Expanding Surveillance Toward Sharing Data with the Community: Qualitative Insights from a Childcare Center Illness Surveillance Program.

Childcare attendance is a recognized independent risk factor for pediatric infectious diseases due to the pathogen-sharing behaviors of young children and the crowded environments of childcare programs. The Michigan Child Care Related Infections Surveillance Program (MCRISP) is a novel online illness surveillance network used by community childcare centers to track disease incidence. It has been used to warn local public health departments about emerging outbreaks. The flow of data from MCRISP, however, remains largely unidirectional-from data reporter to public health researchers. With the intent to ultimately improve the system for users, we wanted to better understand how community illness data collected by MCRISP might best benefit childcare stakeholders themselves. Using a ground-up design approach, we conducted a series of focus groups among childcare directors participating in MCRISP. All primary data reporters from each of the 30 MCRISP-affiliated childcare centers were eligible to participate in the focus groups. A thematic assessment from the focus groups revealed that participants wanted surveillance system improvements that would (1) support subjective experiences with objective data, (2) assist with program decision making, (3) provide educational resources, and (4) prioritize the user's experience. Our findings support a framework by which community disease surveillance networks can move toward greater transparency and 2-way data flow. Ultimately, a more mutually beneficial surveillance system improves stakeholder engagement, provides opportunities for rapid mitigation strategies, and can help allocate timely resources in responding to emerging outbreaks and pandemics.