In one of his jobs as a health care navigator, Peter Musimami frequently heard about the struggles people faced when it came to getting good quality health care. His job was to help people enroll in MNsure, but often found that people’s needs were much more than just enrolling in a plan.
“A lot of the people who approached me were immigrants or folks that just had limited English speaking capabilities. We started to talk not just about them signing up for health insurance, but a lot around, ‘What are the opportunities for accessing better health care for me and my family?,’” he said.
The concerns people had were constantly in the back of his mind, but after having a personal experience that affected his family, Musimami knew it was time he do something about it.
In 2019, his wife was pregnant with their third child. Both he and his wife are from Uganda, with his wife having immigrated around 10 years ago. When she faced some difficulties during her pregnancy, the language barriers and lack of connection with her provider, became a real issue.
“There’s always been a challenge as you talk to health care professionals regardless (of if you) might know English. Depending on your accent, at times the communication becomes really strained if you don’t hit it off with a provider. My wife really had a challenge communicating with the nurse practitioner or midwife that was assigned as support,” Musimami said. “It was just difficult communicating.”
Challenges in communicating
At around 23 weeks in the pregnancy, his wife started to lose a significant amount of fluid – so she called the nurse line.
“They evaluated over the phone (and) said ‘I think you should be fine.’ At 27 weeks, she visited with that nurse practitioner, and voiced her concerns that the baby wasn’t active. She didn’t feel the baby was active. The nurse practitioner kind of evaluated and said ‘You should be OK.’” Musimami said.
He remembers leaving the nurse practitioner a voicemail, reiterating concern over their child. At his wife’s next visit, the nurse practitioner told his wife, “Tell your husband, he shouldn’t worry about it.”
[image_credit]Ava Kian[/image_credit][image_caption]Peter Musimami, the creator of the app Gumbo, poses for a portrait on November 20, 2023, in St. Paul. [/image_caption]
The family later learned that the doctor did not know the concerns that had been voiced during his wife’s previous visit with the nurse practitioner.
“Up until the child was born, he (the doctor) didn’t know some of these details that have gone on during the pregnancy,” Musimami said. “There was something that slipped through the cracks in terms of communication.”
Musimami felt that because of his wife’s accent and discomfort with English at times, her concerns were dismissed.
“From our experience, if you have an accent and you’re kind of asking too much, there’s often opportunities for just being dismissed altogether,” he said. “I think it was a mixture of miscommunication and just the lack of allowing for the patient to have agency in what was going on with them and allowing their opinion to be validated.”
After Musimami’s wife gave birth to their son, they spent five months in the NICU. Their son relies on a feeding tube to eat and his wife has stopped working to take care of him.
“That for me was the point where I said there has to be a way where we can help people. People (who) have limited English speaking skills, the literature shows that they’re 20% less likely to engage in the health care system just because of the discomfort they have as they engage with health care professionals,” he said.
For some situations, the presence of an interpreter can help. But it comes with its own set of challenges, like if the patient isn’t comfortable talking about certain issues in front of someone else.
Before the pandemic Musimami approached a clinic in Minneapolis that had a large Hispanic and Somali population about how to solve the language disconnect, but with COVID his project went on pause.
In 2022, an opportunity came up for him to develop an app to increase awareness around vaccinations. So he created modules on information on vaccinations, encouraging people to receive theirs.
The app, called Gumbo, has evolved to offer information on different health topics, like nutrition for pregnant mothers and information on diabetes and disease states. The content is voiced by local doctors and nutritionists, who are a part of the communities for whom they are voicing. That feature allows patients to get information in a more private setting, compared to an interpreter, while still being from someone trusted in the community.
“For example, something like sex education, if someone needs a better understanding and needs an interpreter, there might be topics that they just won’t engage in,” the app designer said. “So this allows for them to get that information kind of in a private setting, understand what the implications are to them, to their family.”
The app was piloted in Axis Medical Center in Minneapolis using Spanish, Somali, Oromo, Amharic, Swahili and English. It’s not a live translation, but rather gives information that a doctor might send home with a patient in a flyer.
“I think so far it seems to be helpful in terms of breaking the barrier in education,” said Dr. Crispin Semakula, the chief medical officer at Axis Medical Center.
Semakula said the clinic sees many patients who are immigrants from Somalia, Ethiopia and other East African countries. Aside from helping roll out the app at the medical center, he also voiced an introduction in Swahili for users of the app.
During Ramadan, the app had audio modules around staying healthy while fasting, giving guidance that if someone has diabetes they can eat, coming from a community member.
“The big part is trust. Who’s communicating with you?” Musimami said. “If the audio is coming from someone that’s trusted … it’s easier for you to start to say ‘OK, there’s a responsibility they have to make sure the message they’re putting across is the truth.’”
During the pilot, the app had around 450 active users. Musimami received feedback from those patients and providers on how it could be improved, like allowing patients to fill out surveys after listening – and doctors to have access to those results. Some patients wanted more information on other health topics.
These additions would require more funding and resources going towards the app. Right now, Musimami is working on the app on the side of his full-time job and is trying to find another person to help expand it. But he’s run into some challenges.
“It’s challenging to develop technology for underrepresented groups because it’s not seen as a commercially viable option,” he said. “There’s currently initiatives around trying to either bring more language components care to individuals or providing interpreters, so that’s a cost to the system. But in the startup space that I’m trying to engage in, it’s still kind of a concept that people say ‘It’s nice, but not many people are willing to say, ‘OK, I’m going to come behind that.’”
Giving patients agency
Musimami felt that even with him having been a health care navigator, there were still barriers to accessing good health care that led to his wife’s emergency C-section and the difficulties that followed.
He wonders how much of someone’s health outcomes comes down to luck of the draw with providers.
“As we talk to people within our communities, it’s kind of like you sometimes get lucky and get a good provider and sometimes you don’t. It’s always about the luck with the communication. And I don’t think it should be the case that you should just be lucky,” he said.
He wants this app to reduce the “luck” variable and give patient’s more of a voice.
“She (his wife) just didn’t want to push back on the communication she was receiving from the health care provider. And I feel like she didn’t have enough of a voice,” Musimami said.
