the health disparities podcast

201: Trusted voices – Confronting health misinformation in marginalized communities

 

Health misinformation is a growing challenge, as social media has become a primary source of information for many people, and influential voices are casting doubt on established medical practices.

Trusted health sources are becoming harder to find, especially in communities of color where access to care is already limited and systemic barriers persist.

The fight to bring reliable health information and resources to vulnerable communities is not new.  For decades, organizations like the Arthur Ashe Institute for Urban Health have been doing this  work — building trust, educating communities and empowering individuals to take charge of  their health.

To learn more, we spoke with Dr. Marilyn Fraser, Chief Executive Officer of the Arthur Ashe Institute for Urban Health. Dr. Fraser speaks with Movement Is Life’s Conchita Burpee.

 

Never miss an episode – be sure to subscribe to The Health Disparities podcast from Movement Is Life on Apple Podcasts, YouTube, or wherever you get your podcasts.

 

The transcript from today’s episode has been lightly edited for clarity.

Dr. Marilyn Fraser: Always vetting information, not just you know you may hear something, there are articles that are out there, that come up with new things, but also seeing whether those things are reproducible, when, when, when you have research that’s done, making sure that it’s not just a one shot here, and this is just this one off article over there, but making sure that those things are reproducible, there are other findings that that support what what has been, what is being said, keeping update with the different guidelines. Because if we look at American Cancer Society, the guidelines for screenings may change over time with the American Heart Association guidelines for what blood pressure is normal that has changed a little bit over time. What is considered high blood pressure years ago is not the same that is considered high blood pressure now. And making sure that those things are up to date, that we are up to date with that information, and that we can go out to the community and talk about those things and provide the relevant and up to date information to the community members.

Conchita Burpee: You’re listening to the Health Disparities podcast from Movement Is Life. I’m Conchita Burpee, a steering committee member with Movement is Life for and a long time advocate for health equity. I’ve worked with underrepresented and underserved communities of colors for many years. And today’s episode, we are addressing a challenge that unfortunately continues to grow. Health misinformation.

Social media has become a primary source of information for many people and influential voices are casting doubt on established medical practices. As a result, trusted health sources are becoming harder to find, especially in communities of color, where access to care is already limited and systematic barriers persist. This is a fight to bring reliable health information and resources to vulnerable communities. It’s nothing new. For decades, organizations like the Arthur Ashe Institute for Urban Health have been doing this work. They have built trust, educated communities, empowered individuals to take charge of their health.

I am honored, and joining me today is Dr. Marilyn Fraser, Chief Executive Officer of the Arthur Ashe Institute for Urban Health. For more than 30 years, the Institute has led innovative health education and research initiatives in New York City focusing on cardiovascular health, mental health, maternal mortality, HIV, AIDS and more. Dr. Fraser, Welcome to Health Disparities podcast again, we are honored to have you here and interview with us today. And also, you’re known as a power woman of Brooklyn and you’ve received an award lately, each year, the Heritage Health Information, innovative award partners with Crain’s New York Business, they honor health clinicians, entrepreneurs, administrators and researchers making measurable improvements in access to care, quality, care and long term affordability. This award highlighted the tremendous work the Arthur Ashe Institute is doing to help bring equity to healthcare access and quality, particularly to underserved areas, and you received this award. Congratulations to you and welcome.

Fraser: Thank you so much. It’s such a pleasure to be here today and to have a conversation about health inequity, talking about misinformation. So I look forward to just us just jumping in and talking a little bit more.

Burpee: Okay, my first question to you, Dr Frasier, let’s begin with your role 15 years. Is that correct with the Arthur Ashe Institute?

Fraser: Yes, it’s been a little bit more than that. I probably want to say yes, it’s been 15 years, and I started when I was 10, but that’s not the case. So I’ve been at the institute now for about 20 years, and I’ve I’ve started as a community coordinator at the Institute, and then have moved up into the role as chief executive officer, CEO of the Institute, and a lot of the work that I do in the community centers, as you mentioned, around health education, health information, health promotion and so forth. And I enjoy my role, because it has one part where you’re educating community members about health but the other part is increasing people of color in the health professions, where we have young people that come to the Institute and learn about health and learn about anatomy and body systems and so forth. And these students are interested in health professions, and they get exposed to all the different health professions out there, and they go on to learn about health disparities, health inequities. And so when they go on to college, they are really well rounded and well prepared to address issues within the sciences, but also issues that they may face within the context of college as well.

