Opportunities to use health information for research are often missed because the entities with information, such as patients, hospitals, emergency departments, urgent care centers, outpatient practices, pharmacies, and payers, cannot easily collaborate with each other to share ideas and information. The patient-centered SCAlable National Network for Effectiveness Research (pSCANNER) is a clinical data research network that is contributing to PCORnet to close this gap.
pSCANNER’s mission is to generate scientific evidence to inform health decisions that are important to patients, clinicians, and other stakeholders by bringing these stakeholders together to foster collaboration, and by making the health data more accessible and usable. pSCANNER has a robust governance system that supports collaboration and provides all stakeholders the opportunity to inform pSCANNER policies and procedures. These stakeholders provide input to prioritize research topics; design research studies; and create educational, recruitment, and communication strategies to improve pSCANNER’s mission. pSCANNER partners use common processes to make their data (e.g., electronic health record, clinical, claims, pharmacy) easily usable so they can be combined and so research methods can be applied by all partners. The security, privacy, and confidentiality of identified patient data are maintained using national standards in Health Insurance Portability and Accountability Act of 1996–compliant environments.
pSCANNER focuses on three conditions: congestive heart failure, Kawasaki disease, and obesity. Patients, patient advocates, researchers, and clinicians from these conditions participate in every aspect of pSCANNER decision making and governance. Fully realized, pSCANNER has the potential to cover over 32 million patients diverse health systems in the Western United States.
View more about this project on PCORnet.org.
Khodyakov D, Grant S, Meeker D, Booth M, Pacheco-Santivanez N, Kim KK. Comparative analysis of stakeholder experience with an online approach to prioritizing patient-centered research topics. J Am Med Inform Assoc. 2016 Dec 23. pii: ocw157. doi: 10.1093/jamia/ocw157. [Epub ahead of print] PubMed PMID: 28011596. (Abstract only available)
Gong CL, Hay JW, Meeker D, Doctor JN. Prescriber preferences for behavioural economics interventions to improve treatment of acute respiratory infections: a discrete choice experiment. BMJ Open. 2016 Sep 22;6(9):e012739. doi: 10.1136/bmjopen-2016-012739. PubMed PMID: 27660322.
Article funding statement: Data for the project were collected by the University of Southern California's Medical Information Network for Experimental Research (Med-INFER) which participates in the Patient Scalable National Network for Effectiveness Research (pSCANNER) supported by the Patient-Centered Outcomes Research Institute (PCORI), Contract CDRN-1306-04819 (Dr Ohno-Machado).