December 6, 2023

Meet The Scientist podcast: An interview with Joyeeta Mukherjee, Ph.D., associate director at IAVI, on the intersection of community and science

In this episode of Meet the Scientist, IAVI's podcast series, we explore the pivotal significance of community engagement in global collaborative research.

Meet the scientist - Joyeeta Mukherjee, associate director of access, research, and development at IAVI in India

In this episode of Meet the Scientist, IAVI’s podcast series, we explore the pivotal significance of community engagement in global collaborative research. Tune in to discover how IAVI is highlighting the importance of community partnership and engagement, an integral part of the product development process.

Joyeeta Mukherjee, Ph.D., associate director of access, research, and development at IAVI in India, joins us to share insights into her work at the intersection of community and science. Join the conversation as we delve into the critical role of community engagement in global scientific pursuits. Plus, learn how innovative use of gamification and experiential learning is being used to simplify complex scientific concepts. Do not miss this fascinating exploration at the forefront of science and community collaboration!

See below for a full transcription of the podcast.

Hello, everyone, and welcome to another exciting episode of our podcast — Meet the Scientist. I am Soumya, your host, and a communications specialist at IAVI coming to you from India. Today we have a very special guest with us, Dr. Joyeeta Mukherjee.

Dr. Joyeeta Mukherjee is an associate director at IAVI in India, where she works at the intersection of community and science. With a Ph.D. in biochemistry, extensive understanding of global health, and nearly a decade of experience in community-based research, she leads intricate studies, understanding and addressing community needs and user behavior, decision-making drivers, and innovative engagement strategies. She has also worked on piloting and evaluating innovative behavioral intervention based on gamification and experiential learning, aimed at simplifying complex scientific concepts, understanding, say-do gaps and other nuances of end user behavior. Woohoo Joyeeta, that is an impressive body of work, welcome to the podcast.

Thank you so much, Soumya, for the kind introduction and my pleasure to be here. Look forward to an engaging conversation. Thanks a lot.

So, Joyeeta, before we get into the scientific details. I am curious to know about your journey. You have dedicated nearly a decade to IAVI, what inspired you to stay for such a significant period? And in what ways has IAVI played a pivotal role in shaping your career?

Thank you, Soumya. I did not even realize that it has been so long that I’ve been at IAVI. But I must say that it has been a wonderful and enriching experience. You know, in the 9 years that I have now been here in this organization I have been exposed to a huge diversity of scope. The breadth of domains that are covered in this organization kind of fascinated me, so IAVI, being a product development organization, kind of focuses on end-to-end of product development.

The different projects focus on the different areas. Some would be on epidemiology, some would be on behavioral science, others on immunology, virology, discovery, science. We also are engaged in clinical trials, moving to the end parts of access, and how you know a product uptake kind of is looked at working with a variety of stakeholders. So, all of this kind of gave me a very, very wide range of exposure, which helped me learn. I could explore my interests, sharpen my strengths, work on some of my weaknesses. Also, I could develop new interests and then build on them.

So, while working at IAVI, starting from leading projects being involved in small projects to moving to a role where I am now playing strategic roles in multi-stakeholder, multi-regional, multi-country programs. It has been a big evolution for me, and I’m also fortunate to have worked with a very talented set of colleagues and having very supportive mentors. So, I think all in all, it has been a very engaging and diverse experience. I look forward to learning more in this journey with this organization.

We are so happy and thrilled to have you, Dr. Joyeeta. So, our topic for today is both timely and fascinating. You know, the role of research and science is evolving at an incredible pace and global multi-stakeholder collaboration and partnership are at the heart of this transformation. Joyeeta, could you share your thoughts on this changing landscape, and the value for collaboration which is happening at the current moment.

