PCORnet embodies a “community of research” by uniting people, clinicians, health systems, and researchers, resulting in a national evidence system underpinned by a Common Data Model. Researchers can access, under strict privacy and security protections, large sets of health and healthcare data gathered in real-world settings, such as clinics and hospitals. The path to making PCORnet research ready has involved designing, developing, testing, and strengthening its infrastructure, functionality, and partnerships into a robust platform that harnesses the power of all stakeholders.
Comprehensive and Standardized Data
Healthcare data are often represented and recorded differently by different institutions, however true comparison requires consistency. The Common Data Model (CDM) is a way of organizing PCORnet’s broad and diverse data into a standard structure to enable accurate and rapid responses to research-related questions. Through the CDM, PCORnet links up millions of data points that were previously disparate – not only EHR data, but also data contributed by patients, clinicians, and health systems.
Recognition of the need for early stakeholder engagement has been critical to the efficient development of the CDM. To ensure all stakeholders have a voice, PCORnet has established four different venues for feedback—a CDM Modeling Working Group, CDM Stakeholder Sessions, a CDM Implementation Forum and CDM Interest Groups—all dedicated to developing and improving each iteration of the CDM so that research questions posed through PCORnet to hundreds of disparate institutions return accurate, trustworthy results.
Research Scope of PCORnet
Through its partner networks, PCORnet currently has data from approximately 122 million patients* who have had a medical encounter in the past 5 years, and has published milestone data on patient demographics and conditions of interest showcasing its research scope. The PCORnet Front Door allows potential investigators the ability to access the PCORnet resources, which can be leveraged for many types of research, such as:
- Pre-research Queries, including feasibility queries, engagement, and match-making.
- Observational Studies, including cross-sectional, epidemiological, health services, and comparative effectiveness or safety.
- Interventional Studies, including clinical trials, pragmatic randomized clinical trials, e-Identification, e-Consent, e-Randomization, e-Follow-up, and cluster randomization.
Demonstration Studies and Collaborative Research Groups
The strength of PCORnet as a “network of networks” depends on collaboration across all stakeholders and network partners, including PPRNs, CDRNs, and Health System Leaders.
The Demonstration Studies test PCORnet’s capabilities while answering key questions designed to help patients and those who care for them make better-informed health and healthcare decisions. In addition, they help advise the future of PCORnet by highlighting opportunities for improvement and enhancement.
PCORnet’s Collaborative Research Groups (CRGs) foster multi-network partnerships focused on developing new research questions that are highly-relevant to specific health topics, such as research methods, health care utilization, health conditions, or patient populations.
*Some individuals may have visited more than one network partner and would be counted more than once.