00:01
All right, so ethical community engagement. Can you talk a little bit about what it is and why is it important? So what it exactly is, is just having shared power between the community, which is usually looked at as the research subjects and the researchers and making it more or less of a research subject researcher.

00:31
a kind of dichotomy and more into a partnership, having shared goals, which especially in public health is for health equity, health justice, a lot of the times, or just health communication campaigns and understanding that the community are the experts in their own lived experience. And we're just here to help facilitate or help share our resources from

01:00
the universities or whatever company or organization we're working with. And why it's important is because that's the way we get the best research, that's the way we get the best results. Doing a bunch of research that doesn't translate into real life sounds like a waste of time and money for everybody, especially taxpayers, because a lot of our stuff comes from our paychecks and goes into government grants and things like that. So.

01:29
We definitely want to use taxpayers and just use our own time and money and resources in the best ways possible and make sure that we're also not causing more harm than good.

01:43
Right. A common question that came up when I was kind of doing some research before our conversation today, a common question was, who owns the data? Who owns the information? So is there a fine line? When you think about that, what does that look like? What's the answer?

02:06
That is a great question. And that goes into the concept of data governance or data, however people want to pronounce it. I say data. I don't want to take a break. But overall, it's really coming to a consensus and going back to that partnership understanding of seeing who the data belongs to and what's the best way to represent the data and what's the best way to store the data that doesn't harm the communities that you're working with.

02:36
and lets them understand how to access the data because they technically are the data if you're doing research with them in their communities. And we've seen data just do so much harm in the past and present. I just actually wrote a blog post about data governance and was looking at, oh gosh, the name of the organization is...

03:04
losing me, I will send it to you after this. But it was all about indigenous data governance and data sharing. And they were talking about how so much data was used for genocide and for slavery and to take away reparations all through surveying. And I'm also trained as a demographer. So I think about population size and population.

03:31
depletion through genocide and through infectious disease spread or lack of infectious disease control, especially when we think about the indigenous population and the Americas. So we really have to look at data as something that is not neutral. It is something that is essentially living because we are the data. So how do we want to be best represented? And how do we want our stories and our lives?

03:59
and our issues stored and shared. That's what's so scary about this to me, Ebony, is that if, depending on how good you are, you can make data sound like whatever you want it to sound like. You know what I mean? And just giving the example you gave on how someone made it seem like.

04:25
genocide was okay. You know what I mean? Like in the hands, depending on who the hands that data is in or what the, what they want the outcome to be, that is, that's crazy to me, but how do you govern that? Like, are there, are there things in place, you know, or, or, um, is this something that's just not looked at as, um.

04:53
as closely as it should be? So I think definitely in that respect, it's something that is not looked at as much as it should be, but also because we've had such a lack of representation in research fields of people of color and people who have just been historically and currently marginalized through this data that research has done.

05:18
we haven't had the perspectives that we've needed. So now that we have more people who look like us who are in these fields, we can really speak out and say, hey, your data is trash because like you're putting your own bias to it and you're not talking to the people who this data came from. And this goes for quantitative data, qualitative data. I think when people hear data, they just think of numbers but this is also about like language. I have a friend who did her

05:48
a PhD and did some research with black girls in Atlanta. And she sent off her transcripts to a transcriptor service. And when she got it back, she realized like they had pretty much taken out all of the just AAVE that was within these transcripts that were so necessary for what she was trying to do. So she had to go back all through the data.

06:17
re-inputs exactly what the girls were saying because it's almost, I shouldn't even say almost, it is linguistic violence when you take out that context, take out that nuance and try and put a whiteness on this black experience that these girls were having.

06:40
because the way they are expressing yourself tells us exactly. Um, more people need to understand that, you know, and that kind of leads to my, my next question. Uh, Ebony, when you hear things like that, um, and you know, a question I get a lot when companies are, um, certain people are trying to connect more with, uh, African American community or communities of color.

07:07
is they don't really understand that there is a trust issue between the community and you know insert organization even if they are trying to do really really good things there is still that issue of trust how do you um what is your thought on that how do you how do you um maybe combat that it may be maybe it's easier for you because you are in the community community or what how does that work with the work that you do

07:37
So I think there's two parts to that. First one I'll address is I actually still don't feel comfortable at times because a lot of the time I'll have certain privileges coming from a university, coming from a high educational background compared to a lot of the research subjects I'm with, especially since I'm working with youth a lot more in this day and age and just having...

