A process to deduplicate individuals for regional chronic disease prevalence estimates using a distributed data network of electronic health records.

Introduction: Learning health systems can help estimate chronic disease prevalence through distributed data networks (DDNs). Concerns remain about bias introduced to DDN prevalence estimates when individuals seeking care across systems are counted multiple times. This paper describes a process to deduplicate individuals for DDN prevalence estimates. Methods: We operationalized a two-step deduplication process, leveraging health information exchange (HIE)-assigned network identifiers, within the Colorado Health Observation Regional Data Service (CHORDS) DDN. We generated prevalence estimates for type 1 and type 2 diabetes among pediatric patients (0-17 years) with at least one 2017 encounter in one of two geographically-proximate DDN partners. We assessed the extent of cross-system duplication and its effect on prevalence estimates. Results: We identified 218 437 unique pediatric patients seen across systems during 2017, including 7628 (3.5%) seen in both. We found no measurable difference in prevalence after deduplication. The number of cases we identified differed slightly by data reconciliation strategy. Concordance of linked patients' demographic attributes varied by attribute. Conclusions: We implemented an HIE-dependent, extensible process that deduplicates individuals for less biased prevalence estimates in a DDN. Our null pilot findings have limited generalizability. Overlap was small and likely insufficient to influence prevalence estimates. Other factors, including the number and size of partners, the matching algorithm, and the electronic phenotype may influence the degree of deduplication bias. Additional use cases may help improve understanding of duplication bias and reveal other principles and insights. This study informed how DDNs could support learning health systems' response to public health challenges and improve regional health.

A Governance Framework to Integrate Longitudinal Clinical and Community Data in a Distributed Data Network: The Childhood Obesity Data Initiative.

CONTEXT: Integrating longitudinal data from community-based organizations (eg, physical activity programs) with electronic health record information can improve capacity for childhood obesity research. OBJECTIVE: A governance framework that protects individual privacy, accommodates organizational data stewardship requirements, and complies with laws and regulations was developed and implemented to support the harmonization of data from disparate clinical and community information systems. PARTICIPANTS AND SETTING: Through the Childhood Obesity Data Initiative (CODI), 5 Colorado-based organizations collaborated to expand an existing distributed health data network (DHDN) to include community-generated data and assemble longitudinal patient records for research. DESIGN: A governance work group expanded an existing DHDN governance infrastructure with CODI-specific data use and exchange policies and procedures that were codified in a governance plan and a delegated-authority, multiparty, reciprocal agreement. RESULTS: A CODI governance work group met from January 2019 to March 2020 to conceive an approach, develop documentation, and coordinate activities. Governance requirements were synthesized from the CODI use case, and a customized governance approach was constructed to address governance gaps in record linkage, a procedure to request data, and harmonizing community and clinical data. A Master Sharing and Use Agreement (MSUA) and Memorandum of Understanding were drafted and executed to support creation of linked longitudinal records of clinical- and community-derived childhood obesity data. Furthermore, a multiparty infrastructure protocol was approved by the local institutional review board (IRB) to expedite future CODI research by simplifying IRB research applications. CONCLUSION: CODI implemented a clinical-community governance strategy that built trust between organizations and allowed efficient data exchange within a DHDN. A thorough discovery process allowed CODI stakeholders to assess governance capacity and reveal regulatory and organizational obstacles so that the governance infrastructure could effectively leverage existing knowledge and address challenges. The MSUA and complementary governance documents can inform similar efforts.

Postpartum Contraceptive Use Among Denver-Based Adolescents and Young Adults: Association with Subsequent Repeat Delivery.

STUDY OBJECTIVE: To determine the association of postpartum contraceptive use with repeat deliveries among adolescents and youth. DESIGN: Retrospective, observational analysis of electronic health record data. SETTING: Single, urban facility in Denver, Colorado, United States. PARTICIPANTS: Women aged 10-24 years who gave birth between January 1, 2011 and December 31, 2015. INTERVENTIONS AND MAIN OUTCOME MEASURES: Postpartum contraceptive use and time to subsequent delivery. RESULTS: Among 4068 women, 1735 (43%) used postpartum contraception. In adjusted analyses, characteristics associated with contraceptive use included Hispanic ethnicity (relative risk [RR], 1.1; P = .03), incremental prenatal visits (RR, 1.01; P = .047), and attendance at postpartum care (RR, 1.60; P < .001). Long-acting reversible contraceptive (LARC) use was higher among women younger than 15 years (reference: 20-24 years; RR, 1.12; P < .001) and lower among women aged 18-19 years (RR, 0.93; P = .009). Hispanic women had higher rates of LARC use than non-Hispanic women (RR, 1.07; P = .02). Compared with inpatient LARC placement, outpatient placement (1-4 weeks and 5 or more weeks) rates were lower (RR, 0.77 and RR, 0.89, respectively; P < .001). Time to subsequent delivery was shorter in non-LARC users (median, 659 days) and contraception nonusers (median, 624 days) compared with LARC users (median, 790 days; P < .001); non-LARC postpartum contraceptive use did not significantly alter time to repeat delivery compared with that in women who used no method (P = .24). CONCLUSION: Postpartum LARC use reduced the risk of repeat pregnancy with a significant increase in time to the next delivery. Non-LARC use was not different from no contraceptive use in terms of time to repeat delivery.