Burpee: What inspired you to lead this work, and how has the institute mission evolved over the past three decades?

Fraser: One of the things you’ve touched on in terms of misinformation, when I was in medical school and when I got received my training, a big part of it was educating people about health and having people feel comfortable about asking questions regarding their health and their health issues, and also linkages to services. And when I started at the institute, one of the first projects that we did was a breast cancer research program where we went out to beauty salons and trained stylists, hair stylists, so that they could talk to their customers about health, and specifically breast cancer, to raise awareness about breast health, and also to make sure that people were linked to care and linked to services.

And as I moved into the community and done education, I really recognized the need for that and need for trusted information from trusted sources as well. And we know barbers and stylists are ones that are trusted within the communities they talk to their clients, everything people divulge information that they wouldn’t probably talk to their clinicians and physicians about, right? Why not incorporate health within those conversations? Why not give them the information so that they can provide those things? So that has been inspiring for me. Also seeing young people that are interested in health and not knowing which way to go. We know that a lot of times, people of color are weeded out youth. Youth of color are bright, are weeded out in their first year in the sciences. And being a science major and wishing that I had a program like our Health Science Academy when I was growing up that really inspired me to help the next generation, and help students be able to maneuver the different things that they may have and the challenges that they may have when they go into college.

Burpee: We’re seeing, and I know you noticed this too, we’re seeing a flood of health misinformation online, especially online, how is this affecting communities you serve, and what are some of the consequences when people lose trust in medical guidance?

Fraser: Yes, that’s such a great question. And one of the things is that within our communities, dealing with mistrust and dealing with information that may not be, information that that’s that they can really share with others and trust that with the sources where it came from, that that has been a big issue, because our communities often times do not trust the medical professions and do not trust that their clinicians may have their best interests at heart, sometimes based on historical data, based on his based on history in which there were various things done to people of color that has caused the mistrust in society, and when information sometimes changes, as we saw with the covid pandemic, one minute you’re told one thing, and then next minute, you’re told something else, that also caused a lot of the mistrust, and people figured that they needed to go to certain sources, and the internet is the perfect place that people can just type in and get information, right?

I remember someone saying that people may trust Doctor Google, so to speak, more so than trusting what is out there. And one of the things that we’ve tried to do through the pandemic, throughout the pandemic as well, is to provide information from trusted sources. So if there’s there’s information that’s out there that is coming from peer reviewed articles or places of trust, if the NIH is saying something or CDC or and so on, at times, you just want to make sure that there’s consistency in the message and that we can give that information out to our communities, so that people are not looking for things, trying to decipher what’s true and what’s not and and then propagating the things that are not true. Because we can, we see, a lot of things are sent through so. Social media, things are sent through our WhatsApp messages and so forth, so trying to identify those sources of trusted information, things that have been proven and providing that to our community members. So that’s how we try to mitigate the mistrust that we would see in our communities.

Burpee: So you’ve emphasized trusted voices, which is, obviously, is a tool to combat misinformation that already exists. What are some other tools and how can we implement them more effectively?

Fraser: Yeah, I think some of the other tools working with community members that might have been doing that work for a long time and utilizing those agencies as places that you can link people to services, also having physicians and clinicians go into the community as the voices of that that people can trust. Oftentimes, people may stay behind the desk and talk and so on. But going into the community where people see that you do care and so that, and you do understand as well understand the things that are going on in the community, so that when you go in, you’re coming from a point of view of, yes, I have the knowledge, but my knowledge is being applied in a way that really can enhance what’s going on.

And my knowledge is applied with an understanding of the issues that people may face. And it’s not something that we are so detached from the community that we do not understand what is going on, what are the challenges there, as well, of course, utilizing voices within the community as places of trust, looking at certain sources online, if there are articles, if there’s research that’s being done with certain colleges or certain universities, publicizing that that research, once it’s been validated, and so on, and not just picking anything that’s on social media or anything that’s on the internet and using that as the trusted voice or trusted source of information.

