Co-Designing Pay-It-Forward Strategies to Improve Retention in Cervical Cancer Care in Kenya: A Formative Participatory Study

In many parts of the world, a cancer diagnosis is not just a medical crisis; it is a financial one. For women in Kenya, the journey to treat cervical cancer often requires traveling long distances, missing days of work, and paying for medicines that cost far more than a typical annual income. Even when the medical care itself is available, these hidden costs and the sheer exhaustion of navigating a complex health system can cause patients to stop treatment before they are cured. This gap between diagnosis and survival is a major global challenge. Researchers have long looked for ways to keep patients engaged in their care, often focusing on removing financial barriers directly. However, a different approach is gaining attention: the idea of "paying it forward." This concept relies on a simple, powerful human instinct. When someone receives a gift or help, they often feel a natural desire to help someone else in return. In Kenya, this spirit is deeply rooted in a cultural tradition called Harambee, which means "pulling together," where communities pool resources to support members in need. The question researchers asked was whether this ancient sense of mutual aid could be harnessed to solve a modern medical problem: keeping women with cervical cancer in treatment until they are well.

To find an answer, a team of researchers from Kenya and the United States gathered a group of twenty-five people for a two-day workshop in Kisumu. The group included women currently undergoing treatment for cervical cancer, survivors of the disease, doctors, nurses, and community leaders. Instead of simply asking these participants what they thought was wrong, the researchers used a method called human-centered design. This approach treats the people who will use a solution as the experts in creating it. The workshop began by mapping out the entire journey of a patient, from the moment they prepare to leave home for the clinic to the moment they leave after a visit. As the women shared their stories, a clear picture emerged of where the journey broke down. They described the fear of the unknown, the pain of side effects, and the frustration of long waits. But the most persistent barrier was money. One woman explained that while she wanted to get better, family emergencies or the simple cost of a bus ticket could force her to stop coming. Another described the humiliation of waiting in line for hours only to be told her file was lost, or the anxiety of realizing she could not afford a necessary test.

The group identified fifty-five specific moments where patients felt discouraged or stuck. These were not just random bad days; they were predictable points in the system where motivation faded. The researchers then asked the participants to imagine how a "pay-it-forward" system could fix these specific problems. The idea was that a patient might receive help today, and later, when they were able, they would contribute to a fund or offer support to help another woman in the future. The participants did not just accept the idea; they shaped it. They brainstormed six specific strategies that could work in their local clinics. One idea was a "peer navigation" system, where a woman who had already been through the process would guide a newly diagnosed patient through their first visit, answering questions and offering comfort. Another was a "transport voucher fund," where a patient who received free transport for a visit could later donate a small amount to help pay for someone else's trip. They also suggested a "basket of kindness" at the checkout counter, filled with small items like food or fare money that a patient could take if they were in immediate need, with the hope that they might add to the basket later.

The group was careful to distinguish between strategies that involved money and those that did not. They agreed that while financial help was crucial, it needed to be handled with extreme care. Because there have been past experiences of corruption or mismanagement in health funds, the women insisted that any money collected must be overseen by a trusted group outside the hospital, such as a church or a patient-led self-help group. They also emphasized that not everyone could give money. For those who could not afford to donate cash, the group proposed non-monetary ways to participate, such as writing encouraging notes on a message board in the waiting room or simply offering a kind word to a stranger. This flexibility was key. The participants noted that the spirit of generosity existed even among those with very little, but the system needed to be designed so that giving did not become another burden. They realized that the end of one clinic visit was actually the beginning of the decision to return for the next one. If a patient left feeling supported and valued, they were more likely to come back.

The result of this workshop was not a finished program, but a set of six co-designed strategies ready to be tested. These included peer navigation, a transport fund, a health insurance support fund, a message board for encouragement, an "integrated service gift" where a patient could receive a free test for another condition with the option to donate later, and the basket of kindness. The researchers noted that three of these ideas—peer navigation, transport vouchers, and insurance support—had been used successfully in Kenya for other health issues, such as HIV care, but usually with outside funding that eventually ran out. The new twist was the pay-it-forward element, which aimed to make the support self-sustaining through the community itself. The study suggests that this approach could work by activating "social capital," a term that describes the trust and connections between people. When a patient receives help and then helps another, they are not just exchanging money; they are building a sense of belonging and shared responsibility. This feeling of being part of a community that cares for one another might be just as important as the medical treatment itself.

The researchers are careful to state that this study did not prove that these strategies will work to keep patients alive or cure the disease. It was a formative study, meaning it was designed to explore ideas and create prototypes before they are tried out in the real world. The team found that the women were willing to participate and that the ideas resonated with their lived experiences, but they do not yet know if the system will be sustainable over time or if patients will actually follow through on their promises to give back. What they did find, however, was a clear path forward. By listening to the women who face these challenges every day, the researchers identified specific, practical ways to use the power of community to bridge the gap between diagnosis and survival. The next step is to pilot these strategies in clinics to see if they can turn the promise of mutual aid into a reality that saves lives.