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Advancing our Understanding of Breast Cancer Stigma in Africa

Five Questions with Temidayo Fadelu on his transcontinental clinical research.

Temidayo Fadelu holding his medal after finishing a marathon.

As a young investigator interested in how stigma stifles breast cancer treatment in sub-Saharan Africa, Temidayo Fadelu, MD, an instructor in medicine at the Dana-Farber Cancer Institute (DFCI), was looking for ways to expand his research skills when he stumbled upon the Harvard Catalyst curriculum and was hooked.

His MPH training at Harvard T.H. Chan School of Public Health had focused on quantitative data collection, but his chosen research track required the kind of qualitative insights gleaned through carefully crafted in-depth interviews. Searching online, all roads led him to our clinical and translational research training programs – specifically the mixed methods course.

Now he’s a self-proclaimed “heavy user” of the curriculum, culminating in his current enrollment in the two-year KL2/Catalyst Medical Research Investigator Training (KL2/CMeRIT) program, where he’s taking his research on context-specific interventions to address stigma to the next level.

We caught up with him by Zoom just before he left for an extended trip to Rwanda to continue his on-site research.

You are a former Postgraduate Education Ambassador for Harvard Catalyst. What does that mean?

I guess I’ve been one of the heavy users of [Harvard] Catalyst courses (laughs). Ambassadors essentially help spread the word, through social media and our networks, about the programs and courses that are going on.

I got introduced to Catalyst while I was doing my master’s in public health. I recognized that there were a limited number of things I could do within that degree, but lots more I wanted to learn, so I was looking for opportunities. It started with taking a mixed methods research course, because I wanted to learn more about qualitative methods. Much of my MPH training was focused on quantitative analysis. But in the type of work that I do, it’s also important to have experience with qualitative data.  I’ve subsequently done an implementation science course, a science communications course, and I’m currently a KL2/CMeRIT program scholar.

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What’s the focus of your current KL2/CMeRIT scholarship and how does it fit into your broader research?

Most of my work is breast cancer-related. The KL2 project is specifically about understanding breast cancer stigma in Rwanda, using a mixed-methods approach. We arrived at this project because I had done an earlier mixed-methods study to understand, from a patient’s perspective, what were the things associated with their inability to complete breast cancer treatment. Many things came up in the patient interviews that were ideas and concepts around stigma. Patients felt like they were abandoned by their family members. Patients felt like the community wasn’t accepting them. They couldn’t discuss their disease where they worked. They were afraid of other people knowing. People thought they were going to die.

“My overarching goal and idea is improving the delivery of breast cancer care in low-resource settings such as Rwanda and Haiti, where I’ve been working.”

Digging a little bit deeper into the literature to see what was out there, I recognized that there really weren’t any good studies that have measured cancer stigma in sub-Saharan African. We know it exists, but it hasn’t necessarily been quantified. That makes it hard to assess whether interventions are helpful or not.

The KL2 project is really about quantifying the many different elements of stigma from the patient’s perspective as well as from the family member’s perspective. The hope  is if we get a better sense of the prevalence and the type of stigma, we can use that information to develop contextual interventions to pilot in Rwanda. The results will also help us in a future external grant application, which would support the development of the intervention and expand the understanding of stigma beyond patients and their caregivers to include healthcare workers as well.

What’s the ultimate goal of this research track?

My overarching goal and idea is improving the delivery of breast cancer care in low-resource settings such as Rwanda and Haiti, where I’ve been working. The KL2 portion is developing the measurement instruments and quantifying breast cancer stigma in patients and their caregivers.

We’re hoping to either develop new interventions or adapt existing ones to use in this [sub-Saharan Africa] context. The heart of the work is really the process of coming up with this intervention, which would use community-participatory research principles, working with patients, patient advocates, and clinicians who are local to the region to evaluate what is out there and gather ideas for what might work in this context. Hopefully, we can have some sort of package of interventions – because I don’t think it’s just going to be one thing – that can then be piloted to see how patients and family members engage with those ideas. We’ll then evaluate the results to see how efficacious the interventions are.

What’s the value of this support to an investigator such as yourself?

Pretty incredible, I have to say. In this type of work, there are not many funding options. When you’re in this transitionary period, much of what you need is protected time to be able to focus and do the research. The KL2 has been especially supportive in this way; without it I wouldn’t have had protected time this year.

“When you’re in this transitionary period, much of what you need is protected time to be able to focus and do the research. The KL2 has been especially supportive in this way; without it I wouldn’t have had protected time this year.”

The process of applying for the KL2 also was helpful in synthesizing my ideas and putting them on paper. That’s not necessarily unique to the KL2, but for me, that process is always helpful. Also, the Grant Review and Support Program (GRASP), which is part of the KL2 curriculum, has been very thoughtfully created to support investigators in the grant writing process. This resource helps them formulate better grants by guiding them through organizing the grant process and planning ahead. All of those elements have benefited me in many ways.

I think sometimes as a young investigator there might be resources that other people don’t know about, especially training resources and grant writing resources, all of which are typically expensive. But as a member of the Harvard community, we have access to pretty incredible resources for free. I recommend investigators become familiar with them and use them in ways that might help them – there’s no reason not to!

What’s something most people may not know about you?

I enjoy traveling, and I also run marathons. I usually train for one marathon a year. I have done eight around the world, and this year, I’m doing my ninth (Tokyo) and tenth (Boston) – my first Boston Marathon. Sometimes it’s nice to combine a trip with a race and explore the city by foot.

I started running when I was in residency as a stress reliever, because my intern year was quite intense. It was a helpful way for me to clear my mind at the end of the day. Over time, I worked up to longer runs. It can be a very monotonous and meditative activity. You’re putting one foot in front of the other. But then you’re also able to just let your mind wander and allow your brain to be creative. I don’t know how to describe it, but there is an energy from the running that actually helps me think. I got the entire idea for one of my grants during one of my races.

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