08:06
Understanding my own social positioning compared to who I'm talking to, one, it helps out to understand like, hey, these are the gaps that I know I have in understanding their experience. Even if I'm a Black woman speaking to a bunch of other Black women or some Black girls, like, there are still some social positioning ideas and just social stratifications that I have to be aware of.

08:34
And I think awareness is the first step, understanding that it is okay for people not to trust. It is your job as a researcher to win their trust. Like, this is a part of our job, essentially, if we want to do good research and not being upset, not being butthurt that people aren't trusting us because why would they? I mean, have you, if you do any research on...

09:03
any university in the US, or honestly anywhere in the world probably, you know that there's historical harms that's done to the communities that they are around. And also when people go out to these communities and try and figure out like why don't they trust us, why, what is your relationship with this community or with this organization that I'm working for.

09:32
You're also putting a burden on them to tell you about their experiences of being harmed. And there's a lot of first steps you can take before having to do that. You can go to your public library and pick out a book about your organization or do some Google searches, or maybe there is a community organization that does like anything that's...

10:00
could possibly give you some ideas of the question, the answers to the question that you're asking before you go specifically to that community and ask them, what's your trauma with me? You know? Right, right. No, that's.

10:18
I think that's where maybe a lot of places or organizations are missing the mark because they just wanna come in and do the work. Yeah. And then bounce out. And unfortunately in some communities that it's just not gonna go down like that.

10:36
You know, and I understand maybe there are some time constraints, but it don't, it don't matter to somebody that's just at home. You want, you need me. I don't care about your deadline. Exactly. You know what I mean? Um, you know, something that I I'm really curious to get your opinion on is. You know, the, the lack of diverse data that we have in some areas. I'll give you an example. Um,

11:05
there is a company here in my area that does diabetes research. So they take, they do research around diabetes to improve, um, medications for companies, things like that or whatever. Um, and an issue that they've had is that the majority of their data are from, um, older white men.

11:29
And there's no diversity in that. And one of the challenges that they're saying is, it's just, it's hard to connect with other groups. But I think there's a social determinants factor here because the organization is in one area and.

11:50
not everybody can't get there. You know what I mean? So have you experienced any of those challenges when you're doing your work? And if so, what are there any solutions that you feel can help to improve getting more populations to do research or be a part of it so we can have better health outcomes? Oh, absolutely. I hear.

12:15
conversations like this a lot. And my immediate reaction to what you said was, you can't find black people in the diabetes study. Like, clearly you're doing something wrong. Like, let's be dead ass now. Like, you really gotta sit back and think, like, this is a you problem.

12:45
But like you said, a lot of it can be transportation, a lot of it can be lack of trust. So I think it's really just them saying, okay, so what can we do to have them come here? Maybe you gotta do Uber or Lyft vouchers or see what the bus route looks like getting there and giving vouchers for that with trust. Maybe you need to partner with another organization who's doing the same work. And then you...

13:14
two can work together and use each other's populations to create the outcomes that you want. So I think it's really just putting your foot out there and saying, hey, we're not doing something right. And we need to, one, figure out what we're doing wrong, two, partner with people who are doing the work that we wanna do, and three, figure out how can we get the population to us and not...

13:43
just always sitting with our hands out, like when are they gonna come? When are they gonna, yeah. No, that's so real. And it's funny, what you said, partnering with other organizations, it sounds so easy, it sounds so simple. It almost seems like, man, why aren't we connecting with other organizations that may be doing parallel work or even not all the way similar, but there can be a benefit to everybody.

14:13
I don't feel like it's that outside of the box to do something like that, but I don't feel like a lot of organizations are even going that far outside the box, I guess. Yeah, I mean, there's such an idea of scarcity mindset that goes on in our society, especially in capitalist heavy societies where it's just like, we need to have our own population, have our own things.

14:43
I mean, to me, it just sounds like mine, mine, mine, like a two year old. It's like, we, we all, if we have a shared goal, why aren't we going towards it together? Uh, and there's enough population, there's enough money, there's enough grant funding for everybody to win. So if we get into this abundance mindset and get out of this scarcity, mine, mine, mine mindset, I think we can make a lot of change, but.

