[INTERVIEW]

[0:00:49] JW: Welcome to another great episode of The Public Health Joy Podcast. So today, we have a special guest, and that is Heidi Berthoud. Heidi is the founder and principal consultant at Heidi Berthoud Consulting, LLC, where she works with public health departments, in health and social service nonprofit organizations conducting community health assessments, program evaluations, and helping teams collect data that they can use to improve health. Heidi, I am going to turn it over to you, for you to tell us a little bit more about your story and your work. Usually, I tell people how I met my guest. I’m like, honestly, we haven’t known each other that long. We met each other through the Internet. 

 

[0:01:39] HB: No, that’s great. Thank you so much. It’s so wonderful to be here. I’ll tell how we decided to be on the podcast together, and then I’ll go into my background. But Dr. Washington and I have met through a public health consulting entrepreneur group with Dr. Charlotte Hughes Huntley who I met last year, and she was my business coach for a little while. Dr. Washington and I had some good synergies, and we were like, “Let’s have a chat, let’s get on a Zoom call together.” So we did, and we ended up starting to talk a lot about data, and data sharing, and then decided, “Let’s pause, and we’ll just talk about it on a podcast.” That was your decision. I love that. So that’s great.

 

So we’ll just continue our dialogue together today. So thank you, so nice to be here. Heidi Berthoud and I have a background in public health. I have a master’s degree in public health from the University of Washington. I’ve been working in the field, oh my gosh, it’s like 20-plus years now. It’s kind of hard to believe. My background really varied, so I’ve done everything from research ethics. I worked on an IRB at an academic IRB. I worked in a research institute, where I learned a lot about complex project management, but also qualitative data collection, managing complex projects, and data collection. I did a little bit of international global health work as well. Then, I also worked at a reproductive health nonprofit, startup. It was national, but I was on the Washington State team.

 

So kind of a whole lot of different things in the public health sphere, definitely interested in public health initiatives. I always did consulting on the side, and I had the opportunity. I was invited to work with some indigenous organizations, which I held that in very high esteem. I was really honored to be invited to do that work. So that just sort of got me thinking about, maybe someday I could start my own business, what would that look like? How would I do that? There was just an opportunity during the pandemic, the organization I was working for really went through some upheavals, and it was time to move on, so I did that.

 

It kind of pushed me into starting my own business. It was a time of a lot of change for a lot of people. It didn’t seem like a very smart time to quit my job in a pandemic, but I’m glad I made that move. I’ve been able to connect with so many other consultants like yourself, doing really interesting work, and it’s been such a valuable experience. I know you talked about what brings you joy and work in public health. This has been a really – this has brought me a lot of joy, starting my own business, and getting to work with communities and clients. So a lot of my work is community-based data collection, and then bringing that data to the community in a way that’s really accessible. Then, I also have some clients I work with, helping them sort of build their own internal evaluation capacity, and using the data they have to tell their story in a meaningful way that reflects their communities. I’ll stop there. That’s kind of a long-winded, yet maybe brief, given I’ve been doing this work for 20 years. But really passionate about data sharing, and community data collection.

 

[0:04:43] JW: Yes. You brought up so many different things, being in the field for so long. But I want to go back because one of the things you mentioned about working with indigenous communities, right? I’ve been reading, or I have read – it’s a book called Decolonizing Methodologies. I actually read it this year. I was like, my brain – it just had me questioning my whole life, like questioning my whole research life. Then I had to go back and think about, okay, working with black communities, working with indigenous communities, working with vulnerable communities, the way that we’ve been traditionally trained to do research has been such a colonized way of doing things. It’s like, how do we shift? How do we change from doing it the way that we’ve been taught is the right way to do it, right? “The right way to do it.” When there are so many different ways to do research, and especially when storytelling is such an important part of data collection and data interpretation and how we share that data, and how we relate to that data. Because I tell people all the time, especially when I’m working with students, I’m like, the data doesn’t mean anything until you interpret it, and you share the story behind what the data means.

