Measuring What Matters With Community-Led Monitoring


In this episode, we discuss the practice of community-led monitoring, and how this practice can help inform and influence collaborative change efforts.

To learn more about community-led monitoring, we talk with the International Treatment Preparedness Coalition (ITPC), a global network that works to achieve universal access to HIV treatment and other life-saving medicines. One of ITPC’s core strategies is to “watch what matters,” which includes supporting data gathering and analysis that’s centered on and led by community members, and reflects the issues and questions that are most important to people living with and affected by HIV.

To share about what they’ve learned from their community-led monitoring work, we hear from ITPC’s Executive Director Solange Baptiste and Citizen Science Lead Krista Lauer. They share how data practices like community-led monitoring can unearth community access barriers and pain points within a system, and how that information can be gathered to inform advocacy efforts and policy change.

Ways to listen: You can listen below or on your preferred podcast streaming service, including Apple Podcasts, Spotify, Simplecast, iHeartRadio, Amazon, and other podcast apps.

Please find a transcript of this talk further down this page.

Resources and Footnotes

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The Intro music, entitled “Running,” was composed by Rafael Krux, and can be found here and is licensed under CC: By 4.0.

The outro music, entitled “Deliberate Thought,” was composed by Kevin Macleod. Licensed under CC: By.

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Podcast Transcript

Welcome to the Collective Impact Forum podcast, here to share resources to support social change makers working on cross-sector collaboration.

The Collective Impact Forum is a nonprofit field-building initiative that is co-hosted in partnership by the nonprofit consulting firm FSG and the Aspen Institute Forum for Community Solutions.

In this episode, we discuss the data practice of community-led monitoring, and how this practice can help inform and influence collaborative change efforts.

To learn more about it, we talk with the International Treatment Preparedness Coalition, otherwise known as ITPC, which is a global network that works to achieve universal access to HIV treatment and other life-saving medicines. One of ITPC’s core strategies is to “watch what matters,” which includes supporting data gathering and analysis that’s centered on and led by community members, and reflects the issues and questions that are most important to people living with and affected by HIV.

To share about what they’ve learned from their community-led monitoring work, we hear from ITPC’s Executive Director Solange Baptiste and Citizen Science Lead Krista Lauer. They share how data practices like community-led monitoring can unearth community access barriers and pain points within a system, and how that information can be gathered to inform advocacy efforts and policy change.

Moderating this discussion is Collective Impact Forum executive director Jennifer Splansky Juster. Let’s tune in.

Jennifer Splansky Juster: Hello, everyone, and welcome to today’s podcast. I’m Jennifer Juster, executive director of the Collective Impact Forum.

I am really excited for today’s conversation with two leaders from ITPC. ITPC is a global network of people living with HIV, community activists and their supporters working to achieve universal access to HIV treatment and other life-saving medicines. There are many reasons I’m looking forward to our conversation. I want to name two in particular.

First, most often here at the Collective Impact Forum and often in social impact circles here in the United States, we look within our own national borders for examples of interesting work and promising practices from which to learn. When we think something is working well, and I’m using air quotes, more often than not we try to share it with folks outside the U.S. While there are times and places for that for sure, I don’t think that often enough we have been looking at folks doing amazing work outside our national borders here in the United States, or outside the global north for learning and inspiration. In this conversation we’ll be doing just that, learning with folks from the ITPC whose network spans across West Africa, North Africa, and the Middle East, Latin America, and the Caribbean, South Asia, and Eastern Europe, and Central Asia.

Second, I’m also excited about today’s topic, community-led monitoring. This approach to monitoring, learning, and advocacy holds great relevance for folks doing collective impact work where we know that shared measurement or using data as a collaborative to learn, improve, and hold each other accountable, is a really high priority.

Joining me in today’s conversation are two leaders from this work. Each will introduce themselves more fully in a moment, but it’s my pleasure to welcome Solange Baptiste, executive director of ITPC, and Krista Lauer, Citizen Science Lead with ITPC. So welcome, and I would just love to start by asking you to introduce yourself more fully and tell us a little bit about what brought you to your work with ITPC. We can start with you, Solange.

Solange Baptiste: Great. Thank you so much for having us at the podcast. I am a wife. I am a mother of two. I am the executive director of the International Treatment Preparedness Coalition, or ITPC. My background is in public health and community systems strengthening in a broad sense. I am from Trinidad originally, which is a very tiny island in the Caribbean, and I’m currently sitting in Johannesburg in South Africa where ITPC is based. I’m a little bit cold because it’s very cold in South Africa these days. I’m just happy to have the opportunity to be on the podcast. Thanks.

Jennifer Splansky Juster: Wonderful. Krista?

Krista Lauer: Hi. Thanks for having me as well. My name is Krista Lauer. I am the Citizen Science Lead at ITPC Global. I have a background in HIV and human rights, including in LGBTQ+ rights. I’m originally from Canada but I’m speaking with you today from Seattle in the United States. My portfolio of work at ITPC Global is the Watch What Matters strategic focus area, which includes community-led monitoring. Really happy to be here today.

