Creating health equity through community-based participatory research: Q&A with Purnima Madhivanan

November/December 2023 | Volume 22 Number 6

A woman dressed in a purple sari returns her self-collection vaginal swab to a clinic worker, dressed in medical whites, for HPV testing

Photo courtesy of Public Health Research Institute of IndiaA woman returns self-collection vaginal swab for HPV testing to a clinic run by Public Health Research Institute of India (PHRII). Dr. Purnima Madhivanan established PHRII in 2005

Dr. Purnima Madhivanan, associate professor at the Mel & Enid College of Public Health at University of Arizona, trained as a physician at Government Medical College in Mysore, India. Afterwards, she earned an MPH and a PhD in epidemiology from the University of California, Berkeley. While writing her dissertation, she established the Public Health Research Institute of India (PHRII); PHRII’s Mysore-based reproductive health clinic has delivered services to more than 24,000 low-income women living in the district since 2005. The clinic (with its molecular laboratory) offers integrated prenatal care and HIV testing services for women and provides the only community-based cervical cancer screening program in India that uses self-collection of samples for human papillomavirus DNA testing.In addition, Madhivanan serves as an advisor to various state public health departments, non-profits, and government research organizations. She is principal investigator on the Global Health Equity Scholars Training Program, a collaboration of Yale, Stanford, University of Arizona, and University of California, Berkeley. Her research includes working with Hispanic populations in Arizona. She received the International Leadership Award from the Elizabeth Glaser Pediatric AIDS Foundation in 2007 and the Maria Teresa Velez Outstanding Mentoring Award from the University of Arizona in 2021.

What is community-based participatory research (CBPR)?

The most important feature of CBPR is its fundamental focus on creating health equity in communities that may be affected by social, structural and environmental racism. There is a tendency for people to define CBPR as just another research method to be used in every situation, but I disagree. In my way of interpreting CBPR, it is a community-building approach, a methodology that recognizes community as a unit with its own identity, strengths and resources already in place. CBPR is asset-focused. It begins with an idea that is positive, instead of “Oh, this community does not have this, so let's bring that to them.” It identifies a community’s strengths and then builds on those strengths.

CBPR also promotes co-learning among all partners while emphasizing the relevance of community-defined problems. Suffice it to say that it’s a long-term investment in developing leadership and self-efficacy at the community level. This is in stark contrast to other methods where researchers fly in to do short-term training, learn a little about the community, extract data, and leave. CBPR researchers ask the community to define the problem, work with the community to come up with possible solutions, and then help build capacity to implement those solutions.

What is PhotoVoice and why do you use it?

Participants take photographs to express an insight or experiences that otherwise might be difficult or uncomfortable to share. Then, they explain why they took an image, how it’s meaningful or important to them relative to an issue under discussion. We have a very specific technique called “SHOWeD,” where we go through each photo and ask, “What’s in this picture? Explain what you mean. What are we going to learn from this?” So there’s a whole process by which researchers are invited to understand the issue more deeply from the participants’ perspective to gain lived insight into the structural inequities underlying community problems.

PhotoVoice puts the participant’s voice, lived experiences, and perspectives first. In essence, community members become researchers who share their wisdom and experiences. During group discussions, researchers also witness how a participant’s experiences either resonate with or are distinct from those of others in the group. Often, assumptions that have been taken for granted can be explored and, sometimes, challenged.

I introduced one of my postdocs to PhotoVoice, suggesting she consider using the method to examine the barriers and facilitators for cervical cancer screening. Based on that, we introduced self-collection of vaginal swabs for cervical cancer screening, and we’ve been doing self-collection for almost 12 years now at my site in India. I've begun using those lessons to see if we can bring self-collection into the screening program here in Arizona. Exchange and learning can happen in both directions.

You see the individuality of communities, do you also see commonalities?

There are many commonalities! For instance, there are people here in Arizona who are exposed to high rates of pesticides in their drinking water. All the mining here means we have a lot of toxic metals in our soil and in our environment. They also have a higher risk of developing Alzheimer's, Parkinson's, and multiple sclerosis. This community is distinct, yet it shares some basic characteristics with other communities with similar problems, like poverty, low levels of health literacy, discrimination, systemic racism, and a lack of medical care.

Such commonalities are important but each time we approach a new community, we must prioritize the things that are important to that community. They might share similar issues as others, but how they prioritize them might be different. So even if you think you know what should be done and the order of steps to be taken, it's more about empowering an individual community to voice and solve its own problems.

In this photo, PHRII trainees some wearing saris, learn the loop electrosurgical excision procedure for removing abnormal cervical cells from an experienced professional

Photo courtesy of Public Health Research Institute of IndiaPHRII trainees learn loop electrosurgical excision procedure for removing abnormal cervical cells

You work at the intersection of infectious and chronic diseases: please explain.

Cervical cancer is the fourth most common cancer among women globally with about 600,000 new cases and about 300,000 deaths each year. In India alone, we have about 100,000 new cervical cancer cases and 72,000 deaths annually. It is a persistent infection with a virus called human papillomavirus (HPV)—the high-risk HPV strain—that leads to cancer. HPV is an infection, cervical cancer is a chronic disease, so the intersection between the two is significant. We’re seeing more and more examples of viruses causing cancer, including Epstein-Barr, hepatitis B, hepatitis C, and human herpes virus 8 (also known as Kaposi’s sarcoma herpesvirus).

A lot of my work has been about identifying infection so that we can prevent cancer by vaccinations (primary prevention) or screening (secondary prevention). Now that we have a vaccine for hepatitis B, let’s make sure everybody’s vaccinated; there’s a vaccine for HPV, let's get that into every 9-year-old—that's my focus.

And, while we’re discussing viruses, I’d like to mention antimicrobial resistance and the big challenge it presents. Mostly, we talk about antibiotic drug stewardship and how to get new antibiotics, but, unfortunately, pharma may not provide any. Maybe it’s time to look at an alternative, such as phages, which are viruses that can infect and destroy bacteria, essentially working as antibiotics. We need to do more research on phages. Solutions often come when we think outside the box or when we bring a more holistic approach to problem-solving.

How has implementation science influenced you?

The field of implementation research understands that use of research knowledge, not just production of knowledge, is a primary concern and so implementation scientists ask a unique set of questions: Are we working with the communities to formally define an implementation process? Who is the primary audience? How do we plan to reach them? Over time, practices in the field have become more formalized with researchers using evidence-based interventions to change health behaviors across communities.

In many ways, I've been doing implementation science all along. Working with my team I take ideas from a variety of public health settings and then we try to translate interventions from one setting to another to solve problems. Now, though, I plan to formalize implementation research methodology in my work and I’m going to be more intentional about these methods as I move forward with my research. While this is the next stage of my work, what I'm really talking about is my conviction that we should continue learning about how to work with communities.