Larkin to Participate in Patient-Centered Research Project
Written on in Research.

Accelerating Data Value across a National Community Health Center Network (ADVANCE) Project received project funding from PCORI: We are happy to announce that Larkin Community Hospital is a stakeholder in ADVANCE project which has been awarded $6,994,142 in funding by the Patient-Centered Research Institute (PCORI), which is led by OCHIN in partnership with Health Choice Network, Inc. ADVANCE is a part of a $93.5 million project approved to support 29 clinical research data networks across the country that together will form an ambitious new resource known as PCORnet, which is the National Patient-Centered Clinical Research Network. Follow the link: Under the ADVANCE project, HCN will receive $1,477,018 for an 18 month period ending June 2015. The funding to HCN will support the collection of outpatient data, technical expertise, and management of this data. Under the HCN network there are three sub-contracted major Miami hospitals which share patients within HCN’s target population. Larkin Community Hospital is one of the three major hospitals chosen, along with Jackson Memorial Hospital and Memorial Health Systems. PCORI envisions PCORnet to be a secure, national data network that improves the speed, efficiency, and use of patient-centered comparative effectiveness research (CER). By integrating data available in the 29 individual networks, PCORnet aims to provide access to a large amount of diverse, nationally representative health information that can support a range of study designs. It will reduce the time and effort needed to launch new studies and focus research on questions and outcomes especially useful to patients and those who care for them. Larkin Community Hospital’s and HCN’s participation in ADVANCE will benefit our patients by integration of outpatient, hospital, and managed care data which in turn will allow a comprehensive understanding of our patient population and how to better meet their health care needs.  In addition, ADVANCE’s inclusion in the prestigious PCORnet will facilitate opportunities for all stakeholders (hospitals and FQHC) and patients involved to participate in comparative effectiveness research and clinical trials.  Results from these comparative effectiveness research studies that include our patient population will also allow our health care providers and our patients to make better informed decisions. PCORI was authorized by the Patient Protection and Affordable Care Act of 2010 as a non-profit, nongovernmental organization. PCORI’s purpose, as defined by the law, is to help patients, clinicians, purchasers, and policy makers make better-informed health decisions by “advancing the quality and relevance of evidence about how to prevent, diagnose, treat, monitor, and manage diseases, disorders, and other health conditions.” PCORI funds research through contracts rather than grant awards, in which PCORI programmatic involvement with the awardees is expected throughout the post-award process. This has been mandated by Congress. Project Summary:Accelerating Data Value Across a National Community Health Center Network (ADVANCE) The proposed Accelerating Data Value across a National Community Health Center Network (ADVANCE) is a clinical data research network (CDRN); which will be led by the OCHIN Community Health Information Network in partnership with Health Choice Network and Fenway Health. Together they have outpatient clinical data from 97 federally-qualified health center (FQHC) health systems with 744 clinics serving safety net patients, many of whom are uninsured or publicly insured (a population often underrepresented in research). The ADVANCE CDRN will greatly accelerate the efforts to build a “community laboratory” of FQHCs in which to conduct patient-centered outcomes research (PCOR). Currently, the networks have electronic longitudinal outpatient clinical data on >1.6 million patients seen in the past 2 years (7/1/2011 — 6/30/2013) and a cumulative total of nearly 4.5 million patients ever seen within these systems. The networks will add inpatient data to this repository by strategically partnering with health plans and hospitals caring for the same patients; we will also add community-level and patient-reported data for these FQHC patient populations. This community-based CDRN will have significant stakeholder engagement and a nimble yet robust infrastructure, and will offer unique opportunities for those wishing to partner with them. The networks have a demonstrated ability to participate in such collaborations, and the ADVANCE CRDN will greatly expand their ability to do so.  The networks primary aims are to:

  1. Integrate outpatient, hospital, and community-level data into a single data management system.
  2. Expand their efforts to engage patients and clinicians who contribute to the design, implementation, and interpretation of comparative effectiveness research.
  3. Develop electronic systems for recruiting study participants and collecting patient-reported data.
  4. Strengthen the infrastructure of our community and academic partnerships to support PCOR, and support FQHCs to become learning health systems.
  5.  Build the capacity of our FQHC networks to meet research regulatory requirements.

Project Pillars: The ADVANCE CDRN's three project "pillars" will provide the core infrastructure and expertise for accomplishing these aims. The pillars will be operationalized by workgroups of patient investigators, community investigators, and academic investigators collaborating to meet project goals.

  • Data Pillar: This team will normalize, validate, and expand their clinical data repository. The networks have an integrated "horizontal" database of outpatient data from FQHC patients in 22 states, into which they will "vertically" integrate data from hospitals and health plans that serve the same patients in this population. They will also incorporate neighborhood-level data from the communities in which these patients live.
  • Cohort Pillar: This team will engage and recruit patient participants for three cohorts. (1) Common Disease Cohort: we have 91,668 adult patients in our CDRN population with diabetes. (2) Rare Disease Cohort: we have 2,617 adult patients co-infected with human immunodeficiency virus (HIV) and hepatitis C virus (HCV) in our CDRN patient population. (3) Obesity Cohort: we have >264,000 obese adult patients (body mass index > 30), of whom 21% have been diagnosed with diabetes, and another 7% have prediabetes or metabolic syndrome.
  • Regulatory Pillar: Building on OCHIN's existing policies, and working closely with their compliance officer and data stewardship committee, this workgroup will streamline their existing policies for data security, privacy and confidentiality, identify one central Institutional Review Board (IRB) for our CDRN, and ensure that all partners have a Federal-wide Assurance (FWA) that designates oversight to that IRB.

The Data, Cohort, and Regulatory Pillar workgroups will coordinate efforts with oversight by the ADVANCE advisory council. Each workgroup will dedicate members to liaise with the national coordinating center to ensure that these CDRN activities are well coordinated and synergistic with national efforts, and that the national network of CDRNs is able to include vulnerable and diverse FQHC patient populations in PCOR.


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