The Patient Outcomes Research to Advance Learning (PORTAL) network brings together leading healthcare delivery systems and affiliated research centers along with patients, clinicians, and operational leaders to develop the infrastructure necessary to conduct comparative effectiveness research.
In Phase I, PORTAL engaged patients through a patient engagement council and online advisors. Clinicians participated in a clinician engagement council, and researchers were represented on the steering committee. Building on PORTAL’s Virtual Data Warehouse, we constructed and populated the PCORnet common data model (CDM); data are available from 2009 to 2014 on about 17 million people. We created three cohorts: colorectal cancer survivors (n=12,956), adults with severe congenital heart defects (n=950), and people who are overweight or obese (n=4.9 million). All cohorts represent racially, ethnically, and geographically diverse populations. In 2014, PORTAL delivery systems conducted 1,516 Food and Drug Administration–regulated and other trials across a wide spectrum of clinical areas. PORTAL sites conduct pragmatic trials integrated into routine care delivery. We regularly collect selected patient-reported outcomes that can be used in research.
In Phase II, we will use a variety of formal and informal approaches to ensure highly collaborative stakeholder engagement. PORTAL will continue to develop its three cohorts, populate new versions of the PCORnet CDM, and refresh data on required cycles. We will participate in required queries. PORTAL complies with all federal, state, and local legal and regulatory requirements; attention to patient privacy and data security appears throughout the PORTAL governance policies. PORTAL systems have effective infrastructure in place to support clinical trials, including using electronic health record–enabled mechanisms for identifying eligible patients and collecting data. We have particular expertise in cancer clinical trials.
Our oversight framework ensures input from key stakeholders. Asking and answering important questions for patients and physicians and incorporating the findings into policy and practice is critical for fostering public trust. PORTAL has developed tools and activities that enable interested researchers (both within and outside of PORTAL and PCORnet) and other stakeholders to become aware of, engage with, and collaborate with PORTAL on research activities. We will collaborate with the Chronic Obstructive Pulmonary Disease Patient-Powered Research Network, Community Engaged Network for All, and Health eHeart Alliance in Phase II. Network sustainability is a multidimensional challenge that requires attention to both the technical infrastructure (governance, data, administration, knowledge sharing, funding) and the community building (mission, oversight framework, collaboration, relationship with delivery systems) dimensions of the approach. Sustaining PORTAL will depend on all of these stakeholders seeing gains to engagement with PORTAL and PCORnet that exceed what they might be able to accomplish within existing networks or without a network structure.
View more about this project on PCORnet.org.
Lewis KH, Gudzune KA, Fischer H, Yamamoto A, Young DR. Racial and ethnic minority patients report different weight-related care experiences than non-Hispanic Whites. Prev Med Rep. 2016 Jun 30;4:296-302. doi: 10.1016/j.pmedr.2016.06.015. PubMed PMID: 27486558.
Young DR, Waitzfelder BA, Arterburn D, Nichols GA, Ferrara A, Koebnick C, Yamamoto A, Daley MF, Sherwood NE, Horberg MA, Cromwell L, Lewis KH. The Patient Outcomes Research To Advance Learning (PORTAL) Network Adult Overweight and Obesity Cohort: Development and Description. JMIR Res Protoc. 2016 Jun 15;5(2):e87. doi: 10.2196/resprot.5589. PubMed PMID: 27307352. (Abstract only available)