 

[0:06:07] HB: No, I love that. I mean, I feel like you had so many good questions in there. I had so many directions I could go. I think one of the biggest lessons for me, especially being trained in academia, which I know you’ve had that training to. I’m coming to this as a white woman and being invited to work in these communities, you have to go in and listen first. That is not always how the training goes. You’re trained to come in as the researcher, or the expert. I think that starts at the very top. The way the grants are written, the way they want you to fulfill the grant requirements, the timelines. One of my favorite sayings that I’ve learned from working in indigenous communities is it takes the time it takes, and that does not work with a CDC, or you know, you name it. That does not work with a federal grant timeline. I think it’s a really complex process, but also finding a way to listen first, how can you work in a community to collect data that will be meaningful and tell their story, but maybe can also fulfill some of these requirements.

 

I mean, but honestly, I think, ideally, there are some really great granting organizations out there now that are starting to do unrestricted grants, so they don’t have a lot of requirements. I think that’s part of the decolonizing process. How do we grant money to a community? So I worked in this work in Washington State, it’s called an Indigenous Birth Justice Network. The unrestricted funding is from the Perigee Fund, and they wanted to give funding to indigenous communities to revitalize their own birth practices to reduce infant mortality and maternal mortality. They essentially said, “We think you know what’s best for your community, so we’re just going to give you some money. Please go do those things, and let us know how it goes.”

 

My role was the evaluator, so it was really fun because I got to go in and evaluate how the technical assistance was going. I got to interview women, and the various people working in the programs. They elevated to me their indigenous data collection practices, which were usually around food sovereignty. They had moccasin-making classes, they had art, all these things that didn’t fit in a traditional data collection lens, or maybe in a traditional evaluation lens, for sure. So it was really fun to be creative with them, and just kind of use that evaluation platform to elevate the cool things they were doing, which exactly what you said, it tells the story of their work. Then, they are building community, and they are improving maternal health and infant mortality rates through all of these protective practices that they’ve always had in their community, but they’ve never been able to use them.

 

That’s one example I think of where telling those stories is really important, but also building in that capacity for them to do that work, and that that is valued. Because just because it’s not something that maybe a grant outlines that you can do doesn’t mean that it’s not valuable or it doesn’t have merit in the community.

 

[0:09:14] JW: Yes. That is mind-blowing to even know that there are organizations out there that will grant you unrestricted funding. Like, how would you even know that that’s a thing because we’ve been so traditionally conditioned to believe that the funders have a particular way that they want things? And the way that they want things is the only way to do it, but that also comes with these funders because they are in positions of power. That comes with these funders recognizing that they are in positions of power and taking the momentum and the action to do what it needs to take in order to put that power elsewhere. Put that power directly into the communities, and that’s what we need. It’s like, how do we get the funders and the people in the positions of power, the organizations in the positions of power to start transforming their mindsets around the money that you have access to, and where that money needs to go, and what the outcome could be if we started to do research a little bit differently.

 

If you started to treat that money a little bit differently and have unrestricted funding so that these communities can do what they need to do with it. Because even when you think about it as a funder, when you see the art, when you write the RFP, it’s like – you are automatically assuming that you know what’s best on how to handle this money, and the order that things need to go in, and then the step-by-step process. Like., who have you talked to? Did you talk to a community in the development of this RFP? Was a community member at the table, in the room with the board and whoever else? Who was there, and who made the decisions around even writing the RFP, or deciding who gets the money for this RFP and the response to the RFP?

 

For those who may be listening, RFP is request for proposals. So you might hear RFP or RFA, request for application. Those are some research and grant terms that were thrown around. But that’s what that means. So, we have to start looking at it, like you said, from the top, those funders and what they are doing with the money because whoever’s got the green has a lot of the power.

 

[0:11:28] HB: So true, but even – I mean, the RFP process itself can be so burdensome for communities to apply for those funds. So can we rethink that process? If you do have someone at the table, are you listening to them? I mean, I completely agree with you, and I think going back to the decolonizing, it is a very colonizer approach to say, “We think we know what’s best, or we have money, and we’re going to disperse it based on our criteria that’s unrelated to your community.” I mean, all of that is trying to disentangle that, I think is really huge.