Burpee: Culturally competent communication is definitely a cornerstone in your work. Can you explain why it’s so important and how it shows up in both clinical settings and public health messaging?

Fraser: Oh, definitely, one of the things I always like to give this example when we started our breast cancer work in the community and we were speaking to women about promoting this work, as well as creating a brochure for the work. And I think our initial idea was to prevent breast cancer. So the brochure said preventing breast cancer. And when we spoke to the women in the community, they said that cancer is such a negative word that people are not going to pick up the brochure. People are not going to be engaged in the program. And so we change the messaging to promoting breast health. And that was more palatable within the community when we talk about cardiovascular disease and we talk about heart health and what people should eat.

The food plate that we show generally may not look anything like what people are actually eating within our communities, right? Because if we’re dealing with a Latino culture, if we’re dealing with a Caribbean culture, they’re not eating those things that are the traditional food plate at all. Right? So what we did was to have food demonstrations. How do you use plantains, for instance, and how do you use cod fish and take out the salt out of it so that you can make something that’s more healthy and it’s something that’s that is more pleasing to you, that it doesn’t reduce the taste, doesn’t take away the taste like you could add other spices and so forth. So even with food, trying to demonstrate how people can use different ways of cooking and using the things that they’re used to, not necessarily, everyone may not be, you know, a steak of potatoes, right? That’s not probably the culture that we’re in, and really being cognizant of that, being cognizant of language, how language is used, how you would speak certain things, what things are considered okay, and what things may be considered taboo within certain cultures.

When we are doing our mental health work, incorporating traditional things, drumming music in some cultures, and dealing with mental health in that way, those are all the different things, like just paying attention to the people that you are treating, paying attention to people with whom you’re working. With asking them the questions you know, really like asking them what works for you and and sometimes we don’t do that, and we need to really go into the communities with a sense that they are the experts and we are not. If you’re coming from outside the community, you’re not the expert in that community, and listening to the things that they have to say and the wealth of information that they’ve gathered over the years.

Burpee: Listening, listening is so important. And my goodness, you said a very important thing, taking images and words that resonate with the community that you’re trying to serve. That is so important. One of, one of the institute’s most impactful programs that you have trains Brooklyn, barber shops and hairstylist share with us, and it’s a very powerful tool that you’re using there. Very powerful message. Can you walk us through how it works and why it’s been so successful.

Fraser: Yeah, you know, one of the things I said before, and that you reiterated, is to listen to our community members and our barbershop and our salon program when we start out doing any intervention, whether it’s heart disease, whether HIV, we go out into the community and we do a needs assessment or just a listening session, asking them about what they may know about the topic. What are some of the barriers to health discussions, what are some of the things that help them to promote health within the community? Then we develop a program around that, and we continue to ask for their input throughout that program, we also have a health and beauty Council, and that’s made up of community members as well as some clinicians, but primarily community members, barbers and stylists and other members of the community.

And they inform us on things that they are hearing and things that we should be speaking about and things that are important. We have done some needs assessment within the community, where we have asked our community members, what are the priorities that they think we should be focusing on, right? And sometimes, you know, HIV might have come up as something that’s right on top or cardiovascular disease. And when we have been funded to do research, we would pay attention to those things and actually make sure that those things are the things that that we are highlighting and doing research around those, those topic areas based on what the community has said, and then going through different things in terms of having trainings of our barbers and stylists, having them come together and train them on key messages that they may want to give, that they should give on, on various topics.

So for instance, if we’re doing something on cardiovascular disease or heart disease, we’ll have them know their numbers, talking about what blood pressure is normal, what’s abnormal in terms of blood pressure, knowing your body mass index or BMI, putting a scale in the barber shop, in the in the salon, so that people can monitor their weight, having blood pressure monitors within the beauty salon and barber shop, so that people can be able to take blood pressure, but also having the charts so they know where their blood pressure measurement is and how they can track that over a period of time, and then making sure that there are things that they can do in terms of resources, resources, linking them to services, linking them to care, recognizing it that everyone just doesn’t need a physician or clinician or someone to to be linked to. People may need other social services. People may be hungry, and they may need a place to go for food. People may need housing issues, transportation issues may come up, immigration issues and being able to not only educate and promote health within the setting, but also providing them with the resources that are necessary so that they can be linked to services and linked to care.

