Despite the expanding availability of treatment and media messaging via television and radio, there has been little improvement in the percentage of women presenting with late-stage disease in Haiti. To date, only 25% of women in Haiti have ever performed a self-breast exam and less than half of women believe that breast cancer is curable. 79% of women find the Innovating Health International cancer program once the breast cancer is at advanced stages, 28% of whom have metastatic breast cancer (MBC). To address this issue, Innovating Health International (IHI) initiated a project to identify why awareness campaigns in the country failed to reduce late detection rates.
In 2015, the Innovating Health International cancer team, then a part of the organisation Project Medishare, was awarded a SPARC MBC Challenge grant to identify and build a collaborative network of organisational, community and healthcare actors to co-design awareness and engagement activities to reach MBC patients in Haiti. IHI is a non-profit organisation that strives to create new and hybrid models of healthcare and engagement that do not seek to simply ‘build capacity’ but respond to local needs through constant iteration and consultation.
“The SPARC program helped to put the IHI cancer program on the map in Haiti. The treatment program has doubled in size since the implementation of the SPARC grant. We’ve also become quite close with UICC and their member organizations as a result, which has led to many ideas and even grant funding.”
The principal goal of this project was to research and implement a public awareness and engagement campaign focused on the issue of MBC by effectively addressing misunderstandings and barriers to treatment in the local population.
A community-engaged study was conducted reaching 400 people from around the country in order to better understand Haitians’ perceptions on this diagnosis, complications, treatment, community support, and access to medical services for breast and cervical cancer. One in five respondents know how a woman develops breast cancer; only 30% are aware of the complications and 20% know where they could be tested.
Based on these results, and on the observation that previous awareness campaigns in Haiti failed to improve early detection rates of breast cancer, IHI have implemented an engagement strategy based on patient-focused design to encourage community-based organisations and medical services to increase their community outreach activities.
Workshops including patients and other community-based organisations were held to design relevant information materials such as a multi-media tool kit that included booklets, short videos, and a Haitian Creole website.
IHI has since distributed 60,000 of the awareness booklets, put 10 videos on the Creole website, and educated 35,000 people from around Haiti. As they described it, “We were able to reach out and work with many different partners on the project, helping them to understand the issues and exposing tens of thousands of Haitian women to breast cancer education.”
Overall, more than 900 women with breast cancer, and 2,000 patients total have been treated since the programme’s inception in June 2013. It has since been expanded to screen women working in large factories. In that context, the booklets have been used to educate 7,000 women and screen 5,100 women for breast cancer.
IHI is currently implementing a program to screen and treat early cervical cancer, located at the 10 regional hospitals of Haiti. Through this program, they have screened over 5,000 women in 2017 and close to 10,000 women in 2018.
More importantly, following the awareness campaigns and dissemination of the information materials in local language, the number of women presenting with Stage IV cancer dropped from 39%, in 2014, prior to the project, to 22% in 2018.
Journal article: Tillyard, G, Surena, G, Cornely, JR, Mondestin, MJ, Senatus, D, DeGennaro, V. A mixed methods, community‐based investigation on women's cancer awareness in Haiti. Health Soc Care Community. 2019; 27: 1458– 1468. https://doi.org/10.1111/hsc.12817
Journal article: Tillyard G, DeGennaro V Jr. New Methodologies for Global Health Research: Improving the Knowledge, Attitude, and Practice Survey Model Through Participatory Research in Haiti. Qual Health Res. Volume 29, Issue 9. https://www.ncbi.nlm.nih.gov/pubmed/30565510
(Information from the project description and context is compiled from the SPARC reports)