title: Developing a data infrastructure for a learning health system: the PORTAL network.
abstract: 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.
authors.affiliation: Kaiser Permanente Center for Effectiveness and Safety Research, Pasadena, California, USA.
authors.forename: Elizabeth A
authors.initials: EA
authors.lastname: McGlynn
authors.affiliation: Division of Research, Kaiser Permanente Northern California, Oakland, California, USA.
authors.forename: Tracy A
authors.initials: TA
authors.lastname: Lieu
authors.affiliation: Center for Health Research, Kaiser Permanente Northwest, Portland, Oregon, USA.
authors.forename: Mary L
authors.initials: ML
authors.lastname: Durham
authors.affiliation: Center for Health Research, Kaiser Permanente Northwest, Portland, Oregon, USA.
authors.forename: Alan
authors.initials: A
authors.lastname: Bauck
authors.affiliation: Center for Health Research, Kaiser Permanente Northwest, Portland, Oregon, USA.
authors.forename: Reesa
authors.initials: R
authors.lastname: Laws
authors.affiliation: Division of Research, Kaiser Permanente Northern California, Oakland, California, USA.
authors.forename: Alan S
authors.initials: AS
authors.lastname: Go
authors.affiliation: Mid-Atlantic Permanente Research Institute, Kaiser Permanente Mid-Atlantic States, Rockville, Maryland, USA.
authors.forename: Jersey
authors.initials: J
authors.lastname: Chen
authors.affiliation: Institute for Health Research, Kaiser Permanente Colorado, Denver, Colorado, USA.
authors.forename: Heather Spencer
authors.initials: HS
authors.lastname: Feigelson
authors.affiliation: Division of Research, Kaiser Permanente Northern California, Oakland, California, USA.
authors.forename: Douglas A
authors.initials: DA
authors.lastname: Corley
authors.affiliation: Department of Research & Evaluation, Kaiser Permanente Southern California, Pasadena, California, USA.
authors.forename: Deborah Rohm
authors.initials: DR
authors.lastname: Young
authors.affiliation: HealthPartners Institute for Education and Research, Minneapolis, Minnesota, USA.
authors.forename: Andrew F
authors.initials: AF
authors.lastname: Nelson
authors.affiliation: Denver Public Health, Denver Health, Denver, Colorado, USA.
authors.forename: Arthur J
authors.initials: AJ
authors.lastname: Davidson
authors.affiliation: Group Health Cooperative, Group Health Research Institute, Seattle, Washington, USA.
authors.forename: Leo S
authors.initials: LS
authors.lastname: Morales
authors.affiliation: Department of Pediatrics, University of Colorado, Aurora, Colorado, USA Colorado Clinical and Translational Sciences Institute, Aurora, Colorado, USA.
authors.forename: Michael G
authors.initials: MG
authors.lastname: Kahn
mesh_terms: D000553:Ambulatory Care / Q000458:organization & administration; D019058:Community Networks / Q000458:organization & administration*; D003195:Computer Communication Networks; D057286:Electronic Health Records / Q000458:organization & administration*; D006801:Humans; D033181:Information Dissemination; D008498:Medical Record Linkage; D017063:Outcome Assessment, Health Care / Q000458:organization & administration*; D018802:Patient-Centered Care; D014481:United States
keywords: colon cancer; comparative effectiveness research; congenital heart defects; data sharing; distributed databases; obesity