Jennifer Splansky Juster: Wonderful. Tell us a little bit more about ITPC. A little bit about your founding, your mission, and bring us up to date.

Solange Baptiste: Yes. ITPC, a mouthful, it’s the International Treatment Preparedness Coalition, and I must say we are not so savvy with the name because it doesn’t translate very well. It’s a mouthful, and it’s a sort of a running, sort of internal joke, which I’m clearly now putting out in the public.

It was an international meeting that happened in 2003, so ITPC is actually celebrating its 20-year anniversary this year. So, woo-hoo. Wehad a meeting in 2003 in Cape Town in South Africa, of about 125 activists from 67 countries. That was a time when the cost of ARVs, or antiretroviral medicines, were just prohibitively expensive for people living in the global south, and so there was this, I would say, ragtag bunch of people who were just very upset with the inequity because medicines were available in the U.S., were not as available in the global south, and they were also very expensive.

This meeting really was called the International Treatment Preparedness Summit. Then we took out the word summit and made coalition, and that’s how you got ITPC.

But the whole idea was to really band together and advocate for drastic reduction in the pricing of the medicines and to work with manufacturing and really try to figure out how to get competition and open up the markets for generic medicines so that people who need medicines can actually get them.

We had a long pathway through many different evolutions of an organization, you can imagine through 20 years, to where we are today. We moved through the Collaborative Fund, which was a fund to be able to give small grants really, but instead of a top-down model, it was really a bottom-up model, which looked at how people across the globe in their regional groupings were able to decide what their issues were and then say, OK, let’s figure out our own governance and let’s use these small grants. So small grants, high impact because who was making the decision were the people who were most affected.

Then we moved through many different iterations of trials. We had the three-by-fives, so there was this WHO initiative of trying to get ARV therapy to three million people by 2005, and we used to see when you’re missing that target. So we had this missing the target report on different themes across the years. But as we’ve grown now, we’ve landed on three strategic focus areas and Krista can talk more about that.

We really just were built on love. I would say we started off by just looking at the injustice that was happening across the globe when your friends are dying, and you have the medicine, and they don’t. It’s just in the DNA of ITPC to really just—silence is an action. Silence is a violation. At that point, you have to do something. I think that’s how we—that’s our story.

Krista Lauer: Yeah, and I’ll just build from there. As Solange mentioned, we have three strategic focus areas, but the center, the foundation of all of our work, everything we do is really centered around the idea of treat people right. We love the word treat because it can mean treatment in the context of health, but it can also just mean your right to health, the way that we show up for each other.

So we kind of do that in two ways. We really center it on providing evidence-based scientific health information to people so that you can understand your own health and then advocate for your own needs.

For example, if you’re a person living with HIV, do you understand what happens if you miss a dose of medication? What happens if you have a treatment interruption? How does that affect your body and your health? Once you’re empowered with that information, you’re better able to ask for the services and standard of care that you deserve.

The three strategic focus areas that we use to bring that vision to life is, first of all, Making Medicines Affordable, or MMA. This is where we work to make sure that the medicines and the services that people need are available, they’re either free of reasonably priced, and they’re accessible.

The second is Watch What Matters, which is my portfolio. This is where we work to monitor what are the barriers to staying healthy. What is impeding people from having access to the medication and those services that they need, and we also raise the alarm when we identify those problems. Some of these problems could be things like medicine stock-outs or discrimination by a health service provider when you’re trying to access services.

And the third and final part is Building Resilient Communities, or BRC. This is really how are we going to achieve all of those things that I’ve just named. We have to nurture communities that have capacity to organize, understand how to take action, where are the entry points, how is policy made, who’s making those decisions, where’s the money going, and using all of that collective information to make the change that they deserve. So that’s us in a nutshell.

Jennifer Splansky Juster: Thank you. And one of the things I also understand about your model that I’d love you to share a little bit more about is that you’re a network or networks. We mentioned all of the geographies where your networks are present. Can you talk a little bit about that, your network of networks structure?

Solange Baptiste: Yes, absolutely. I think if you followed our story before, back in the day I would say ITPC is a network of 15 regional networks, and I would just list all the ones. We’re in 2023 now in a very different world and even then, we were able to see that the old way of having bricks and mortar to show that yes, we exist, and we are valid, and we are credible, look, our sign, we exist, has changed.

So we have what we call a global activist network. That mission to achieve health and social justice through community engagement is really seen across the globe but through different kinds of strategic engagements. From ITPC Latin America and the Caribbean, to ITPC West Africa, ITPC Middle East and North Africa, ITPC Eastern Europe and Central Asia, and ITPC South Asia, plus any other sort of engagement. Individuals make up that network, other partnership organizations that we have worked with, small community-based organizations, grassroots, grasstops, and we also partner with normative agencies, and we’ve worked with the WHO. We’ve executed work with them. We are very much involved with UNAIDS, the Global Fund, the usual players that you would expect within this space.

