A critical part of this data collection is the Participatory Inquiry into Community Knowledge of CHAMPS or PICK-CHAMP – a component of the initiative’s formative research.
The PICK-CHAMP application is an example of how PHII builds information systems to meet specific needs while ensuring data still are consistent across the initiative. When CHAMPS initiates work at a new site, an important first step is talking to community members and leaders. We want to learn more about their perceptions of childhood death, their experiences with the health care system, their expectations for burial and other cultural ceremonies, and their openness to Minimally Invasive Tissue Sampling (MITS), which CHAMPS uses to ascertain the cause of death for specific cases. Local CHAMPS teams facilitate workshops to talk with community members about these topics and to better understand their perceptions of the project.
As part of this work, I developed an application to collect community input during these workshops. The product had various requirements, including:
- Multi-language capability
- Coded values for each option, so data entered in any language version could be integrated and standardized and analyzed with all other data collected in a centralized cloud
- The ability to operate even without an internet connection, with the ability to upload the data when internet is available
- Access for local sites to query and analyze their own data
So the PHII CHAMPS team and I went to work. The resulting PICK-CHAMP application is available in three languages (English, French and Portuguese). A registration page with drop-down menus allows us to capture demographic data about each workshop participant. During the workshop, facilitators enter data into open-ended fields on topics like participants’ perceptions of pregnancy, of childhood health and illness, and of the proposed CHAMPS activities.
The app also displays a series of proposition statements that the CHAMPS Social Behavior Health Team developed. They are things like, “It is wrong to remove small samples of tissue from a child after she has died even if tests done on that tissue could tell you how she died,” and “While this research focuses on sickness and death, it is being carried out in order to improve our health and our living.” Participants indicate whether they agree, disagree or are uncertain about each idea presented. Aggregated responses to these propositions provide a kind of “pulse check” for community perceptions of the CHAMPS project and identify possible areas of concern that the CHAMPS team must explore in more detail with community members.
While there are always ways to enhance and improve a product (especially one that was developed in just four weeks), I’m glad to report that, as of December 2016, PICK-CHAMP has been implemented in Mali and Mozambique, and it has been utilized in over 10 workshops across these two sites. The Mozambique team already is analyzing PICK-CHAMP data from the workshops, which represents an important informatics win for the initiative because our goal is for end-users to manage and use their own data.
When I think of all the different data forms and all the different languages involved in a multi-year, six-site project like CHAMPS, I see the huge role informatics plays in ensuring the data are accessible and actionable for all partners. The PHII team learned a lot from developing the PICK-CHAMPS app, and these lessons will be valuable in future efforts to build information systems to fit specific needs while ensuring data consistency, precision, integrity and interoperability across the CHAMPS enterprise.