 

I will say, there’s an organization here in Seattle, where I live called the Urban Indian Health Institute, and I was writing a grant for them a couple years ago. It was a CDC grant, and it was actually giving indigenous communities funding to revitalize community food programs and revitalize some of these programs that directly improve their health. That was a big shift for me to see that from a federal agency. But I agree, I think as funders, and even I think just from a bottom line dollars and cents perspective, if you’re going to give money to something that is homegrown, that is going to really have buy-in and continuation – continued support from the community. That seems like a much wiser investment long-term than just these one-year or two-year projects where it might not be the best fit for the community, but they really need the funding, and then it’s not sustainable. So yes, I mean, I think those are all ways to think about decolonizing, the whole process from start to finish.

 

[0:13:05] JW: Yes. I think that when we talk about where research meets relationship, a lot of people think – might tend to think that the relationship-building process is between the researcher and the community members, or you know, the people who are boots on the ground, maybe your research coordinators, or whoever, maybe your stakeholders, or whoever might be the case. But it starts with the funders, it starts with those organizations, the relationship process starts way before community see any money. It starts with the people who are at the top. So if we have not set those expectations, set those standards for what we want to see, as far as the funders and the organizations who are at the top, then it’s going to start trickling down whatever has been set forth. That’s what’s going to trickle down. 

 

It’s very hard to be towards the bottom of the line, and you’re trying to do things differently. It’s very challenging, because then, you’re trying to fight back and forth between how do I do what’s right to serve the community, but I still have to try to meet these expectations of the funder, or whoever I’m working with, whoever’s above me. It’s a balancing act, and you can be caught in a hard place. It almost makes it out for me. I’m speaking for myself. It almost makes it like, I don’t even want to deal with the top. How can I just go straight to the community and just serve them? Let me just get in there, get in the trenches with the community, and wherever they need me, that’s where I will serve. If they’re like, “We don’t need you, Dr. Joyee.” I’m like, “I’m stepping off.” Because there’s time to listen to what they are trying to tell me.

 

[0:14:48] HB: Absolutely. I think there are communities that are not getting some of these resources because they have made that choice that you’ve said. They’re not interested in trying to pursue this. Because of all, the rules and the challenges. I think something, this is true in the indigenous communities I’ve worked in. I think it’s true in all kinds of communities, lots of immigrant communities. There are a lot of things already happening in those communities. It’s not like everyone – people aren’t just sitting around waiting for things to happen to them, they are already have all kinds of resources in place, and systems, and things that work for them, and ways that they support each other that we, as non-members of the community might not be able to see. It’s also, I think, really presumptuous to assume certain things, certain communities.

 

But I think having this conversation with funding agencies, the agency I mentioned that does unrestricted funding, they are a foundation. I think that is starting to change kind of in that foundation level, that philanthropic level. I’m hearing it more. I don’t know how widespread it is, but I think that’s a really powerful way to support communities, and authentically, really support communities. Not just in name only.

 

[0:16:05] JW: Yes, yes. The other thing about it is, it’s not just the funders. It’s like the whole system of research, all the different players that are involved. I know you mentioned the IRB, earlier with the Institutional Review Board. There are a lot of challenges there too, a lot of barriers, especially when it comes to community academic partnerships as well. Now, the IRB has their job, I’m not knocking the IRB, okay. But I’m just saying, why do we have to go through an academic institution in order to make sure that research is ethically done? Can we have a community IRB? Are there different avenues that we can still make sure that our research is ethically done? But make sure that we are engaging the community in a much better way that serves them well throughout the entire process? Because a lot of academic researchers, they respond to that RFP, they get the grant, they get the money, then they go to the community. Then they say, “Hey, we want to do this thing.” Then they go, “Well, they go to the IRB first, and then they go to the community to do the thing.”

 

The community does not know what’s happening behind the walls of the IRB, because the academic researchers have already done whatever needs to be done in order to make things happen. That’s a whole thing of breaking barriers, breaking trust. Because then, it seems like the IRB is like this, I don’t know, a wizard comes to mind. Like the IRB is like the eyes of research. You make your request, and they may grant it, they may not, it just depends on what they’re feeling. If they decide that your research is ethical, and then you got to go back and forth for possibly months at a time, depending on what happens. But the community and some IRBs do have community members, of course, who are on IRB boards and things like that. But there are still some processes, and procedures where we could have the community more engaged in the process so that they know what the IRB is, and what that looks like prior to you putting an informed consent in their hands, and being like, “Will you sign this, and do our survey, and participate [inaudible 0:18:15]?” Do all these things. It’s like, where’s the transparency? Where is the honesty in that, the integrity in that when we’re trying to build relationships with these communities while we’re trying to do research?