I like to call it organized chaos. If you think of, OK, we’re all over the place but we have strategic ways of managing our engagements and getting the work done.

Jennifer Splansky Juster: That makes sense, the strategic chaos. That’s a fun way to refer to it.

Krista Lauer: We get emails at every single hour of the day, awake in every time zone.

Jennifer Splansky Juster: There you go. Always on it.

Today, as I mentioned, we want to dive in a little bit more about to your Watch What Matters portfolio, and in particular, this idea of community-led monitoring, which I understand to be a community-driven equity-centered approach to using data to inform the work of ITPC and your partners, and effectively advocate for addressing the barriers to care for people living with HIV. Could one of you please give me your formal definition of community-led monitoring so we can all share that? And talk a little bit about why this is so important.

Solange Baptiste: Formal definition, I will hand over to Krista.

Krista Lauer: Well, let me just start by saying, as community-led monitoring has become more and more popular, there are many, many definitions, but I would say for me, and for us as ITPC, it’s really using community data to monitor and quantify and qualify the extent of an issue, and using that data to advocate for change.

A very concrete example I will give is if recipients of care, people accessing services, come to a health facility and have a long wait, in the past they would say perhaps to a health care provider, “Wow, I really had a long wait today.” And that would sort of be an anecdote. But we have found that once you develop indicators and you begin monitoring specific data, you are better able to qualify and quantify the extent of that issue. So all of a sudden, you have data that says, you know, in the last quarter at this health facility, the average wait time was six and a half hours, and in these 15 health facilities, in this district, the average wait time overall was between four and eight hours. And all of a sudden, you can really understand the extent of a problem and that provides an entry point to really getting a collective of people to understand what’s the root cause of this issue and how can we better address it?

So really, it’s an approach. It’s a tool that we use to give a platform to the extent of challenges and barriers that recipients of care in our context are facing and using that data, harnessing the power of that data for problem solving.

Jennifer Splansky Juster: And tell me a little bit about, Krista or Solange, when we call it community-led, is it residents and folks living with HIV that are identifying what needs to be measured?

Solange Baptiste: Yes. I think it’s always helpful to kind of say what community-led monitoring is not. It’s not community-based monitoring, so people listening to this might Google like community interventions or community things, and you’ll see that there’s a mix. Even the Global Fund only recently stopped using community-based monitoring, which has the implication of where the monitoring happens, not who is leading the charge.

So the way I think of it is if you need to change an indicator, who do you ask? That’s where you actually identify where the power lies. Community-led monitoring is actually led by communities, and as Krista said, it starts at the pain point. What is the issue that you are facing in your lived experience? That is the thing that you want to monitor.

This actually started for ITPC in the lived experiences of people living with HIV in West Africa who were facing tremendous and extensive drug stock-outs and medicines were not there. So they would go, and they would say I came to collect my medicine. They’ll say, OK, well, this is out of stock so come back next week. And then when you raise it to a policy or government level, they’ll say we don’t have any stock-outs according to our system and our supply chain. It’s sitting in the reserves. But it’s not actually at the point with the clinic where the person who needs the medicine can collect it.

Now what do you do? So people then took pencil to paper and started kind of saying, OK, name of medicine, how long it’s been out of stock, and that then turned into something that was much more formal and systematic and it’s really this data over a period of time. So you’re checking the same data, the same indicator over a period of time. So like how you would check your blood pressure. This is my blood pressure. You don’t want to just check it once in January and then once in December and say, yeah, I’m fine. You’re checking the same thing across a period of time to see trends.

I’m saying these things as an important part because often the issue is is this data credible, is this data, as Krista said, anecdotal, is it a one-off, is it just you found one rude person who was having a bad day and everything’s not that bad. You guys are just making it up. And then the criticism will come that the data may not be generalizable, or what is your sample size. But this about trends and data, and you will find that it really helps to round out the whole data picture when you get community data from people who are actually living those experiences. Did I even answer that question?

Jennifer Splansky Juster: Absolutely. It’s really helpful. Krista, did you want to add to that?

Krista Lauer: I mean I think Solange puts it so well. I really think the routine data collection is a really important part of it. I think sometimes people misunderstand community-led monitoring as a one-time snapshot, but this is data. It’s the same checklist. It’s the same indicators you collect every month often, and that’s how we can see what the trend is.

And as Solange said, who is defining what these indicators are. They are communities. So they won’t necessarily be what the priority is at health facility level. It could be wait times. It could be discrimination. It could be—we saw in the context of COVID lockdowns. Sometimes people were waiting outside a clinic for their medication because they wanted to avoid crowding. All of a sudden, all of your neighbors and family members are seeing you publicly waiting outside this health facility. Maybe you weren’t open about your sero-status. So we’re monitoring now what levels of privacy are still accessible in the context of COVID. So again, who defines what the pain points are and who defines what we’re monitoring? Communities themselves.