Indeed, Soumya, you very rightly put it, the world of science is evolving at a very rapid pace. You know we see new avenues, new findings, new strategies, new challenges, and also how these challenges are then addressed, and new solutions coming up on a regular basis. This happens not just in one disease, but in different disease domains, like HIV, TB, emerging infectious diseases, etc. If I just take an example of HIV and in the prevention space of HIV, there are so many different products that have been worked on. We have a whole plethora of options that are at different stages of development, long-acting injectables, broadly neutralizing antibodies, vaccines, taking an example of the HIV vaccines. We have experimental medicine vaccine trials now coming into the picture after so many years of vaccine research happening in HIV. This is a very, very new space to be in. So, a lot is changing and evolving and of course, for the better. Now all of this does not happen in isolation, right? As you very rightly mentioned, collaborations are key here, as we are working on all of this, we see global scientists coming together, industry joining hands, regulatory bodies coming into the picture. But you know we must realize and be cognizant of the fact that at the heart of all of this is the community for whom and with whom the research is conducted. So, the primary stakeholder, who should be engaged effectively and meaningfully in the entire process, is the community.

Totally Joyeeta. I completely resonate, you know, with everything that you have said, because I do believe that being an integral part of this research means, you know, community importance in recognizing their importance because at the end of the day you know, all solutions which we are developing ultimately serve the community. I have a question here, Joyeeta. Could you please elaborate on the role of communities in biomedical research?

That’s a great question. And thank you so much for asking that, you know, we often don’t realize the critical and central role that communities play in biomedical research. We talk about community engagement, but I feel we should move to a stage of recognizing it as community partnership, and that partnership is critical here. What partnership denotes is, you have equal stakeholders who bring in something to the table in the entire endeavor. You know, in every partnership every stakeholder plays a critical role in making that partnership successful. In this case, also, we should realize the role that researchers play and also simultaneously realize the role that communities play.

If you take away one partner from the partnership, then it never becomes successful. So that’s how we would like to look at the role of communities. Even if we look at it from an ethical lens, we do have a lot of global ethical guidelines, for example, Research Fairness Initiative, the good participatory practices, accountability to the affected population, as well as other guidelines from the World Health Organization and UNAIDS, which talk about having an ethical framework. So, you know, there are different rights of communities that are highlighted in these guidelines. For example, the right to know what science is, the right to have their needs heard, acknowledged, and addressed, and the right to an equitable partnership. So, we also then have to realize that there are responsibilities of the researchers to kind of address some of these rights as we are working through the process of research. Try and address some information gaps, conduct research which is relevant to the community priorities and equitably share, not just the benefits, but also the risks of research, and make it more participatory, so that we can move to a stage of co-ownership. And you know, strengthening co-leadership. So, the role of communities is kind of central here.

Well, absolutely, Joyeeta. You know, it’s very important to place community at the heart of research, and it’s crucial to do that also. What strategies can be employed to ensure that community engagement is not only meaningful and effective, but also ethical?

Community engagement or community partnership, as we are now calling it, is at the core of product development at every stage in the entire process. We need communities to play a central role. So, we should realize that community engagement is also a science like you have every other scientific discipline where you start in a very structured process, then you do a literature review to get a sense of what has already happened, what insights we already know about. Then comes a stage where we have the gaps and the needs identified. Research questions thought through, you know, interventions, then kind of developed, piloted, and then move to a stage where we generate more data and build capacity. So, every discipline, whether it is immunology, virology, or behavioral research, we go through a structured process, we should move to a stage where community engagement is also treated as a science, and it is given the form and the structure that is needed, that’s number one. The second part is early and sustained engagement, start early right from the time of conceptualization, and does not end when the study ends, but have a more sustained partnership that helps us build rapport and continue the relationship with the community, so that it’s a continued process and not a process which is addressed when it is needed. And then, thirdly, we should partner at every step. You know, as the research happens, we also get to learn a lot about the process, and it is not something that is you know, constant. So, at the process of learning, this is also seen that what started off as only informing communities, so you know talking to communities about what research is and just ending it there without the scope of any two-way dialogue that was just informing, but that’s not sufficient. We then move to a stage where it is consulting, where information is presented, and then there is scope for feedback, but is that also sufficient? Perhaps not, to a stage where we move to involving the community in the process in a stage-wise manner with options of them in getting involved in carrying out some of the actions in the process.

But then eventually, also, through a lot of these ethical guidelines that are in place, that it’s important to collaborate, and then co-lead the process with communities wherein there is a space where the product of research is then co-owned. It becomes not just my research or your research, but together, our research. That is where we should move to make the community partnership most successful, and for this we had then worked on a partnership framework, which was built on the foundational principles of equity, trust, reciprocity, and ownership. So, if you’re able to keep in mind all of these points as we are engaging with the communities, I think it becomes more meaningful and more, you know, ethical in the true sense of the term.