 

[0:18:30] HB: Yes, it’s so true. The history of why the IRB is around is solid. I mean, it came out of like the atrocities during World War II. But I agree, I think there’s a level of complexity there that is necessary maybe for medical trials, but it could be very different for true community-based research. And I think, too, we should all have some level of ethics that we’re applying when we’re working in communities, even if it hasn’t needed to go through an IRB review. I think that is really important to think about as well. But I agree like community-driven research, there’s community-based participatory research, which CBPR is another. We’re throwing out all these research terms. But often, that is exactly how you said. Money comes, and there’s approval, and then you go to the community, and that’s just a backwards way of doing it.

 

In my opinion, and in my experience working with communities, and I think it doesn’t foster trust, and it doesn’t foster real relationship. A lot of communities feel like it’s like an extraction economy, like data are just being taken. That’s something I’m really interested in. There’s a great website, oh my gosh, I can’t remember but it’s based out of Chicago. It’s essentially like, I think it’s something like why are you researching me and it’s all about communities in Chicago that are just kind of over researched. I wish I could remember it off the top of my head, but it’s a great –

 

[0:19:56] JW: I think I know what you’re talking about. I feel like it’s a tab that I had open on my computer for three months, and I keep going back to look at it. And now, it’s probably still open. I’m going to look for it.

 

[0:20:10] HB: Yes, totally.

 

[0:20:12] JW: [Inaudible 0:20:12] 

 

[0:20:15] HB: I think that’s another decolonizing piece that I’ve learned from working with indigenous communities is, if we’re gathering data, we’re giving it back. How does that look? How do you give it back? How do you produce something that’s super usable for the community, or meaningful for the community? How do they see themselves in whatever you’re producing from the data you’ve collected? Keeping that transparency really there all the time, as much as you can, I think is a big part of it. So that’s where I’m really interested in reporting, that’s highly visual, highly interesting. I don’t want people to feel like they need an academic degree to read the report. Quite frankly, I don’t want to read another 50-page, single-spaced, 11-point font document. I’m not sure that’s the most meaningful way to get data out there. It doesn’t really make it super actionable for anyone. There’s maybe a certain time and place for that. But that’s something I think is really – I think it’s changing a lot too for the better, but that’s something I’m really passionate about in my work.

 

[0:21:21] JW: Yes. As you were talking, I was thinking about the little words that we use those two to four letter words matters so much. Because when you say, when academic researchers say, “Oh, this is my data that I collected.” If you work with communities, it just stirs your spirit, it just like burns your nerves, right? Because it’s not your data. It’s their data. It’s the community’s data. It belongs to them. They opened up their community, they open up their doors to bring you in, and you completely disrespect, and disregard everything about that community when you say, “Oh, there’s my data.” 

 

[0:22:07] HB: Yes, it’s so proprietary. It goes straight back to just extracting from the community and walking away. That’s where I think, circling back to the unrestricted funding idea. If it is very community-driven and led, maybe they do need someone who can come in and help them design a study or design some sort of intervention, but it’s all very there and transparent. Sometimes, the only restrictions in those funds are that you have to give the data back to the community or it has to be a transparent process, so I totally agree. I think, again, that also erodes trust in communities, certainly with research and with researchers.

 

[0:22:48] JW: I feel like I want to see an RFP or a funders announcement that like, you have to say, “This is your data.” In everything you do, everything you say, you have to say, “Oh, this is your data. This is your data. We are responsible for collecting your data, and we are going to make sure that this continues to be yours, and that everything we do is in respect to your data.” Like if researchers just had to keep saying it over and over, at some point, it might stick. You know what I mean? There’s a shift in our language. If we can start shifting our language, we can also start shifting our actions as well. I had a situation the other day where I was in a virtual room with a bunch of academic researchers, and we were talking about surveys and working with the community. I will say, we need to make sure that these community members have input in the survey that they see the survey, that we make sure that we’re creating and designing the survey alongside with them. One of the academic researchers was like, “I don’t think that the community can design and create the survey. I don’t think they have that level of skill or expertise.” I was like, my brother, you are wrong. Like you are absolutely wrong. They can do it. They can do it.” 