Jennifer Splansky Juster: Yeah, that’s a really powerful example, Krista, and as I’ve learned a little bit more about community-led monitoring, I have learned about what you called the four-part cycle of education, evidence, engagement, and advocacy, and how that full cycle is essential to have the power of the promise of community-led monitoring so could you tell our listeners a little bit more about the full four-part process. What does that look like in practice?

Krista Lauer: Yes, indeed. Ooh, the power of the promise, this is good podcast lingo. Well, if you go to our websites and we’ll speak to this again but especially, you will see our classic infographic that has four quadrants in it really in a circle, and we always begin the community-led monitoring process from education.

We work in health. For us this is really understanding the science behind the disease. I would say science didn’t used to be a controversial topic but, in this day and age we—let me state very clearly for the record we are an evidence-based organization so if we’re working the context of HIV or COVID or tuberculosis or be it what it may, we really want to make sure that everybody is on the same page about what is the science behind the disease. How does it affect your body? How does it work? From there we then go into what is the normative guidance? What is the gold standard for the kind of care you need to address this illness?

We often go to the World Health Organization like Solange said to say, for instance if you’re a person living with HIV, what is the standard for which you need viral load test results. So do you understand why you need a viral load test in the first place, and according to the global standards, how quickly should you get that information, and from there we’re better able to explore community pain points. So now that we understand the science behind the disease, what are some of the challenges that you’re experiencing?

So, for instance, Solange already talked about drug stock-outs. I need this medication. I understand why adherence is so important and what will happen to my body if I miss a dose. Now we can zero in on these are some of the big community priorities, especially gaps and barriers, and so that’s really where we start with education.

The second piece is evidence. Now that we have identified those pain points, we develop those into indicators so how can we really monitor and measure the extent of those barriers and gaps, and this is where we work to define what we’re going to measure on a monthly basis.

Now from the ITPC perspective we really suggest less is more when it comes to indicators. You can monitor anything and everything. You could ask people’s eye color. You could ask what you had for breakfast. You could ask a million things. Less is really more. The more indicators you have, the harder it is to do that data analysis on the monthly basis. It could be a fire hose of information coming out you. It’s also more expensive the more indicators you add so we really like to zero in and be very, very deliberate about what are the key pain points and only have 20 to 30 indicators including a mix of qualitative and quantitative indicators.

The next piece is engagement so now that we have all of this information, we have a ton of data, we conduct an analysis. What are the trends telling us? What are the major issues here? And we bring that information to a group of stakeholders that we call a community consultative group or a CCG. This is a structure of usually about 10 to 15 members. They include government organizations, civil society organizations, health facility managers, health care providers, members of key populations, people living with HIV networks, maybe some research institutes or independent experts, and that group as a collective takes this information, looks at the data and tries to understand what are we learning here, and importantly, what can we do to fix it? What are the strategic opportunities to either facilitate advocacy actions or to implement a change?

And then the final piece of the cycle, number four, is advocacy. So this is where we’re working with policymakers to fix or improve services or systems or laws or practices that underlie these problems.

Ideally the whole process here is really about fact-finding, not necessarily fault-finding. We’re not necessarily here to name and shame as our first step. We’re really trying to understand what are the driving factors behind these barriers but if we run into problems trying to execute the fixes or changes to this, then we will escalate and move to advocacy to try and make sure that those gaps are addressed.

So for us, the end of this entire four-prong system isn’t collecting interesting data to tell a story. It’s did we fix the problem that was identified by communities? Did we make their lives better? So the measurement of success here is really achieving concrete change.

Jennifer Splansky Juster: Do you have an example that you could share of a situation where that cycle sort of saw itself through to a policy change that benefited folks living with HIV in their community?

Solange Baptiste: So maybe I can jump in here and then Krista can give you one that’s more recent but the one that I like to—that comes to mind the most is we had a project that was funded by the Global Fund in West Africa, and it was a regional community treatment observatory so a lot of words but it’s an observatory because that’s sort of the French equivalent word to monitor, to observe, and the treatment is at a regional level so what’s happening across 11 countries.

Short of this very long story because this was a three-year project but the one thing that always sticks with me is the ambassador for—and I think many people would know Ambassador Birx now given our COVID experience in the United States. Ambassador Birx was very interested in the data that was coming from the civil society representatives in the room during the country operational planning and process for Côte d’Ivoire as a part of PEPFAR. So PEPFAR as you know is the U.S. response to HIV and is sort of money that goes bilaterally to these different countries.

So in Côte d’Ivoire there’s a negotiation, and in this room we have this guy from Abidjan who is speaking saying here’s the data that we found, and he was talking about the actual user fees to be able to pay for services in the public health system in Côte d’Ivoire, and the ambassador was very taken aback for services that should have been free. The level of granularity, the amount of detail and information that was grounded in people’s lived realities is what startled her, and she says we need this kind of data, and to be honest, that is how community-led monitoring got into the country operational guidance for PEPFAR and also then took on a sort of new life because this is the kind of thing that should inform our programming because if you have less and less money, you have to know where to put that money to have high impact, right?