And then assessing all of that, whether it’s been effective listening to the stories that come out afterwards, like the changes that people have made. One of the things that I remember so vividly is that we did a training with a set of Salon stylists, and we were talking to them about heart disease, and they were talking about we were talking about cholesterol, and someone said, yeah, yeah, we have eggs every morning, and what part of the egg is this, you know, has the most cholesterol? We said, well, you know, eggs, egg yolk usually has poor cholesterol. And they decided that the following time I came back, they said, we’re still having eggs, but we’re having egg white omelets now. And so different things like, literally. That you think, like, okay, yeah, that’s good, that you’ve decided to change this or if you’re walking, increasing the amount of exercise that you’re doing, and different changes that people might have made, and even getting mammograms, right? They might have been like, oh, I don’t want to have a mammogram, but being able to do that, and one of the ways that we encourage that. We had a video that was shown, and the video shared a story of a mother and a daughter, and it was African American mom and daughter, and they had a story where the daughter was encouraging the mom to get her mammogram.

And then we had another video that it wasn’t an African American mom and daughter, but it was a video that was more instructional, like, this is what you go. This is how you go and get a mammogram and so on. And we recognized we wanted to switch videos so that they don’t have to watch one video each month of the three month program, and invariably, everyone went back to the storytelling, the mother and the daughter. And that goes back also to what you’re talking about culturally sensitive, sensitivity and being aware of how things are tailored for communities as well, but in general, our programs provide education, provide help, help promote, promote health, but also link people to services and link people to care.

Burpee: How do you ensure that the information that you’re sharing is accurate, relevant and respectful?

Fraser: Yeah, and a lot of times it’s sources from which we get the information, making sure that we’re up to date with the information. We’re going to conferences and we’re going to seminars and having the most updated information that we’re working with researchers in the field, to get information that’s relevant, information that’s up to date, and then sharing that information with our community members as well. And always some really vetting information, not just you know you may hear something, your articles that are out there that come up with new things, but also seeing whether those things are reproducible, when, when, when you have research that’s done making sure that it’s not just a one shot here, and this is just this one off article over there, but making sure that those things are reproducible.

There are other findings that support what has been, what is being said, keeping updated with the different guidelines. Because if we look at the American Cancer Society, the guidelines for screenings may change over time. With the American Heart Association guidelines for what blood pressure is normal, that has changed a little bit over time. What was considered high blood pressure years ago is not the same that is considered high blood pressure now. And making sure that those things are up to date, that we are up to date with that information, and that we can go out to the community and talk about those things and provide the relevant and up to date information to other community members.

Burpee: You mentioned a change in someone’s eating, their eating behavior from going from eating egg yolks to just egg whites. Is there anything specific that illustrates how this grassroot model has changed someone’s health journey?

Fraser: Yes, we have our we have so many different stories that people have shared one of our barbers had mentioned that over the course of the time working with us, being more aware of heart disease and the in the what needed to be done so exercising more. One Barber, over the course of time, has lost a lot of weight and has been more healthy over the course of the journey, we have had a customer talk, and it’s just one, just mentioning one person here, a customer that has said that his barber has influenced him, and even the things that he’s drinking, telling him that, you know, cut down on this soda, drink more water, and that has helped him in his health journey.

We’ve had a stylist that said one of the customers when we went into the shop, and we’re talking about breast cancer, and we’re talking about doing breast self exams, and she went and did a breast self exam, and she found a lump, and that’s the first time she did it, found it, and then she was able to follow up with her doctor. And it was great that it was not cancerous, but, but she was able to do that just by being in the salon and hearing those things. People have been in our barber shops when we talk about prostate cancer, and then go out and get screened and things are found. And then, and so those are the things that make the work so important. Oftentimes, people are not having those conversations within the community, and it’s important that they’re in a setting where they feel comfortable enough to talk to their barbers and stylists and comfortable enough to under hear the message and take action, because they know that the people that are providing the information information really care about them, right? But it’s more than a business. It’s like they become family and they really care about them.