Developing a Regional Distributed Data Network for Surveillance of Chronic Health Conditions: The Colorado Health Observation Regional Data Service.

Electronic health records (EHRs) provide an alternative to traditional public health surveillance surveys and administrative data for measuring the prevalence and impact of chronic health conditions in populations. As the infrastructure for secondary use of EHR data improves, many stakeholders are poised to benefit from data partnerships for regional access to information. Electronic health records can be transformed into a common data model that facilitates data sharing across multiple organizations and allows data to be used for surveillance. The Colorado Health Observation Regional Data Service, a regional distributed data network, has assembled diverse data partnerships, flexible infrastructure, and transparent governance practices to better understand the health of communities through EHR-based, public health surveillance. This article describes attributes of regional distributed data networks using EHR data and the history and design of Colorado Health Observation Regional Data Service as an emerging public health surveillance tool for chronic health conditions. Colorado Health Observation Regional Data Service and our experience may serve as a model for other regions interested in similar surveillance efforts. While benefits from EHR-based surveillance are described, a number of technology, partnership, and value proposition challenges remain.

Effects of a Presidential Candidate's Comments on HPV Vaccine.

During and after the 2011 Republican presidential debate, a candidate questioned the safety of HPV vaccine. The authors aimed to determine the effect of these comments on parents. A national sample of 327 parents with adolescent sons ages 11-17 years completed online surveys in fall 2010 (baseline, about 1 year before the debate) and 2011 (follow-up, about 1 month after the debate). The authors used regression models to examine the association of parents' awareness of the candidate's comments with HPV vaccine initiation among their sons, their willingness to get sons free HPV vaccine, and their beliefs about potential harms of HPV vaccine. Overall, 17% of parents reported hearing about the Republican presidential candidate's comments about HPV vaccine. Parents aware of the comments had a larger increase between baseline and follow-up in the belief that HPV vaccine might cause short-term health problems compared with parents who were not aware. Although the candidate's comments may have increased some parents' beliefs about the short-term harms of HPV vaccine, the comments had no effect on other beliefs, willingness to vaccinate, or behavior. Having accurate information about HPV vaccine that is readily available to the public during such controversies may diminish their effect.

Parents' and sons' beliefs in sexual disinhibition after human papillomavirus vaccination.

BACKGROUND: The concern that adolescent girls who receive human papillomavirus (HPV) vaccine may be more likely to have sex (ie, sexual disinhibition) has been commonplace in media coverage, but this belief is not held by many parents of adolescent girls. Because no studies have addressed this topic for adolescent boys, we examined parents' and their adolescent sons' beliefs in sexual disinhibition occurring after boys receive HPV vaccine. METHODS: A national sample of parents of adolescent boys (n = 547) and their sons (aged 15-17 years; n = 176) completed online surveys in fall 2010. We used multi-item scales to measure parents' and sons' beliefs in sexual disinhibition after HPV vaccination. We used multivariate linear regression to identify correlates of beliefs in sexual disinhibition. RESULTS: Less than a quarter of parents or sons agreed with statements suggesting that HPV vaccination leads to sexual disinhibition among adolescent boys (range, 20%-24%). Parents who had more liberal political affiliations (ß = -0.11), had a daughter who had received HPV vaccine (ß = -0.12), or had no daughter (ß = -0.10) reported weaker beliefs in sexual disinhibition. Parents who reported higher anticipated regret if their sons got HPV vaccine and fainted (ß = 0.18) indicated stronger beliefs in sexual disinhibition. Sons who perceived higher peer acceptance of HPV vaccination (ß = 0.44) or were Hispanic (ß = 0.21) had stronger beliefs in sexual disinhibition. CONCLUSIONS: Most parents and sons did not believe that HPV vaccination leads to sexual disinhibition among boys. Understanding the characteristics of parents and sons who hold these beliefs may help inform efforts to increase HPV vaccine uptake among boys.