You know, it is often said that involvement of end user or communities should be initiated early in the research process, but, on the other hand, it is sometimes said that we don’t know enough at the moment to tell others so we should wait. So how early is early engagement? How will you refer to it?

We must say that early has to be early in the true sense of the term again. Start as early as possible, not wait till we have something in hand and then go to the communities to ask for their inputs or their feedback, because at that point, then we have not taken into account the needs and aspirations. We haven’t heard their voices enough, so we should start early. We should communicate, not just the successes, but the failures also, so that we can move together in the entire journey. So by early we mean right at the time of conceptualization. You involve them in whatever decision is made, and then hear out the pros and the cons and make a collective decision. I’ll give you an example, when we started talking about the needs and the gaps, what we realized is this is a very complex exercise but then a lot of complex things can be dealt with a very simple solution. So, if you listen to the community, listen hard and listen long enough for us to be able to understand them, that sometimes gives us a solution to a lot of things. So as a part of this exercise, we heard different communities from different parts of India, also communities from across different African nations. And what we heard was that, in spite of there being different guidelines, in spite of there being a lot of effort given to community engagement and integrating it within the process, there were certain translational gaps which existed, and it is still a need to address some of these translational gaps. Some of the gaps highlighted were, you know, simply information asymmetry. There is a lot of information with the researchers which is not often translated to the communities in as many ways as possible.

There is power asymmetry, communities still feel that they are left out from the core decision-making process, which sits with the researchers, so how can we make that more equitable? and then there is a trust imbalance. We need to be more transparent and more so on a regular basis, not wait till we have something on hand, and then communicate. So, these are certain things which came out which makes us think again that we should have early engagement, meaningful engagement, and sustained engagement to make this partnership really successful.

Yeah, it completely makes sense. We should initiate only engagement within the communities. Do you think that the world is changing, and so are our strategies? Could you share some of the innovative strategies that you have developed to make this engagement more centered around public needs and preferences?

After hearing all of these, we have been trying to think what would work the best and based on a lot of things that we heard from the ground from the grassroot communities, what we have tried is to use gamification and experiential learning as a methodology to be able to communicate some of the complex science in a very simple fashion. So, this is something that we call as GEL-Gamification and Experiential Learning as a strategy, which we have used Soumya. So, that is one of the many other things that can be done, but we feel this has a lot of potential and this has received very positive feedback from the ground. Yeah. So that’s one of the strategies.

Wow games, you have used games for this. I mean, that is so innovative and fantastic, because I remember for me, games have always been about either playing FIFA or road rash, I’ve never heard of games being developed, you know, in the context of research. It’s such a fantastic and innovative concept that you all have come up with. Kudos to you and your team for this brilliant idea and I am hoping to play these games soon.

Sure. No, thank you, Soumya. It has been a journey, and it has taken a lot of efforts from a lot of team members who have contributed different points to be able to give this shape and form that it is in, and we would be happy to kind of showcase some of these in the context of research. But I would just like to highlight why games came into mind and how these are applicable in the context of biomedical research. You know what, games do is, they can enhance the understanding of study rationale, and the need for continued research, because what they do is they leverage on indigenous knowledge. They leverage on what you already know to learn what you don’t know. They are culturally rooted, and they are relatable, because in games we use metaphors that you are familiar with — examples, stories, characters from the local folklore that you have already been hearing from your childhood and it makes participant ask questions in a very active form rather than just sitting back and listening to information which is very scientific. Games are also a very, very big motivational engine. They provide hope, inspiration, meaning, a shared purpose. When you play a game, you are very competitive. You have a collective reflection on what the game is about, how you can reach the end, so it just gives a sort of sense of achievement rather than everything becoming very medicalized. You know, how many injections do we need to take, how painful they will be and at what interval do we have to take them from something which tells you the reason for those in the form of a game.

