Patient-Powered Research Networks Aim To Improve Patient Care And Health Research

Abstract

The era of big data, loosely defined as the development and analysis of large or complex data sets, brings new opportunities to empower patients and their families to generate, collect, and use their health information for both clinical and research purposes. In 2013 the Patient-Centered Outcomes Research Institute launched a large national research network, PCORnet, that includes both clinical and patient-powered research networks. This article describes these networks, their potential uses, and the challenges they face. The networks are engaging patients, family members, and caregivers in four key ways: contributing data securely, with privacy protected; including diverse and representative groups of patients in research; prioritizing research questions, participating in research, and disseminating results; and participating in the leadership and governance of patient-powered research networks. If technical, regulatory, and organizational challenges can be overcome, PCORnet will allow research to be conducted more efficiently and cost-effectively and results to be disseminated quickly back to patients, clinicians, and delivery systems to improve patient health.

Patient- or Participant-Generated Registries

“…89 PCORnet, the network funded by PCORI that includes the PPRNs, advocates for meaningful patient and participant involvement in PGR governance as critical to the success of its PPRNs, recognizing that governance models will need to "respect the structure, history and culture of the PGRs" with each being at different points in the setup process of their organization.…”

National Patient-Centered Clinical Research Network (PCORnet) Phase I: Final Evaluation Report

“…As a result of this experience, CDRN participants had sophisticated data models and processes in place that could be adapted for use in PCORnet. In fact, some CDRN partners were primarily 37 Fleurence, Curtis, et al, 2014b;Fleurence, Beal, et al, 2014a. 38 Fleurence, Curtis, et al, 2014b;Engleberg Center for Health Care Reform at Brookings, 2014. 39 Fleurence, Curtis, et al, 2014b. 40 Fleurence, Curtis, et al, 2014b. 41 ETL "is a process in which programmers extract data from one or more data sources, transform the data to fit certain requirements or specifications, and then load the data into a desired location. In the context of PCORnet, CDRN and PPRN database programmers extract the data needed to populate the PCORnet common data model from the data sources which house the necessary information, transform their data to fit into the common data model, and then load that transformed data into a defined location" (PCORnet Central Desktop, undated).…”

“…Finally, if the barriers to community physician participation (cost, administrative burden) are reduced, their increased participation would not only enrich the overall perspective of practitioners in the clinical research field but would also increase the likelihood of the implementation of evidence-based practices based on PCORnet research. 58 Fleurence, Beal, et al, 2014a. 59 Fleurence, Beal, et al, 2014a. 60 Fleurence, Beal, et al, 2014a. 61 Fleurence, Beal, et al, 2014a. 62 Fleurence, Beal, et al, 2014a. 63 Collins, 2012. …”

“…71 Fleurence, Beal, et al, 2014a. 72 Fleurence, Beal, et al, 2014a. 73 Fleurence and Selby, 2014. 74 Fleurence and Selby, 2014. 75 Fleurence, Curtis, et al, 2014b. The next chapter provides details of RAND's evaluation methodology that was used to assess PCORnet's implementation progress in Phase I relative to the goals and requirements that PCORI established for the network.…”

Phelan‐McDermid syndrome data network: Integrating patient reported outcomes with clinical notes and curated genetic reports

“…The Phelan‐McDermid Syndrome Data Network (PMS_DN), a Patient Powered Research Network (Avillach et al, 2014; Fleurence, Beal, Sheridan, Johnson, & Selby, 2014; Frank et al, 2015) funded by the Patient Centered Outcomes Research Institute (PCORI, http://www.pcori.org), leverages patient clinical notes and PRO data to achieve its objective of furthering Precision Medicine research into PMS. The PMS_DN project is an example of a patient driven clinical research initiative where patients and their families are the primary stakeholders, managing all aspects of data governance and directing a patient‐centered research agenda in collaboration with academic research institutions.…”