A focus area maturity model for a statewide master person index.

OBJECTIVE: The sharing of personally identifiable information across organizational boundaries to facilitate patient identification in Utah presents significant policy challenges. Our objective was to create a focus area maturity model to describe and evaluate our progress in developing a policy framework to support a statewide master person index (sMPI) for healthcare and public health operations and research in Utah. MATERIALS AND METHODS: We used various artifacts, including minutes from policy guidance committee meetings over a span of 18 months, a report from Utah's Digital Health Services Commission, and a draft technical requirements document to retrospectively analyze our work and create a focus area maturity model describing the domain of policy needed to support the sMPI. We then used our model to assess our progress and future goals. CONCLUSIONS: The focus area maturity model provides an orderly path that can guide the complex process of developing a functional statewide master person index among diverse, autonomous partners. While this paper focuses on our experience in Utah, we believe that the arguments for using a focus area maturity model to guide the development of state or regional MPIs is of general interest.

Prenatal and perinatal factors associated with intellectual disability.

Prenatal and perinatal risk factors associated with intellectual disability (ID) were studied in 8-year-old Utah children from a 1994 birth cohort (N  =  26,108) using broad ascertainment methods and birth records following the most current recording guidelines. Risk factor analyses were performed inclusive and exclusive of children with a known or suspected underlying genetic disorder. Risk factors identified were poly/oligohydramnios, advanced paternal/maternal age, prematurity, fetal distress, premature rupture of membranes, primary/repeat cesarean sections, low birth weight, assisted ventilation greater than 30 min, small-for-gestational age, low Apgar scores, and congenital infection. Although several risk factors lost significance once children with underlying genetic disorders were excluded, socioeconomic variables were among those that maintained a prominent association with increased ID risk.

Electronic end-of-life care registry: the Utah ePOLST initiative.

As a patient's end-of-life approaches, it is typical for the disease to be the focus of treatment instead of the dying patient. There is limited congruence between the care preferred by patients and the treatment actually delivered to patients during their end-of-life. The Physician Orders for Life-Sustaining Treatment Paradigm has been endorsed or is in development in all but three states and the District of Columbia in an effort to ensure that patients are provided with adequate opportunities to specify their end-of-life care preferences. However, most states are using paper forms to document these preferences which may be inaccessible when needed. We have developed an electronic end-of-life care registry that allows authorized users to store and retrieve information pertaining to patients' end-of-life care preferences. In this paper, we describe (a) the requirements identified for the registry from the users' perspective and (b) the design and development of the electronic registry.

Sociodemographic risk factors associated with autism spectrum disorders and intellectual disability.

This study examined the hypotheses that (1) sociodemographic risk factors in young children with autism spectrum disorders (ASD) and/or intellectual disability (ID) significantly vary by disability type, and (2) measures of income (mean adjusted gross income, mean federal taxes paid, and mean tax exemptions) significantly increase between 1994 and 2002, and are lower in families with a child with ASD and/or ID compared with the general population. A multiple source surveillance system utilizing a retrospective record review was used to identify ASD and ID cases from a population of 26,108 eight-year-old children born in 1994 and living in Utah in 2002. ASD without ID (ASD-only, n = 99) cases were significantly more likely to be male (P<0.01) and have mothers of White non-Hispanic ethnicity (P = 0.02). ASD with ID (ASD/ID, n = 33) cases were significantly more likely to be male (P<0.01) and have mothers older than 34 years (P = 0.03). ID without ASD (ID-only, n = 113) cases were significantly more likely to have fathers older than 34 years (P<0.01) and were significantly less likely to have mothers with >13 years education (P<0.01). Measures of income for cases at birth and at 8 years of age were not significantly lower than the general population and mean adjusted income of cases significantly increased from birth to 8 years of age. Investigations focused on defining early sociodemographic risk factors by different endophenotypes of ASD may assist in identifying risk factors for this complex group of neurodevelopmental disorders. Aggregate tax information may be a unique resource to utilize for population-based analysis.

A case for using grid architecture for state public health informatics: the Utah perspective.

This paper presents the rationale for designing and implementing the next-generation of public health information systems using grid computing concepts and tools. Our attempt is to evaluate all grid types including data grids for sharing information and computational grids for accessing computational resources on demand. Public health is a broad domain that requires coordinated uses of disparate and heterogeneous information systems. System interoperability in public health is limited. The next-generation public health information systems must overcome barriers to integration and interoperability, leverage advances in information technology, address emerging requirements, and meet the needs of all stakeholders. Grid-based architecture provides one potential technical solution that deserves serious consideration. Within this context, we describe three discrete public health information system problems and the process by which the Utah Department of Health (UDOH) and the Department of Biomedical Informatics at the University of Utah in the United States has approached the exploration for eventual deployment of a Utah Public Health Informatics Grid. These three problems are: i) integration of internal and external data sources with analytic tools and computational resources; ii) provide external stakeholders with access to public health data and services; and, iii) access, integrate, and analyze internal data for the timely monitoring of population health status and health services. After one year of experience, we have successfully implemented federated queries across disparate administrative domains, and have identified challenges and potential solutions concerning the selection of candidate analytic grid services, data sharing concerns, security models, and strategies for reducing expertise required at a public health agency to implement a public health grid.

Mission-driven priorities: public health in health information exchange.

Developing state- and nationwide health information exchange (HIE) is one of the health priorities defined in the American Recovery and Reinvestment Act. States are expected to take leadership in statewide planning and implementation. To balance limited resources among mandated responsibilities and emerging HIE accountability, we maintain that state public health practitioners must integrate HIE into our mission-driven practice in five priority areas: 1) connecting real-time disease surveillance and notifiable case reporting through HIE to better protect citizens; 2) sharing public health-managed clinical information through HIE for preventive services, 3) conduct health education for targeted populations via HIE to promote healthy lifestyles; 4) leverage public health informatics with Medicaid information system to provide quality healthcare; and 5) serve as a regulator for standardized HIT to participate in healthcare reform. We summarize public health's broad practice into "Five P's" and link each domain's historical foundation, current and proposed practices to sustain success.