Thirdly, games take you to a space where you can have transparency and trust-building exercise because it brings you closer to a shared purpose. It gives you a language to ask your questions. You can use metaphors to ask complex questions and still be a part of the process. So, from a from a very transactional space, you become, you start feeling a part of the process, you start owning it. So that’s what games do. Also, I would like to highlight that there were certain parallels which games help us understand and realize, for example, collaborative quest. You know, I think an example, again, of the HIV vaccine story. We have numerous efforts that need to be put in, and iteratively. It’s a quest. You don’t see success in a day, you move to a stage further, and then you hit a roadblock. You again, come back, work on it, and then have another stage worked upon. So, the game is the same. You play a level, either you win or you lose, and then you have to try again. It is also something which gives you relentless optimism and infectious positivity. The fact that we can all do it together but at every step we learn something new, and then build on that, and then finally, eyes on purpose. When you play a game, you want to win at the end of it, no matter how many times you have to try, you don’t focus on the challenges or the setbacks but the more important focus is on the end goal. Similarly, in research, you ultimately, you need to move to a space where you have a vaccine where you have a better health care perspective. So that’s the end goal and it helps you move towards that. Based on these principles, we have developed different toolkits. And each of these toolkits focuses on different scientific concepts. There is one toolkit which focuses on knowing how diverse the HIV virus is, and why it is important for us to understand the way the human body functions and addresses these infections naturally. There is a toolkit which talks about drug resistance and the importance of regular testing and drug adherence. We also have a toolkit which talks about broadly neutralizing antibodies. How they function and why they are important.

Recently, we’ve developed a toolkit which focuses specifically on germline targeting as an approach for vaccine design and why we need very invasive sampling technique like large blood draw, leukapheresis and fine blood needle aspiration, not focusing on what these are, but particularly focusing on why they are needed. What is the science that they are trying to address? We also talk about mRNA and the whole protein, through games and games are built in such a way that they explain these in a very playful manner but keeping the science very accurate.

There is another set of tools which focus on adolescent girls and young women, and how they can make about their decision-making, what kind of influences they have when they are deciding on a certain decision and how can we help them understand the pathway that they are taking and how can we make that easy for them or understandable for them. And lastly, we also have tools which talk about, say-do gaps, sometimes people say about certain things, but they do not end up finally doing it. How can we understand them and address them and finally, build on interventions to be able to bring them to logical conclusions. So, these are some of the toolkits that we have gamified and taken to ground.

That’s pretty impressive, Joyeeta. I have a question, in this digital age, are there any digital games being developed and played within communities as a part of your strategies?

Oh, yes, so what I did not mention is all of these toolkits that we have developed, we have them in the physical form as well as in the digital form. So, the reason is, there are different segments of population that we work with, some of them are very tech savvy, some of them prefer the traditional physical methods. So, the games focus on concepts which are same but there are physical games which have to be, you know, played with props and things which are procured locally. But then we also have parallel digital games. The games are very different, but the concepts are the same. They are digital games which have to be played on digital platforms, and you have levels which are facilitated. We, of course, don’t expect the community to play games on their own, so all of these are facilitated games. We will have a facilitator who will have the tabs, and they will be facilitating the participants through each level. What is important is after each game there is a conversation which happens, and that conversation is very important, because that is where we bring about a lot of meaning, making a lot of understanding of the games, their correlation with the science and the messaging.

So that’s how every toolkit kind of goes. We have to have a very, very rigorous training process of the facilitators to actually implement these games on the ground. And so far we have had quite a bit of success in developing in, you know, kind of taking these on the ground to different communities.

Wonderful, so, since you have been actively engaging with communities with these games, have you received any feedback from the ground? I’m curious to know how they like the experience and is there any noteworthy inside or engagement pattern you would like to share with us?