So you need to then hear from the people who are actually having those experiences, and so that turned into her talking with the government in the U.S.-Côte d’Ivoire negotiations, etc., but a circular being sent by the Ministry of Health to be able to say that this should no longer be happening, and it changed the policy.

We have several examples like that that take you from the start of the story, so education. You’re supposed to know that you’re not supposed to be paying for this service as Krista went through the quadrants, right? And there were indicators that were like, OK, so let’s go find out are people paying? Why is it that she’s not going? Why do you have to pay for that diagnostic test or that blood draw or something that should be free, and then the engagement and the advocacy that then turned into a change, and that’s where success lies for CLM, at that very end point. So I think that’s a good example.

Krista Lauer: Yes, absolutely, and we’ve seen all different kinds of policy improvements. I mean just a couple very quickly. In Côte d’Ivoire we worked with partners on CLM and ultimately the Ministry of Health used CLM data and evidence to eliminate user fees that were being charged to people living with HIV. That was a significant barrier to care.

In Malawi managers at the Ministry of Health used CLM data to justify expanding working hours at public hospitals and making sure there were increased resources for HIV testing during the COVID-19 pandemic.

We’ve got lots of interesting case studies of what’s happened. One of our more recent ones that always stick with me is HIV testing rates among sex workers in Malawi. We saw testing rates across the board really take a dive in the context of COVID but what was particularly interesting to us was that in Malawi we saw a bounce back to pre-COVID testing rates among sex workers that tripled the previous number, and we were trying to understand what was it about community-led monitoring—this was at our monitoring sites—that helped make that happen, and part of it was the CLM data collectors, we had sex workers themselves who were collecting the data and by being visible in community, asking people about their experiences at the clinics, being in the clinics doing record surveys and interacting with health facility staff, the relationships that were built and the openness of the health system to vulnerable populations and to sex workers themselves plus the information that was more readily accessible to sex worker communities through the role of the data collector really had this impact that was greater than the sum of its parts.

Jennifer Splansky Juster: Yeah, those are both really illustrative examples so thank you for sharing. As I listen, it begs the question for me of how folks at the community level are actually collecting the data, like who’s doing the data collection, what sort of—and I’m using again sort of the air quotes—capacity building that’s happening to support that at the local level. Can you talk a little bit about what that looks like?

Krista Lauer: Yeah, certainly. I’ll take this one and then, Solange, please feel free to jump in. As I just mentioned, the role of data collectors is really, really important. If you think about—have you ever left a business and at the end they say please give us a rating, oftentimes in the United States now it’s even on where you swipe your credit care, how was your service today, rank me from one to nine, and you’re literally standing in front of the person who’s giving you the service so how open can you be?

With community-led monitoring, the fact that peer data collectors are the ones who are getting information from communities is really critically important because you tend to be more open and honest with your peers. We’re also finding the data collectors that we’ve recruited often from networks of people living with HIV, networks of key populations also have additional leadership roles in the communities. Some of them are religious leaders. Some of them are village chiefs. Some of them have other roles in testing so that’s very impactful, and also you can be more open with a peer. Who’s collecting the data, that’s sort of the answer to that, and who is analyzing the data, so we do have partnerships with local institutions and persons who have expert data capacity. We have a large program right now in Malawi and South Africa, and we have partners at the University of Cape Town who are experts in qualitative and quantitative data analysis but what’s important for us here is that there’s also a transfer of skills and capacity to our local implementers so there’s a shared data analysis. There is some skills transfer in looking at- of the raw data that’s been collected, how are we now going to pull out the trends and issues.

A final piece I’ll say about understanding how this looks in practice, we are working to actively build community capacity on data collection and analysis including through what we have called the CLM Academy. This is a one-time-a-year, three-day meeting where we identify highly capable CLM experts and champions and bring them together to dig really deep on technical issues and to build the community with each other including on issues such as integrated qualitative and quantitative data analysis. In October of this year we’re actually doing our second CLM Academy that’s going to be specifically focused on Francophone experts in recognition of the need for more CLM experts and champions in the west, north, and central African region who can be further trainers, training of trainers who can really sort of speak to the level of integrity and credibility in the CLM model that we’ve really pioneered and make sure to spread that methodology further. Solange, I don’t know if there’s anything else I’ve missed that you want to add.

Solange Baptiste: I think the only thing I want to underscore is the importance of communities really being leading. It’s one thing for a community person to do the data collection and then take it back to the other important person and say I’ve done my job. I really want to reiterate the importance of communities from the start to the finish leading this initiative of monitoring and using the data because that has come up in several conversations because not every country context is as easy for communities to enter clinical spaces and to get the ethical clearance, the permissions, the authorizations to get into clinical records, for example, and so the leadership of communities has to be really massaged from the beginning if you will.