 

I was thinking, I was like, people who are doing public health research needs – now, there’s this old – well, I say old because I’m old, but there’s this older campaign. I want to say it was maybe Gatorade or something, where they were like, anything you can do, I can do better.

 

[0:24:34] HB: Yes. What was that? 

 

[0:24:36] JW: I think it was Gatorade, I’m not sure. But I was like public health researchers need to know anything you can do, your community can do it better. They can do it better than you.

 

[0:24:46] HB: Yes. It’s so true.

 

[0:24:48] JW: I don’t think there are enough people, especially academic researchers who truly understand that concept. Like you don’t have that community’s expertise. You don’t have that communities lived experience. eggs. A lot of those academic researchers are coming from – they might be two hours away, or they might be from another country, or another state, and they have come to this university for their $60,000, $70,000, $80,000 a year job. And you come to this community and say, “Oh, I’m going to give you a one-time $25 gift cards.” They say, collect my data when they really need to collect your data. So it’s just all of that together, it can be so sickening once you see the light.

 

Once you see the light, it just makes you so mad. But people don’t know, this is how we’ve been trained. For those of us who do work with communities, and do community engaged research, and a lot of these other things, we have to take those opportunities. When we start feeling the nerves come up, and our blood starts boiling, we have to take that moment to educate. Even in that situation, I took that moment to educate. Then once I explained how it could work, and what it could look like, then the academic researcher was like, “Okay, that makes sense.” A lot of us have not been trying to think that way.

 

[0:26:11] HB: So true.

 

[0:26:12] JW: Even in storytelling, I was thinking about when you’re trying in the academic world of how to do research, they teach you to be objective. I’m thinking, I’m like, I’m a black woman from Mississippi. I feel like it’s impossible for me to be objective about anything related [inaudible 0:26:39] because of my experience. Like, I can’t do it. I’m like, if you disagree, I’m sorry. But y’all, I’m like, “How am I supposed to be objective? How are any of us supposed to be objective, especially when I’m working with communities of people who look like me?

 

[0:26:55] HB: Right. Right.

 

[0:26:57] JW: How can I be objective about that?

 

[0:26:57] HB: Such a good point. I think sometimes alongside with that objectivity is this idea that you’re supposed to be like emotionless and unengaged as the researcher. But I just – I mean, your example you just gave as a black woman in Mississippi, like that brings with it all kinds of things that you can’t just – and I don’t think you should, like try to put it the door and just bring some sort of neutral self. I mean, I think – and that doesn’t mean that the data collection is going to be bad, or that you won’t be able to share good data with your community, but it is a shift in thinking. I saw that too with the indigenous communities I worked in like they do need to bring themselves to the table, they do need to bring their lived experience. Then, I mean, we can get on a whole other conversation about like, I do think it’s important to pay people when we can, and when it’s equitable to do so, and not just continue to gather data from people, and have them share all their lived experiences without some sort of, yes, reciprocation. I think that’s a whole other topic.

 

[0:28:00] JW: Oh, yes. 

 

[0:28:00] HB: But I agree. I think, you know, we’re often not doing randomized controlled trials for a new drug. We’re doing community-based data collection. I think bringing empathy, bringing soul, and spirit to the work makes it richer, instead of trying to weed that out somehow.

 

[0:28:21] JW: Yes. Yes. The storytelling is so powerful, especially when you’re able to start breaking down those barriers, and you have built that trust. For me, in my experience, when I have worked with communities, especially communities of people who look like me. When they see me, the barrier is a little bit broken. Just because I’m black, and I walk into another community in Mississippi does not mean they welcomed me with open arms. But when I’m able to share different things from my experience, and they can say, “Oh, yes. I went through that too” or “I know about that particular instance of something that happened.” Or I’ll even give an example. There was a project that we were working on, and we were talking with grandparents. Grandparents who are raising their grandchildren. I walked into the room, and they’re kind of looking at me like, “Ugh. Who is this person?”