Burpee: This approach definitely helps to build trust. So beyond Brooklyn, do you see potential, a potential for this model to be replicated in other cities, and what would it take to scale this kind of community based health, education?

Fraser: Yeah, definitely. So first question, definitely see a way of this being a model that can be replicated within the other in other places, within the US, in other countries, and all of those things. I think with what it takes is funding. It takes funding to be able to provide those resources, to provide staffing, to provide all the things that are needed to replicate and test them all in another place, tailor it to the communities that you need to tailor it to. So it’s a funding model, that will help to replicate those things and scale things up to the next level.

Burpee: Why is it important, let’s talk about policy makers for a minute. Why is it important to involve policy makers in efforts to address health disparities, and what are some ways your organization is working to do that?

Fraser: Oh, yes. I always tell people that we can do the work, we can promote health, we can put out the right messages out there. But if they’re, they’re if systems have not been changed, right? And if things are not changed, those structures that are in place are not changed, and the policies are not changed, and the work that you’re doing is somewhat in vain, because, for instance, if we’re talking about social determinants, we’re talking about health and and people do not have access to care, people do not have insurance, and people and people have immigration issues, and people are not able to access care the way that they need, then you can promote health all you want to, but if they’re not able to access those services, then they’re not going to be able to have complete health and they are barriers that are put in place that prevent them from doing from doing that.

If we’re not able to have a health care workforce that looks like the people that you’re serving, that is something that oftentimes could be a barrier as well, and we need policies in place to make sure that that happens. One of the things that we have done through the Brooklyn health disparity Center and the Brooklyn health disparity Center is a partnership of the Arthur Ashe Institute for Urban Health SUNY Downstate Health Sciences University, where they institute is housed in Brooklyn and the office of the Brooklyn Borough President, and it’s a unique partnership, because it’s a community academic and government partnership, and with that, you’re able to provide policy recommendations for the work that We’re doing, and we’ve even involved our youth in our summer internship programs when they’re doing their little research projects, that we ask them to think about policy recommendations that they would put forward so that we can send it out to our legislators.

And those things are important, one and a great example of a simple research project that was done with our students and another community based organization in Brooklyn is that the students went to a pharmacy and what they were asking about translation services that are available and also interpretation services that are available within this area and in Brooklyn, and that information that they gathered, the community based organization was able to take that information up to Albany, New York to advocate for those services within their community. So it’s policy is integrally involved in it, and it’s very important that policies paid attention to as we think about the work that we are doing, that we are incorporating policy, and we do it at different levels. Work with legislators, and we provide information at that level. And. Is always important to just have your legislators aware of what’s going on

Burpee: Based on what’s happening at the federal level, what is your message to listeners about the importance of financial resources for doing this type of work?

Fraser: Yeah, so there are different messages. On one hand, I think it’s important that their work be funded, and that the work that comes through from research that needs to be done, that those research organizations are funded. So when you think about NIH and NIMHD, which is a national National Institute of Minority Health and Health Disparities, that those institutions and those institutes are funded because the work is so pivotal to our communities, were so pivotal to our survival, is so pivotal to health outcomes. So having that work funded is important, and the call to action really is to have community members voice that to their legislators. Community members voice that when they go out to vote and making sure that people are voting and that we are thinking about our civil responsibility, that is just not okay.

You’re voting for a person, but you’re voting really for policies, and you’re voting for things that could make a change and could affect us, and really think about how we can be affected by not voting and by saying, staying silent about things that are happening within our community. So the call to action is really for people to get involved and talk to their legislators, get involved and vote when it comes time to do that.

Burpee: Dr. Fraser, thank you for joining us on this Health Disparities podcast, for your tireless work and passionate work to bring health equity to life in Brooklyn and beyond. For those who want to learn more, we will include links to the Arthur Ashe Institute for Urban Health and our show notes for today’s episode. That brings us to the end of another episode of the Health Disparities podcast from movement is life. I’m Conchita Burpee, until next time, be safe and be well.