There must be a whole on-ramping and I think what Krista was saying with respect to the process, there’s a whole host of work that happens before you start collecting data and figuring out your indicators, and that’s the political understanding because if there isn’t government buy-in, what you’re doing is trying to push yourself into a very clinical space and that becomes very difficult for effective CLM to take place.

So when you have governments really understanding that this is a win-win, that by allowing communities and recipients of care into the space to help co-create solutions to the problems that we’re facing, and that this is actually a win for the ministry and for the government, and it’s not them coming to find fault with us and name us and shame us and all the other sort of sometimes irrational affairs that they’ve come up with, then you have an onramp. So now you’re able to come in, get access. You have ethical clearance to be able to find the thing.

The one thing that I would add in there, there’s something called a community consultative group which Krista talked about in the four quadrants. When you get these data, you need to then understand what is it saying. What are the insights that we can glean from this, and what’s the advocacy plan? That sort of sometimes very fun and vocal hashing out happens in a version of a community consultative group so that’s usually an existing, pre-existing group that’s already there, but it has to be led by the community. Can you imagine a community going into other meetings where they get five minutes on the agenda and they try to explain the data as opposed to you as the community organizing a meeting and inviting ministries or district or provincial health officials as well as medical staff supervisors and communities and normative folks across UNAIDS or wherever to then discuss what the issues are, and I think that’s where the sausage is made, and we often kind of skip over that and then, boom, you have a policy change. There’s a lot of hard work, a lot of meetings, a lot of slides, a lot of this is what we’re seeing, how can we change it that happens in there.

Jennifer Splansky Juster: Thank you. I have to imagine that—and you’ve alluded to as we’ve gone—some challenges in putting this into practice at a community level. Are there other challenges that you would lift up that communities have faced so listeners can think about what to anticipate as they might move in this direction?

Solange Baptiste: Yeah, there are a ton. This I think is a relatively new space. You know why? It’s because you’re pushing community data to have a level of credibility that is almost parallel and equal to their traditional academics. So you have your randomized control, science Ph.D. people who come up and say, well, the study shows and the power and the p-value and this and that, and then you have communities saying, well, our data shows, and there’s often this sort of, well, that one of course we can trust blindly, and then this one we’re like poking holes in everything, and so CLM is relatively new in becoming a discipline but because it actually gets at the core of power and governance, it has a lot of political nuance to it. So you’re trying to get something that is politically feasible but also technically sound and scientifically sound, and I think that’s the balance and where the challenge lies.

So you have more authoritarian governments who will say there’s no way I’m letting a community person get access to this kind of stuff, and then you have more friendly governments that will say, yes, of course I can see how this will be a win for us, and you even then get clinical staff and ministry folks of the Ministry of Health saying, you know, they keep us on our toes.

We have an actual report that’s called They Keep Us On Our Toes, and who said that was really important because he was saying, he was from the ministry saying that this is really helpful. We’re finding actual issues in our data that have been corrected now because community people have come in, and we’ve been able to correct and adjust some of our own issues. There’s more, I’m sure. Krista, go ahead.

Krista Lauer: Yes, how long is this podcast again? No, I’m kidding. Certainly there are some challenges. I think a couple of the main ones for me right now is, as Solange said, community-led monitoring is sort of starting to get to the top of the agenda of some really important multilateral funders and policy agendas, and I think the shiny piece of it is the data. Everyone gets excited about, OK, we could have more information, we could have data that’s centered really in communities, and there’s this huge push to get to what are the indicators, and I need three months of data collected ASAP but there’s a lot of preparatory work that needs to go into getting to that space.

As Solange said, there needs to be briefings for all of the partners, what is community-led monitoring, why are you doing this, why would a community person be coming into a health facility, what are they looking at. I think the idea of monitoring for any of us, if you think about someone coming in to monitor you doing your job, do you really like the idea of someone looking over your shoulder as you’re doing whatever your work is?

So really having that foundational conversation about what is the purpose of this, why are we doing this, what are we collecting, who is it serving is very, very important, and it’s kind of an art and a science to do it. I mean there’s certainly the science and the methodology behind setting up monitoring in a credible way but there’s also the art of diplomacy, of having those conversations making sure key stakeholders and gatekeepers are on board to really make the methodology work.

I also still think there’s a little—there’s a problem with the power and balance of how we view communities as experts, and I think there’s still this tendency to want to have the official panel and the official experts, and then at the very end sprinkle a little community on top. We would love to see the hard quantitative data, the scientific data, but then I’d love a quote from a person, or we’d love a five-minute testimonial after we’ve given 25 minutes to these other more expert speakers. I think that is not serving any of us.

Communities are experts in their own right, and they should be at the table, and they should have a leadership position in addressing the critical issues of today, and I think until we can achieve that mindset and that shift toward whose data counts, whose expertise is valuable, we’re never going to get to the kinds of solutions and the kinds of work to address core issues that we could if we really took community data and community leadership and expertise seriously.