15:10
shareholders and board of directors tend to not like that. Me. Yeah, that part can be interesting. I would love to talk more about, you know, the, first of all, I went way far outside what I thought we was gonna be talking about. You know, and it don't matter. It don't matter. It's just so much fun. I have so many questions referring because I do think data is important. I do think-

15:39
gathering data and doing the research is important work. How do we get people to, um, invest in the importance of kind of data collection or the research side of things? I think when we stopped giving them money for doing bad data, tell me more, like if we have.

16:05
grant proposals that are like, okay, you need a community advisory board and it needs to look like this and the power needs to be equitable and you need to showcase that in order to keep getting this grant funding. It would be great, but I'll say especially in the medical side of things, when we're talking about public health, when we don't see that, we're seeing it a little bit more. So like,

16:32
I see the NIH wanting more community engagement in their grants, wanting more diversity in clinical trials, but I still think we have a long way to go. And I think also us just understanding that some of the data collection we do also happens on a day-to-day basis, and we need to also understand that we need to scrutinize that as well. And what I'm particular, what's particularly coming into my mind is...

17:02
uh, teaching hospitals, uh, when you're going in, you're running lab tests, you're, uh, taking patient information. That is data collection. While it might not be research related, that is data collection. But a lot of teaching hospitals are situated in urban areas, uh, in inner cities where all of their patients, for good reason, because there's a lot of diversity to where you can teach.

17:31
how to deal with different patients and different genetic dispositions. But it's also a lot of them don't have a lot of informed consent due to the conditions that they're in or they don't understand exactly what is going on. And a lot of people don't try and tell them. So now you have a lot of people in these situations who...

17:57
may not have the income or resources to really advocate for themselves, and you're just doing a bunch of data collection on them. So, I think it's on one side, the funders who need to do things, but also the people who are doing the data collection and people who are doing data collection that isn't even tied to research. We all need to kind of work together to understand what data collection means or what good data means.

18:29
So that's a good question. What is good data? And when you say good data, what does that mean? What does that look like? So I think good data varies so much just depending on the population that you're working with. And I think the population that you're working with has to define what good data means to them. What good data means to someone here. A black person here in Atlanta, a black woman might be different than

18:58
Black woman in New Jersey, which is where I'm from. But, you know, the South and the Northeast are very different. So I think once you get that community together as partners, who you're going to work with and really see what does good data, what does good data sharing, good data collection, good data storage mean to you, you can eventually see what good data means to this population that you are working with.

19:27
go from there. No, that's real. So, you know, I was, you know, looking at your LinkedIn, you said health equity expert, health justice. Tell me, I would love to know more about your health justice work. You know, how do you utilize that or incorporate that into your current, you know, passions? Yeah, so I would say until within the last year, I would have said,

19:55
health equity all the time, didn't really know what health justice meant. But as I started getting more into policy work within say the last year and a half, I really realized that we need health equity, but health justice goes a lot more to dismantling systems and really getting into that policy and legislative areas and structural racism parts of things where we can really have

20:24
equitable health outcomes, but also changing the way that we do things overall. And that is what I'm pushing for now with my health justice space.

20:37
I tell you what, Ebony, for the longest time, I avoided the politics policy conversation. Oh, I get it. For the longest time. And for just just from an ignorant space, I always put them together, politics and policy. It was always something that I think I still do honestly. So you know, it's easy to do. And I'll just like, nah, I'm not. Y'all can have that.

21:06
I, but you know, the, the more, the more I get into, um, the more I learn, you know, I am a, um, A non-traditional public health professional, you're untraditional, you know, public health professional. So I don't, I don't have a degree in public health. Um, my degree is in, you know, uh, health sciences, but not public health specifically. Um, so I'm.

21:31
as I've been over the past seven years learning more and more about health equity in the space and starting to realize, you know, policy plays a huge role in how we can have equitable and healthier communities. So, with my arm behind my back and my teeth, I'm going in on it to learn more so I can, you know, just...

22:01
just know what's going on out here in these, in these policy streets. But it's, uh, it's interesting. I feel like I was force fed. Understanding policy. I really was not trying to, uh, but ended up out of, you know, man plans and God laughs, uh, started my.

