As the networks and studies within the National Patient-Centered Clinical Research Network, PCORnet, an initiative of the Patient-Centered Outcomes Research Institute (PCORI), continue to grow and mature, the impact of PCORnet itself is also growing. This growth was evident at AcademyHealth’s Annual Research Meeting (ARM) held June 25-27th in New Orleans where PCORnet leaders from around the nation presented posters, participated in panel discussions and highlighted their work in innovation workshops. For example:
- The work of three PCORnet Patient Powered Research Networks (PPRNs) were highlighted in the session “Effective Engagement in Rare Disease Research: What Does That Mean and How Do You Do It?” Megan O’Boyle, principal investigator of the Phelan-McDermid Syndrome Foundation, Elizabeth Cope, former principal investigator of NephCure, and Ann Lucas, principal investigator of DuchenneConnect all led this session which confronted critical gaps in methods for engaging patients in rare disease research using the three patient-powered research networks as case studies.
- Researchers from PCORnet’s Clinical Data Research Networks (CDRNs) participated in the session “Ensuring the Quality of Big Data for Health Services Research” which explored the PCORnet Common Data Model and the impact of data generation and management on data quality in order to produce valid and precise estimates for research. Iben Ricket, a senior data scientist for REACHnet, Lisa Schilling, the co-principal investigator for pSCANNER, and Bradley Hammill, a researcher with the Duke Clinical Research Institute working on the ADAPTABLE Study, all participated in this session in which PCORnet was discussed as a use-case for working with big data and PCORnet demonstration studies were highlighted.
- Mary Whooley a site principal investigator for pSCANNER from the University of California, San Francisco, participated in the session “From Data to Implementation and Back Again: Lessons from VA’s Emerging Learning Health System” which explored a range of Veteran’s Administration initiatives supporting development of a robust learning health system within the nation’s largest integrated health system. Whooley discussed PCORnet and the Observational Medical Outcomes Partnership (OMOP) Common Data Model.
The networking opportunities at AcademyHealth’s Annual Research Meeting offered PCORnet partners the opportunity to highlight their important work to new audiences. OneFlorida, a PCORnet CDRN, as well as PCORI itself, sponsored exhibit booths. OneFlorida included a running presentation at their booth educating attendees about the work of this network. REACHnet, a CDRN based in Louisiana, hosted many sessions at ARM. Finally, PCORnet held an invite-only breakfast to better educate researchers on how PCORnet works and to encourage engagement.
A number of PCORnet researchers presented posters at the conference, including:
- Building Strong Research Relationships: Early Development and Evaluation of Patient and Community Partner Engagement in PCOR (Authors: Rebekah Angove, Elizabeth Crull, Beth Nauman, Lindsey Rudov, Catherine Glover, and Lizheng Shi; Institutions: Louisiana Public Health Institute, Louisiana Public Health Institute, Patient Partner, and Tulane University)
- Collaborating for Synergy: The NephCure Kidney Network Adaptive Engagement Framework (Authors: Elizabeth Cope, Chelsey Fix, Kathleen Broderick, Julie Abramsom, Laura Mariani, Elodie Speye, Dori Bilik, Rachel Tocco, Danielle Norman, and Lauren Lee; Institutions: Aequitas LLC, Arbor Research Collaborative for Collaborative, NephCure Kidney International, and University of Michigan)
- Implementing Observational Research in PCORnet: Reusable Methods for Cohort Data Quality Assessment (Authors: Casie E Horgan, Jessica L Sturtevant, Roy Pardee, Lindsey E Petro, Jane Anau, Erick Moyneur, Valerie Carter, Kathleen M. McTigue, Jeffrey S. Brown, and David Arterburn; Institutions: Harvard Medical School and Harvard Pilgrim Health Care Institute, Group Health Research Institute, Statlog Consulting Inc., and University of Pittsburgh)
- Implementation of the Adaptable Computable Phenotype within the PCORnet Research Network: Opportunities and Challenges for Increasing Research Efficiency (Authors: Iben McCormick-Ricket Bradley Hammill, Holly Robertson, Lindsey Rudov, and Beth Nauman; Institutions: Louisiana Public Health Institute and Duke Clinical Research Institute)
- Non-Face-to-Face Chronic Care Management: A Qualitative Study Assessing the Implementation of a New CMS Reimbursement Strategy in Louisiana (Authors: Valerie A. Yeager, M. Kristina Wharton, Alisha Monnette, Beth Nauman, Eboni Price-Haywood, Rebekah Angove, and Lizheng Shi, PhD; Institutions: Tulane University, Louisiana Public Health Institute and Ochsner Health System)
You can follow the discussions that took place at ARM on twitter using the hashtag #ARM17.
If you are speaking or presenting at an upcoming conference or event, please keep the PCORnet communications team in the loop! Contact Jennifer Cook at email@example.com.
PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.