Jennifer Splansky Juster: Yeah, thank you, Krista and Solange, and I think it’s reminded me a lot of the conversations that we’ve been hearing here in the U.S. around research justice and data justice, and I think this is a very helpful conversation, and not easy but practical and specific way to really shift that power when it comes to research and data justice, so just so important.

Most of the folks that are listening are thinking about doing collaborative work on other issues, other health, other environmental, other social issues in their communities. Could you share a little bit about how this approach can be applied to other social or environmental challenges?

Solange Baptiste: Sure. I think it’s really important to understand that although we are speaking as folks that work primarily in HIV but in health, and we have had CLM in TB, CLM for hepatitis C. We have many reports. When you go to that, you’ll see the range of health disease areas that we have applied the model, but the important thing is the model.

So our model can be applied to anything, and I think it’s appropriate to understand what community pain points are so whether that is police brutality or voter fraud or what is the changing in the, I don’t know, bees, they’re no longer in this area or a particular animal or species that you’re tracking changes, and often it’s the farmer, as in f, a, r, m, e, r—sorry, I can’t say that without thinking pharmaceutical companies—the farmer, the agricultural person who’s sitting in the field who will see the difference in the climate or see what’s happening with a certain animal or insect that is there and say, OK, something’s not right. So it’s almost like citizen-level surveillance.

It’s—what do you call it—it’s community-led monitoring and it’s a model that can be applied anywhere. As long as you understand the pain points, communities can walk through the education, well, it should be like this, something’s not right, let’s check on it, and then let’s engage to change. I mean that’s essentially the model, right? So I think if you Google, and Krista could probably give you some more concrete examples of what that looks like applied in other spaces.

Krista Lauer: Yeah, for sure. Again, like we work in the health space but looking around at some other ways people have used this approach, there’s been a lot of interesting work in climate already on community-led monitoring. I’ve seen some studies on forest use and displacement. There was an interesting study I was looking at just this morning about community monitoring of coliform bacteria in drinking water in Lake Tanganyika, and they trained local citizen scientists to do low-cost measurements of sort of what’s the level of bacteria. They did follow-up sampling and analysis, and then they were able to inform their other community members like local people impacted by this about what they were finding but also level that up to regulatory bodies about these are some of the high-risk conditions, and then also, I love this part about coming back to the community to validate what kind of mitigation actions might work. Given everything that you’ve found, do you also think this would be a helpful solution?

We see it in CLM applied in the context of sexual and reproductive health and rights. Again, you can develop a monitoring checklist if you have the World Health Organization-developed consolidated guidelines on SRHR and rights of women living with HIV so communities can say if this is—if these are the guidelines, this is how I would want it to be expressed in my community so here’s my checklist, is that actually happening.

I would say the only thing about the approach is it really does require a level of advocacy maturity in the community movement so it’s one thing to understand the science or the basis or the normative guidance for the science for how much bacteria should be in my water and to collect the data but then what do you do with it because sometimes it can be very uncomfortable to use that data for advocacy.

We would love to always be in a community consultative group where everyone equally agrees that the data is credible, and we should take action. What do you do to hold people in power accountable if you’re not getting to change?

I would say our advantage in the HIV movement is that we have 40 years of experience of having those hard conversations and of being strategic about where are the entry points, where should we put our efforts, and so there certainly some fields that we’ve looked at that don’t necessarily have that maturity yet in how do you advocate, how do you come up with an agenda, what is the campaign, and so that’s maybe an area where we would love to also see some more investment. It’s a critical part of the approach. It’s something that’s often just assumed that, OK, once you collect this data, you’ll automatically know how to get a decisionmaker to take action on it, and data alone is not enough. You can present very compelling data to a decisionmaker, and it won’t be enough. I’m sure all the listeners on this podcast already know so bringing in that full range of skills and abilities is very critical.

And I think that’s where I’d love to see more collaboration across movements, learning from each other, tying into bigger platforms. There are a lot of high-level meetings now that are happening on things like pandemic preparedness. That’s not just a health issue, that’s a financing issue. That’s a security issue. That’s a climate issue. As the world heats up, we’re seeing mosquitos expand to other areas and different diseases expanding to places that we’ve never seen them before so I really think that CLM is an opportunity where we can sort of collaborate across our previous silos.

Jennifer Splansky Juster: Yeah, and I really appreciate you calling out the importance of the whole cycle, and having the skills and the training and the ability to use the data for advocacy to see the change which is of course ultimately the point.

So as we wrap up, I just want to ask if there’s anything that we haven’t talked about that you’d really like to share with the listeners about community-led monitoring, recommendations or other things to think about.

Solange Baptiste: Maybe I can just jump off of the point that Krista just made and wrap up my thinking around community-led monitoring. I really think that if you take a step back and really try to understand community-led monitoring within the wider context, it is around community-system strengthening, and sort of what was described before about building the resiliency within communities and building communities themselves to be able to carry this work out.