22:27
PhD in sociology, really not even knowing what sociology was technically. I was just like, I had an advisor and she was like, Hey, instead of doing your MPH and then doing a PhD or DRPH, just go get a PhD in sociology and you don't have to do the master's part and you don't got to pay all that extra money. And I was like, Oh, bad. Free degrees, say less.

22:58
And I was just like, I'm just going to do, you know, still public health research. And I already did like social determinants of health research in undergrad. But it was more so. It wasn't politics heavy at all. And then I got into my sociology degree in like my first year was my sociology theory classes. They were like, well, here is five.

23:25
books on how to critique capitalism. Here is the, here is Karl Marx and all his glory writer report. Like, oh, about that. That's not my bag. But no, I learned quick, learned from others who majored in sociology and undergrad and was able to really understand like,

23:54
our economic system and how policies and politics go into creating these social determinants of health overall. And while it was forced on to me somewhat, didn't know what I was getting into, it definitely helped moving forward. No, that's for real. That's real. You know, how, how can we, that brings up a good question. Hopefully it makes sense. But how can we utilize

24:25
data or gather data to improve policy? Like what does that look like? Like what could, you know, what does that, what does that look like in the scheme of improving policy for healthier outcomes? I think what data looks like in policy can look so varied and it looks like many different things. It can look like.

24:52
given an expert testimony at a Senate hearing or even a criminal court defense. And then you're giving the data that you have acquired over your years of training and research. It can look like being an advisor to your policymaker. And essentially in that sense, just being a trusted voice within the policy and politics sphere. But it also looks like

25:22
giving, creating fact sheets, many nonprofits and advocacy organizations will take the research, create it into like a one to two page fact sheets or policy brief, hand it over to their senators or whatever policymaker they are trying to get to and say, hey, we did all this research. Here's the rundown. Let's make some laws.

25:51
No, that's good. That's good. You know, telling the story. I really like that. Yeah, definitely storytelling is a big part of it. Yes. So Ebony, this has been a great conversation. This is my last question. I think I'm gonna give you some time. I'm gonna give you some time. I did this to my guy Felix. I did this with him.

26:20
They just kind of on a whim. Oh, now you're scaring me. My guy, Felix is, uh, he's the, um, health equity officer for, um, Doximity. He was on the podcast, a huge bad bunny fan. And I had him bad bunny and health equity. What they have in common, right? That's the one. We knocked it out the park. Shout out to bad bunny.

26:49
Uh, Dr. Johnson here is a, is a world renowned amateur powerlifting. I don't know if you could be world renowned and amateur. Powerlifting and health equity or just say health justice. What do they have in common? So I can actually tell the story about this. So I have a coach who.

27:16
is one of my good friends and he's the one who convinced me to get into it. Literally begged me for months to just try it out and I was just like fine, fine, whatever. But so during that time I was working at Emory University doing opioid overdose prevention epidemiology work and I would tell him about my day, tell him about all the stories I had and he was like that like he was

27:46
his mind was blown because he didn't really know much about addiction research or substance use research. So I was like, okay, well, let me put a lot of this into things that you can understand. You know, and I gave him a full lit review of addiction studies on exercise. So it was just a bunch of stuff on body dysmorphia in the powerlifting and just

28:15
bodybuilding community and exercise addiction and what that means for men's mental health. And how can we change this and how can we change the rules in the federal committees? Yo, let me give you some facts. I'm sure he was not expecting that. I had fun looking it up.

28:43
So all of that to say, there's definitely a lot of crossover, especially in physical activity, epidemiology and mental health and what that means with exercise and also just a body image and what that means. I think there's a spectrum where you could exercise too much and hurt your body or not exercise at all and hurt your body.

29:13
way too little research on the people who exercise too much. Oh, of course, of course. Which I see on a regular basis now because I got to tell people like, maybe you should sit down. Pump the breaks. Here's the lit review I did. Oh, that's so cool. Oh man, Dr. Johnson, this has been so fun.

29:43
Thank you so much for being on the podcast with me. For anybody listening or watching, if they want to learn more about you, connect with you. Where can they find you? They can find me on LinkedIn at Ebony DJ or on my website at www. Awesome. Well, Dr. Johnson, thank you so much and everybody.

30:11
Thank you for listening to the Healthy Project podcast. I'll holler at you next time.