Yes, so we have taken these games to the ground and played with different communities. And like I mentioned, they have been, very, very responsive to these games. I’ll take a specific example, we have developed physical games and the digital games, which talk about the diversity and the latency of HIV virus, the importance of ART (Antiretroviral therapy) and drug resistance. So, when we took these games to the ground and actually rolled out a study to collect data, we saw that when we do a baseline and an endline there has been an overall increase of 22% in the correct response which is quite significant. And please remember, these are communities who are very literate in terms of the basic concepts of HIV and programmatic messages, which are taken to them regularly. Even in that community we have seen an overall increase in correct response, 22%, and there has been a significant reduction in the hesitancy to participate. Earlier they have been very hesitant to participate in biomedical research, not understanding what it is meant for. But after these games we have seen a significant reduction of about 50% in their hesitancy to participate in research, which means there was an increased willingness to participate. This is one of the studies where we have data already coming in, and it perhaps will be available in public domain soon, but there are other instances also where we have heard very positive response qualitatively from the ground. We have taken some of these tools and demonstrated them in the African context, in Kenya and in Uganda, present them to the CAB’s (Community Advisory Board) and you know they have also given us very positive response in terms of the games — very useful to break the scientific jargon into layman’s language. They are going to be very, very effective. If we take them to adolescent population and to younger adults, also useful for more of the adult population. But this is something that they were willing to take up and adapt in their own context, and then, you know, sort of use them for different purposes by tweaking the messaging, adapting the language etc. So yeah, we’ve had a sort of indication that games are accepted as a mechanism to convey important messages, and we hope to build on this, to expand the scope and the messaging to other needed themes as well.

Do you believe these games and strategies could be applicable to other diseases as well?

Absolutely, this is just the mehodology or strategy, and the like. I mentioned, the principles remain the same. So, if we can use the games, we spoke about using them in the context of HIV. But we can very well use them in the context of other diseases like TB, like, you know, AMR (Antimicrobial Resistance) or any other emerging infection that may be coming up, identify a theme that is most needed and we can develop games based on those themes and convey a particular message. Also, gamification and experiential learning is just one of the modalities. We could also have other human-centered design methodologies to be able to address some of the needs. So as long as we are able to make this people-centric and keep being responsive to the needs of the ground, we should keep thinking and keep challenging ourselves.

You know, Joyeeta, I’m deeply impressed by your approach. You’re not only taking care of communities, you know, but also employing innovative technologies to simplify interaction and impart scientific knowledge, which is very important at this time, and in this era — kudos to you. I know I have asked a lot of questions, but just one more thing in your opinion, what are the key takeaway messages and what should people take away from this interaction of ours?

You know, Soumya, I think we’ve spoken a lot and covered a lot of different points here. But just to summarize some of the key things, and these are very simple things which we sometimes don’t tend to gather and ponder over. The first thing is the only thing that we can think of as constant is perhaps- change. What we mean is things will keep changing. Science is changing, our aspirations are changing, priorities change, solutions will change, so we should be ready to embrace, change, and evolve with it, evolve further better. The more we try to, you know, not hear or cure today and not evolve, the more difficult it will be to find effective solutions, so keep evolving with the process.

Second is to make community engagement, community partnership like we spoke earlier, let them be equal owners and contributors in this endeavor. Third, and very importantly, recognize the science behind this partnership, and we should allocate resources, raise funds, and invest in this process, what it needs is time, money, and human effort to make this a success. So, we should make sure that we have all of those allocated when we are conceptualizing a study, an exercise or trial, whatever, and start early. Do not have this as a checklist but make this an integral part of the entire study.

Again, we tend to have very simple solutions to complex problems, so recognize that and just listen and respond. Sometimes it will give us solutions very easily, and in a very short period of time if we give it the due attention and the due resources that can be given. And lastly, you know, science has huge power, but so does the lived realities of people. We should not underestimate the power of the lived experiences of people, because sometimes the learnings therein are way more powerful, and bring in very, very critical insights which are phenomenally significant. So, let’s join hands in progress to a better future. Keeping in mind this partnership that we need to develop. Thank you.

Thank you so much, Dr. Joyeeta, for sharing your insights and sharing light on the exciting future ahead.

So here you have seen a glimpse of ethical research, and how fairness and integrity can guide us to a successful outcome. We have learned the importance of adapting to the digital age and embracing innovative learning methods for our growth. As we wrap up this episode of Meet the Scientist, let’s remember that the search is not just a procedure. It’s a journey of discovery meant to be shared by everyone. Most importantly, it involves communities, at its goals. Until next time, keep exploring, keep engaging, and keep pushing the boundaries of what’s possible. Thank you.