So you can’t just assume that people have skills, staffing, infrastructure, and resourcing to just go collect data, and so, many governments and donors often just want the data to be able to make their own decisions but what we’re saying is please make space at the table for communities. They’re not just coming as recipients or victims of the system but are equal partners at the table, and we’re bringing data, we’re bringing solutions, and the idea of co-creation not just being validation of a construct or an idea that was made up in somebody’s head in Geneva like this will be a good idea, let’s do this thing, let’s go consult a few communities and let’s co-create, that’s not genuine co-creation.

Genuine co-creation is we’re in the middle of a crisis like what happened in COVID, and you need communities to tell you what they’re seeing on the ground, and you need communities to innovate at the space of handwashing and figure out how to get water and social distancing concepts and spread messages, etc., across so really focusing on co-creation.

And then just even if I took a step further out in terms of context, so there’s community systems but we are all within now very, very fiscally tight spaces as countries, and at the individual and community level as well. Everybody is making do with less and having to do even more. I think it really then kind of falls in this category of what other solutions can we bring to this great crisis that we’re seeing now from climate as Krista said all the way to social protection, you know, the unhomed, the food insecurity, what’s happening with the agriculture, literal soil is not able to produce anymore, and the idea of public investment and public goods and needing to finance these things is ultimately where these conversations end. Who is going to fund community-led monitoring? We don’t have enough money at the government level. The Ministry of Health barely gets any money from the budget, and so we have to come up with solutions in this time that are outside of what we normally do, and so the concept of all contributing, all deciding, all benefiting, this global public investment concept, and community-led monitoring being an important part of that puzzle in terms of the contribution, the benefits, and the decisions that need to take place now.

Krista Lauer: In my own personal experience I have worked in participatory research quite a bit including qualitative and visual methods such as photovoice, and I think there are many methodologies to capture what’s happening in a community. On the other hand I’ve done a lot of advocacy around financing and policies and how are we supporting the HIV response, how should we structure it, but I have never seen anything that connects those two things better than community-led monitoring.

So we are monitoring, we are collecting the whole data story, not just what is happening for viral suppression in HIV but why is it difficult to adhere to your medication. Here’s a photo of my fridge. All I have in it right now is water. Because of inflation rates in my country I’m no longer able to buy the level of food I need to adhere to my medication—all the way to taking that full picture to policymakers, to decisionmakers, even at a very local level. Community-led monitoring is also very effective for pinpointing a very, very local issue.

A very quick example, one of our health facilities in Malawi where we were monitoring, people of course are concerned about privacy in the context of stigma, and on HAART collection day, people would wait in a public area with an individual health card that was a different color from everybody else’s so basically if you’re seen sitting in this public area with a health card that’s a certain color, everyone knows that you’re there to collect your medication and by extension that you’re living with HIV. So our data collectors very quickly said, look, it would make a huge difference if we could just have a more private area where people could wait, and by making that change at one local health facility we’ve seen an increase in uptake of people being able to access their medications.

So that very specific local change is so impactful for people, and we can also find that addressing some of those broader issues can be elevated to regional and national and sometimes global conversations to make solutions better for people’s practical lives. So I just think it has enormous potential and we’re excited to invite more people under the big tent, and let’s join forces and work on this collectively.

Jennifer Splansky Juster: Well, with that, how can folks continue to follow your work?


Solange Baptiste:, and Our websites are alive and active, and we’d love to hear from you all. You can also reach out to either Krista or myself through the podcast connections and contact information if there was a specific collaboration that you’re interested in as well.

Jennifer Splansky Juster: Krista and Solange, thank you so much for spending time with me today. It has been an absolute pleasure and wonderful learning experience, and I know that everyone listening to this podcast will take a tremendous amount away from your wisdom so thank you so much.

Solange Baptiste: Thank you.

Krista Lauer: Thanks for having us.

(Outro) And this closes out this episode of the Collective Impact Forum podcast. If you are interested in learning more about what was discussed, you can find links to resources in the footnotes for this episode.

We would like to acknowledge that this episode was produced and edited on the unceded, traditional lands of the Coast Salish people, including the Duwamish, Suquamish, Stillaguamish, and Muckleshoot tribes. We honor with gratitude the land itself and the past, present, and futures of these tribes.

The Intro music for this episode was composed by Rafael Krux and our outro music is composed by Kevin Macleod.

In Forum news, we’re excited to share that registration is open for several upcoming online workshops that are part of our “Essentials for Collective Impact” series. On September 28, we have “Facilitating Collaborative Meetings.” On October 13, we have “Navigating the Dangers to Collective Impact.” And on October 26, we have “Building a Culture of Trust in Collective Impact.”

Please visit our events section of our website at if you would like to join any of these upcoming online sessions.

This is Tracy Timmons-Gray, Associate Director here at the Collective Impact Forum, and your podcast producer. I want to say thank you so much for listening, and we look forward to connecting with you more in our next episode. Until next time, we hope you are safe and well.


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