a clinician and being able to sit in both seats when you're a patient and you want to be able to know that the person in front of you who's going to care for you at least knows something about who you are and what's important to you.

00;26;56;21 - 00;27;37;11
Jillian Rose
You know, you want to ensure that they're not looking at you as just a knee or an ankle. Or another illness to treat. But they're they want you know, you want them to know that you have a life or you have children or you have big dreams and goals or you are more than your illness. So it's important for me not to kind of turn the computer down at 5:00 and punch in at 9:00 because people lives depend on my ability to help, to support our clinicians, my ability to help people find creative way in ways and creative solutions of helping us identify our own biases, our own hang-up, and helping us stretch beyond who we

00;27;37;11 - 00;28;08;28
Jillian Rose
are to accommodate and care for our patients. In more appropriate ways. So it's really it's really not just a job for me. It's a passion and definitely aligned with the purpose of why I think I'm on this planet is to help be a catalyst for better and safe care for patients and in their own empowerment to get something as basic as health care that everyone should have access to, to live good, prosperous and productive lives.

00;28;09;15 - 00;28;27;19
Liz Kay
Jillian, thank you so much for joining us on the podcast. It's really been a fantastic conversation. Subscribe to the Providence College podcast in all the usual places, including iTunes, SoundCloud, Stitcher, Google Play, and our new newest platform, Spotify. If you like what you hear. Please review and share with others. Thanks for listening and go Friars.