May 1 - Public holiday spent innovating for an affordable, culturally sensitive, and and accessible breast prosthesis with UWOCASO and Makerere BME

Today was Labor Day in Uganda - a public holiday - so we were not able to conduct our study at the hospital. Instead, Kim Hwang, Dan, and I headed to Mulago Guest House for an event held by the Uganda Women's Cancer Support Organization (UWOCASO). UWOCASO is an NGO that gives psychosocial and pathway navigation support to breast cancer patients and survivors

For some background, Kim Hwang and I met Madam Gertrude, breast cancer survivor, founder, and CEO of UWOCASO, in January of 2023. See this blog post, Pink Sneakers and Ultrasound Sweeps, for details on our meeting over a year ago. We met again in August of 2023, along with the new team of graduate students from Johns Hopkins that we were mentoring. You can read about that visit here. Both times that we met with Madam Gertrude, we came with a certain agenda of learning and validating a specific idea we had. Each time, Madam Gertrude brought out of her cabinet a few different types of breast prostheses - from high-end silicone implants to economical knitted versions. She showed us these prostheses, and told us about a need that had been present in the breast cancer survivor network since it's inception: how can we offer affordable breast prostheses that women who have undergone mastectomy can wear with confidence? Each of the two times that Madam Gertrude told us about this need, we did listen intently, but because we were exploring a different lead that was in line with our particular agenda about diagnosis, this prosthesis need had not matured to leave her office and our notebooks each time we heard it. Until now. The day's events would not have been possible without the collaboration and ideation from Makerere's Biomedical Engineering Department.

During one of our visits to Uganda, we had the pleasure of meeting Julius Mugaga, the inventive and energetic leader of Makerere University's Design Cube. The Design Cube is an innovation space created by Julius made from repurposed shipping containers for students and researchers to design and manufacture technology to serve the most challenging healthcare needs in the country. We spoke with Julius about the breast prosthesis need and he was excited to kick it off as an innovation project with his researchers and students.

Over the last year, a core team made up of the three organizations: UWOCASO (Madam Gertrude and Caroline Akello), Makerere BME (Julius Mugaga and Paula Kworekwa), and JHU (Kim Hwang and I) put our heads together during biweekly Zoom calls to chart a path forward. We applied to funding calls together, conducted Zoom brainstorming sessions, and commiserated about the need for a culturally appropriate, affordable, and accessible breast prosthesis. We realized that we needed to solicit input from more women in UWOCASO who had this need in their lived experiences. When the timing aligned for Kim Hwang and I to be in country for our usability study, UWOCASO and Paula rallied their network of breast cancer survivors, clinical experts, and engineers to meet for a seminar about designing a better breast prosthesis.

The meeting was held over breakfast at Mulago Guest House and started with an opportunity for breast cancer survivors to share their stories about losing their breast(s) to mastectomy. Dr. Noleb Mugisha, Dr. Edward Kakungulu, and Dr. Rebecca Kiziri Mayengo shared their expert perspectives as oncologists, breast surgeons, and clinical psychologists respectively. Kim Hwang, Dan, Paula, and I rounded out the meeting with an engineering perspective and conducted a group brainstorming session to generate user specifications of an intervention in this space.

The meeting was an amazing way to assemble experts in their own spheres to listen and work together on a shared goal. The fruits of this meeting were felt real time - from the enthusiasm of all the attendees - and more is yet to come as this project progresses. I look forward to staying engaged with this group as we design for breast cancer survivors.

After the event, Kim Hwang headed to Mbarara to get our second leg of the usability study set up at Mbarara Regional Referral Hospital. Dan and I stayed in Kampala to finish our planned work at Mulago Hospital after which we would join Kim Hwang in Mbarara.

In the remaining hours of the day, I had a chance to catch up with Dr. Raymond Kihumuro, a doctor and friend who I had met at the Consortium of Universities for Global Health (CUGH) conference in Los Angeles earlier this year. With that, labor day in Uganda was a wrap!