Project Summary
Patient Outcomes Research To Advance Learning (PORTAL) is a new network that brings together four leading healthcare delivery systems: Kaiser Permanente, Group Health Cooperative, HealthPartners, and Denver Health. The 11 research centers affiliated with these systems will collaborate with patients, clinicians, and operational leaders to develop the infrastructure necessary to create a highly functioning clinical data research network. The senior leaders of the four health systems have provided their enthusiastic support for this proposal, as shown in the letters of support. The PORTAL network has nearly 11 million members enrolled in its delivery systems in nine states and the District of Columbia, has at least one site in each of the four major Census regions, and offers a diverse patient population that reflects the characteristics of US residents. The delivery systems that form PORTAL are integrated, have mature electronic health records (EHR) systems, and demonstrate sufficient variation in practice patterns to enable observational comparative effectiveness studies. The PORTAL sites are actively engaged in designing, conducting, and participating in clinical trials and are eager to expand their capacity to conduct pragmatic trials that produce information for patients and doctors that more closely reflects outcomes of how care is provided in the real world.
The PORTAL network proposes to create cohorts of:
- patients with a diagnosis of colorectal cancer;
- adolescents and adults with severe congenital heart disease (CHD); and
- adults who are overweight or obese, including those who have prediabetes or diabetes.
The cohort development activity will demonstrate that the PORTAL network is able to meet the 10 criteria for a clinical data research network (CDRN) specified in the PCORI funding announcement. Further, PORTAL will offer a scientifically sound set of cohorts on which to conduct comparative effectiveness research and a foundation on which to build future cohorts.
The organization of the PORTAL network emphasizes the central role of engaged patients, clinicians, and operational leaders in the governance of the network, including participating in key decisions about cohort construction. We have created three interlocking Councils (Patient Engagement, Clinician Engagement, and Operational Engagement) that together constitute the PORTAL advisory committee. A plan for how these groups will be actively and meaningfully involved throughout the project is described in the proposal, and representatives of each of these groups were engaged in developing the proposal. By engaging broadly with Fight Colorectal Cancer, the Adult Congenital Heart Disease Association, Smart Patients, and our members, we will build considerable enthusiasm and excitement for pursuing high-priority research questions related to our cohorts.
The data systems available to the PORTAL network are comprehensive, mature, and have demonstrated their utility in previous collaborative networks and projects. Interoperability among the sites is achieved through the use of a common data model, which is built on a foundation established by the HMO Research Network, and has been expanded through Kaiser Permanente's investments in developing additional content areas. Data security, patient privacy, and confidentiality are assured through the use of established mechanisms that have been successful across multiple combinations of networks, sites, and types of projects.
We believe the PCORI funding will enable the PORTAL sites to efficiently develop subsequent cohorts over time and apply the approaches developed for PORTAL to existing or novel cohorts. We expect to be a contributing member of a national network of networks and look forward to helping to advance the nation's ability to answer questions that are important to patients about what works best for whom under what circumstances. We believe that the organizational structure that we establish through PORTAL will substantially increase opportunities to translate research findings back into improvements in the delivery of health care.
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View more about this project on PCORnet.org.
Koebnick C, Fischer H, Daley MF, Ferrara A, Horberg MA, Waitzfelder B, Young DR, Gould MK. Interacting effects of obesity, race, ethnicity and sex on the incidence and control of adult-onset asthma. Allergy, Asthma & Clinical Immunology. 2016 Oct. doi:10.1186/s13223-016-0155-8.
Developing a Data Infrastructure for a Learning Health System: The PORTAL Network
Elizabeth A. McGlynn, Tracy A. Lieu, Mary L. Durham et al., "Developing a Data Infrastructure for a Learning Health System: The PORTAL Network," JAMIA 21(4) (July 2014): 596-601.
Paolino AR, McGlynn EA, Lieu T, Nelson AF, Prausnitz S, Horberg MA, Arterburn DE, Gould MK, Laws RL, Steiner JF. Building a Governance Strategy for CER: ThePatient Outcomes Research to Advance Learning (PORTAL) Network Experience. EGEMS (Wash DC). 2016 Mar 28;4(2):1216. doi: 10.13063/2327-9214.1216. eCollection 2016.PubMed PMID: 27141524; PubMed Central PMCID: PMC4827785.
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