ADVANCE is one of the nation’s largest research networks of Community Health Centers (CHCs), which mostly serve patients on Medicaid and patients without insurance. ADVANCE’s mission is to improve health equity, health outcomes, policy, and primary care research using rigorous scientific methods. ADVANCE engages patients treated in CHCs in people-centered research to make sure that patients living at or below the Federal Poverty Level (FPL); immigrants; Black, Indigenous, and People of Color (BIPOC); parents and their children; members of the LGBTQIA communities; people experiencing homelessness; and many others who are often not included in research are represented.
OCHIN is the lead site for the ADVANCE Clinical Research Network (CRN), which includes Fenway Health, Health Choice Network (HCN), and Oregon Health and Science University (OHSU). At the time of writing, ADVANCE has clinical data from 164 CHCs and Federally Qualified Health Centers (FQHCs) with 1,504 clinic sites across 30 states. ADVANCE has current and retrospective data on over 6.5 million distinct patients at the time of writing. Clinical data included in the ADVANCE RDW includes data from ambulatory primary care, behavioral health, dental, public health, mobile vans, and other specialty clinics. The number of clinics in ADVANCE will continue to grow over time as more organizations join the OCHIN and HCN networks.
ADVANCE is led by Erika Cottrell, PhD, MPP, and John Heintzman, MD, MPH, with investigators, project managers, and data specialists from each partner site. ADVANCE also receives strategic guidance from the Health Information and Research Oversight Committee, a governance body of the OCHIN Board. The ADVANCE Core structure (Research, Engagement, Data and Analytics, and Administrative) provides operational, administrative, technical, scientific, and analytic implementation and support. ADVANCE team members have expertise in health equity and multiple chronic and acute diagnoses, and experience in research, informatics, engagement, and clinical care.
ADVANCE engages patients, healthcare professionals, and community members in all aspects of research and leadership. At least one patient investigator serves on the leadership team as well as on working groups with PCORnet®, the National Patient-Centered Clinical Research Network. The Patient Experience Panel consults on ADVANCE and PCORnet studies at all different stages of research, as do clinical interest groups comprised of healthcare professionals working in CHCs. It is these voices that ensure accessibility, relevance, and patient-centeredness. ADVANCE engagement work occurs remotely, is mediated by the individual networks within ADVANCE, and relies heavily on the relationships of each ADVANCE partner and their member health systems for access to clinician, staff, and patient recruitment.
Just as ADVANCE seeks to make engaging in research accessible, ADVANCE shares projects and results in many formats to make these accessible as well. ADVANCE maintains a public website, a blog, and publishes in newsletters and other community communications to describe its network, share resources, and disseminate research findings and lessons learned. In addition, projects are shared through scholarly pathways such as peer-reviewed publications, conference presentations, and posters.
The ADVANCE Research Data Warehouse (RDW), which includes all data and database structures from the PCORnet Common Data Model (CDM), is a centralized data warehouse with the primary goal of providing clean, accurate, and complete data to support patient-centered health equity research. ADVANCE has obtained external data sources including Oregon Medicaid data, Washington, Oregon, and California State Cancer Registry data, All-Payor All-Claims (APAC) data for Oregon, and Datavant Death Index data.
The ADVANCE RDW not only contains all tables and fields defined for the PCORnet CDM, but it also contains additional data needed for health equity research. These additional data are mostly unique to FQHCs and CHCs, which must collect such data for HRSA-mandated Uniform Data System (UDS) reports, Meaningful Use, Ryan White, and other CHC-related reporting purposes, and are typically not collected by non-CHC clinics. Such additional data in the ADVANCE RDW include Federal Poverty Level (FPL), patient primary language, migrant/seasonal worker status, housing status, veteran status, sexual orientation, gender identity, individual and geography-based Social Determinants of Health (SDH), many types of Patient-Reported Outcomes (PRO) data, and more. ADVANCE excels in capturing social determinants of health (SDH) data, leading national studies on the implementation and validation of SDH tools in partnership with SIREN (Social Interventions Research & Evaluation Network) and based on PROMIS (Patient Reported Outcomes Measurement Information System).