Building Data Infrastructure to Evaluate and Improve Quality: PCORnet.

The goal of PCORnet is to create a community of research that includes patients, clinicians, and health care delivery systems to improve the nation's ability to conduct comparative-effectiveness research.

Treatment patterns for ductal carcinoma in situ from 2000-2010 across six integrated health plans.

Considerable debate exists about the optimal treatment of ductal carcinoma in situ (DCIS). Using electronic data sources, we examined first course treatment patterns among women aged 18 years and older diagnosed with DCIS between 2000-2010 from six Kaiser Permanente (KP) regions. We calculated the proportion of patients receiving breast conserving surgery (BCS), BCS plus radiation therapy, unilateral mastectomy, bilateral mastectomy, and hormone therapy.

Using Medicaid and CHIP claims data to support pediatric quality measurement: lessons from 3 centers of excellence in measure development.

Objective: We sought to explore the claims data-related issues relevant to quality measure development for Medicaid and the Children's Health Insurance Program (CHIP), illustrating the challenges encountered and solutions developed around 3 distinct performance measure topics: care coordination for children with complex needs, quality of care for high-prevalence conditions, and hospital readmissions.

Methods: Each of 3 centers of excellence presents an example that illustrates the challenges of using claims data for quality measurement.

Results: Our Centers of Excellence in pediatric quality measurement used innovative methods to develop algorithms that use Medicaid claims data to identify children with complex needs; overcome some shortcomings of existing data for measuring quality of care for common conditions such as otitis media; and identify readmissions after hospitalizations for lower respiratory infections.

Developing a data infrastructure for a learning health system: the PORTAL network.

The Kaiser Permanente & Strategic Partners Patient Outcomes Research To Advance Learning (PORTAL) network engages four healthcare delivery systems (Kaiser Permanente, Group Health Cooperative, HealthPartners, and Denver Health) and their affiliated research centers to create a new national network infrastructure that builds on existing relationships among these institutions. PORTAL is enhancing its current capabilities by expanding the scope of the common data model, paying particular attention to incorporating patient-reported data more systematically, implementing new multi-site data governance procedures, and integrating the PCORnet PopMedNet platform across our research centers. PORTAL is partnering with clinical research and patient experts to create cohorts of patients with a common diagnosis (colorectal cancer), a rare diagnosis (adolescents and adults with severe congenital heart disease), and adults who are overweight or obese, including those with pre-diabetes or diabetes, to conduct large-scale observational comparative effectiveness research and pragmatic clinical trials across diverse clinical care settings.

Comparative effectiveness topics from a large, integrated delivery system.

Objective: To identify high-priority comparative effectiveness questions directly relevant to care delivery in a large, US integrated health care system.

Methods: In 2010, a total of 792 clinical and operational leaders in Kaiser Permanente were sent an electronic survey requesting nominations of comparative effectiveness research questions; most recipients (83%) had direct clinical roles. Nominated questions were divided into 18 surveys of related topics that included 9 to 23 questions for prioritization.