 

I’m dealing with a bunch of older black women. So they’re looking at me like, “Who is this little young thing coming up in here? What she want from me?” When we started doing introductions, I asked them to share their favorite song when they were born, when they were growing up. I’m like, let’s just keep it simple. I just want to know your favorite song when you were growing up. We had the best time just singing, singing songs, because it brought them back to a place that was joyful. I could share – because I knew a lot of those same songs because I am a part of that community. So a lot of the songs that they knew I knew some of the same songs, I could sing along. That right there was just a moment of trust building that I hadn’t seen it [inaudible 0:30:03]. That’s a way to break a barrier and build trust with your community. None of my textbooks that I spent hundreds of dollars on said anything about singing songs. And the stories that they tell, it was like, I busted a floodgate. The story that they told after that were just amazing.

 

[0:30:27] HB: Oh my gosh, that gives me chills. It’s true, that’s not in textbooks. That is so powerful. You know what’s so cool is that their memory of that is going to be, hopefully, probably positive, really powerful. They’re going to remember singing the song. I mean, that’s I think just as important too, is not going into communities, having this moment, and then it’s done, it’s over. They’re going to take away a positive experience, and maybe next time, if there’s a need to gather data in their community, they might feel positive about it. Hopefully, they’d have a similar experience. But I think that’s so powerful, knowing how to like meet the community where they are, and in that moment. And, you know, sometimes that might need to be suspending data collection, in the middle of it.

 

I was running a focus group, and we had some parents start talking about some really powerful, and horrible experiences that their children had been having with substance use disorder. I really made a point – we continue to focus group, but then I made a point of like, kind of talking to my team afterwards, and like doing a little debrief, just to make sure we were all okay. We sort of met with those parents afterwards, and did a little check-in, and like, “Are you okay? Do you have what you need leaving here today?” I think just being mindful of all that, and being a human being about it is so important. Because sometimes are – I’m collecting, and you’re probably collecting too very powerful stories, and sometimes it’s really hard. 

 

When I’m interviewing indigenous women, I hold that very sacred, like that’s sacred story time, and I don’t take that lightly at all. I didn’t learn that at textbook either. I didn’t learn that in my coursework, and I think that’s so important. I love that you shared that.

 

[0:32:15] JW: Yes. Yes. We are going to get ready to wrap up. This has been an amazing conversation, by the way. But I don’t think I’ve really asked you any questions.

 

[0:32:26] HB: This is how our last conversation went.

 

[0:32:28] JW: Exactly, we’ve just been talking. But of course, I can’t let you go without asking you the signature question, which I know you talked a little bit about in the beginning. But what brings you joy in your work?

 

[0:32:41] HB: Right now, what brings me joy in my work is working in communities, and bringing their data back to them in a really accessible way. I’m doing that through community needs assessments. Even just doing the focus groups in the communities, there are synergies that happen, people start to work together, even right in the focus group. That is bringing me a lot of joy because I know a lot of public health leaders, and public health folks have had – it’s been a hard couple years in the pandemic, and people are tired, and people are burnt out. So finding ways to help kind of reinvigorate communities around the ideas of public health, and the principles of public health, and helping public health departments put out a really beautiful report to kind of show their needs, and where they want to focus their work. So that’s bringing me a lot of joy.

 

[0:33:32] JW: Awesome. If people want to reach out to you or contact you, how can they get in touch?

 

[0:33:38] HB: My website is hberthoudconsulting.com. So my first initial, my last name, consulting. I’m also on LinkedIn, you can find me at Heidi Berthoud on LinkedIn. I am on there a lot. I also have a company page on LinkedIn. Those are probably the two best ways to reach out to me and you can message me directly on LinkedIn. But yes, I’d love to connect and talk more or talk about ways that maybe you’re thinking about trying to collect data in your community or something like that. So love to reach out.

 

[0:34:07] JW: Well, thank you so much for being a guest today on this episode. We will probably need to have a part two. I’m just thinking, I’m like, “We’ve been talking about so much good stuff.” I’m like, “Ah, we probably need a part two.”

 

[0:34:20] HB: Sounds great. Sounds great. I’m here. I’m here for it.

 

[0:34:23] JW: But thank you so much. This will wrap up another episode of The Public health Joy Podcast.

 

[END OF INTERVIEW]

[0:37:16.0] JW: I am so grateful for this time we get to spend together. If you enjoyed this episode, I need you to subscribe, rate, and leave a review. For more information on transforming public health research into positive community impact, visit www.joyeewashington.com. This is where research meets relationship and I’ll see you next time on The Public Health Joy Podcast.

 

[END]