The Feasibility of Using Electronic Health Data for Research on Small Populations. Appendix to Part II


Table II.1. Key Informant Interviews

Using EHR Data - Target Populations

Asian Americans

┬╖         Rosy Chang Weir, PhD, Association of Asian Pacific Community Health Organizations (AAPCHO)

Adolescents with Autism Spectrum Disorders

┬╖         Lisa Croen, PhD, Division of Research, Kaiser Permanente Northern California, Kaiser Permanente Autism Research Program

Lesbian, Gay, Bisexual, and Transgender People

┬╖         Edward Callahan, PhD, UC Davis, School of Medicine

┬╖         Jesse Ehrenfeld, MD, Vanderbilt Program for LGBTI Health, Vanderbilt University School of Medicine

Individuals Living in Rural Areas

┬╖         Tom Elliott, MD, Essentia Institute of Rural Health (EIRH)

Using EHR DataтАФSmall Populations in General

┬╖         Philip Alberti, PhD, Association of American Medical Colleges

┬╖         Robert Califf, MD, Duke University (NIH Health Care Systems Research Collaboratory Coordinating Center)

┬╖         Louis Capponi, MD, New York City Health and Hospitals Corporation

┬╖         Kaytura Felix, MD, HRSA (co-program director for CHARN)

┬╖         Russ Glasgow, PhD, National Cancer Institute (NIH Health Care Systems Research Collaboratory)

┬╖         Patricia Franklin, MD) University of Massachusetts Medical School (FORCE-TJR)

┬╖         Erin Holve, PhD, AcademyHealth (Electronic Data Methods Forum)

┬╖         Mark Hornbrook, PhD, Kaiser Permanente NorthwestтАЩs Center for Health Research

┬╖         Harold Luft, PhD, Palo Alto Medical Foundation Research Institute

┬╖         Mary Ann McBurnie, PhD, Kaiser Permanente Center for Health Research (leads CHARN Central Data Management Coordination Center)

┬╖         Wilson Pace, MD, University of Colorado, Denver (DARTNet)

┬╖         Lucy Savitz, PhD, Intermountain Healthcare

┬╖         James Walker, MD, Siemens Medical Solutions, Inc.

┬╖         Richard Wasserman, MD, Pediatric Research in Office Settings (PROS), American Academy of Pediatrics and University of Vermont , and Alex Fiks, MD, Pediatric Research Consortium, ChildrenтАЩs Hospital of Philadelphia

┬╖         David West and Lisa Schilling, University of Colorado (DARTNet and SAFTINet)

┬╖         James Younkin, Keystone Health Information Exchange


Table II.2. Select Networks/Organizations Discussed in Part II

Research Network/Collaboratory

Participating Organizations Interviewed for Report

Funding sources


Community Health Applied Research Network [CHARN][1]

AAPCHO, Kaiser Permanente Center for Health Research (Coordination Center)


Network of federally qualified health centers and universities created to conduct patient-centered outcome research among underserved populations. Made up of four research node centers and one data coordinating center. Was originally funded in 2010.

HMO Research Network[2]

Kaiser PermanenteтАФNorthern California, Kaiser Permanente - Northwest, Essentia Institute of Rural Health, Palo Alto Medical Foundation Research Institute

Membership fees for network infrastructure. Participating systems apply for federal grants/contracts for specific research projects.

Consortium of 18 participating health care delivery systems focused on comparative effectiveness studies and translational health services research. Uses a Virtual Data Warehouse. Has been in operation since 1994.

Cancer Research Network[3]

Kaiser Permanente Northern California; Kaiser Permanente Northwest


An NCI-funded initiative made up of 9 health care systems [serving close to 9 million members] and 6 affiliate sites to support cancer research based in non-profit integrated health care delivery settings. All participating sites are also members of the HMO Research Network. First funded in 1999.

Health Care Systems Research Collaboratory[4]


Duke University (Coordinating Center)


Collaboratory aiming to provide a framework of implementation methods and best practices for clinical research done by health care systems. Collaboratory aims to support high impact demonstration projects and provide leadership and technical research expertise.

Electronic Data Methods Forum[5]



Project that fosters exchange and collaboration between different AHRQ-funded projects aiming to build infrastructure and methods for collecting and analyzing prospective electronic clinical data.

Registry of Patient Registries[6]



This project aims to engage stakeholders in the design of a database system that can search existing patient registries in the U.S.; facilitate the use of common data fields; provide searchable summary results; be able to search existing data for research purposes; serve as a recruitment mechanism for new registries. The project was launched in 2012.

Practice-Based Research Networks[7]

DARTNet, SAFTINet, Pediatric Research in Office Settings, Pediatric Research Consortium


Networks of primary care providers and practices joining together to answer community-based health care questions and transform research findings into practice. Consists of 116 primary care PBRNs and 20 affiliate PBRNs (non-primary care and international networks).

ACTION II network[8]

Association of Asian Pacific Community Health Organizations

Health and Hospitals Corporation of New York City

University of Massachusetts Medical School

Kaiser Permanente Northern California

Kaiser Permanente Northwest

Palo Alto Medical Foundation Research Institute

American Academy of Pediatrics

Vanderbilt University Medical Center


A network intended to promote innovation through field-based research in health care delivery by accelerating the diffusion of research into practice. Includes 17 partnerships and more than 350 participating organizations that provide health care to an estimated 50 percent of the U.S. population. ACTION II was initially funded in 2011. Its predecessor, ACTION,[9] was funded from in 2006-2010. Prior to ACTION, the Integrated Delivery System Network (IDSRN),[10] was funded from 2000-2005, and awarded nearly $26 million for 93 projects.



Table II.3. Technical Expert Panel

Technical Expert Panel

┬╖         Jody Blatt, CMS Center for Medicare and Medicaid Innovation

┬╖         Jesse Ehrenfeld, MD, Vanderbilt University School of Medicine

┬╖         Thomas Elliott, MD, Essentia Institute of Rural Health

┬╖         Kaytura Felix, MD, Health Resources and Services Administration.

┬╖         David Hickam, MD, Patient-Centered Outcomes Research Institute

┬╖         Mark Hornbrook, PhD, Kaiser PermanenteтАЩs Center for Health Research

┬╖         David Kaelber, MD, PhD, MetroHealth System

┬╖         Mary Kay Kenney, Health Resources and Services Administration

┬╖         Alice Leiter, JD, Center for Democracy & Technology

┬╖         Curt Mueller, PhD, Health Resources and Services Administration

┬╖         Mary Ann McBurnie, PhD, Kaiser Permanente Center for Health Research

┬╖         Wilson Pace, MD, Professor of Family Medicine, University of Colorado, Denver

┬╖         Shobha Srinivasan, PhD, National Cancer Institute.

┬╖         Michael Stoto, PhD, Georgetown University

┬╖         Phillip Wang, MD, PhD, National Institute of Mental Health

┬╖         Jonathan Weiner, DrPH, Johns Hopkins UniversityтАЩs Bloomberg School of Public Health


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