Our ability to fully understand the complex, often inter-related, health and social issues of low-income women is hampered by our inability to link data that exists in multiple institutional sites. Low-income pregnant women and their infants experience a higher proportion of health and social problems, such as low birthweight and preterm birth, unintended pregnancies, domestic violence, parenting difficulties, poor mental health and welfare dependency (Olds and Kitzman, 1990). Less optimal infant and child health and development appears to have cumulative effects that may jeopardize a child's opportunity for school success and ultimately their functioning as competent adults (Sameroff, 2000).
Existing computer technology and data management that allows linking of multi-institutional data could be used to better understand such health and social problems. Data security, confidentiality issues, and institutional liability concerns are formidable barriers to linking data. A Data Utilization Enhancement award from Maternal and Child Health Bureau, has supported the community development of data security mechanisms to allow linking of data for the assessment of specific child, family and environmental risk and protective factors as well as community service utilization that may enhance or limit children's health, development and ultimately, their success in school. Participatory action research, linking university-based scientists, clinicians and community members to design, implement, interpret and apply new knowledge was utilized. Mechanisms for data security, confidentiality and institutional liability (health systems, school districts, and courts), including legal agreements will be presented. Preliminary findings from an observational population-based study will be presented.
Learning Objectives: At the conclusion of this session, the attendees will be able to: 1. Describe areas in maternal and child health that could most benefit from linked data 2. Recognize 2 of the most frequently encountered data security risks 3. Identify 3 methods for decreasing institutional liability and protecting client confidentiality
Keywords: Data/Surveillance, Maternal and Child Health
Presenting author's disclosure statement:
Organization/institution whose products or services will be discussed: None
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.