Scientific & Data Resources
The CRN supports cancer research in integrated health care settings. These health care organizations provide a number of unique advantages for conducting population-based epidemiologic and health services research. Each participating institution has a defined population with insurance coverage and provision of most medical care with electronic medical records. The data that are available in the CRN provide greater breadth and depth of information than that available solely from medical claims data. Thus, most organizations provide the ability to identify study populations for epidemiologic studies, to examine aspects of care for health services research, and to generally conduct cutting-edge population sciences research.
- Community Linkages
- Population Coverage
- Characteristics of the Research Centers
- Characteristics of the Health Plans
- CRN Data Resources
- Accessing Datasets from Prior CRN Studies
All CRN sites are longstanding health care organizations with a stable presence in their communities. They have research centers and investigators – the backbone of the CRN and through which the CRN is administered – who understand their enrollee populations, the organization and delivery of care, and the associated data systems.
Because the CRN research centers are part of their parent health care organizations, the research that is conducted in the CRN setting can also take advantage of linkages with the clinical enterprise. The CRN provides the unique advantage of being able to work closely with clinical leaders who represent the best of community-based care in the communities in which they have a presence.
CRN member organizations have a combined population of nearly 9.5 million enrollees, or almost three percent of the US population. The age and sex distributions of enrollees collectively reflect those of the general US population, although individual plans vary substantially. The CRN includes population centers with a high percentage of African American enrollees (Henry Ford Health System); Asian Americans (Kaiser Permanente Hawai’i, Kaiser Permanente Northern California, and Kaiser Permanente Southern California); and Hispanics (Kaiser Permanente Southern California, Kaiser Permanente Northern California, and Kaiser Permanente Colorado). Participating organizations also provide care in urban, suburban, and rural settings. Racial, ethnic, geographic, and income diversity is an important strength of the CRN, which permits studies emphasizing effectiveness research focused within or comparing these subpopulations.
Characteristics of the Research Centers
CRN Research Centers are leading population sciences research organizations in their communities, and provide a gateway to conducting grant-funded research in their associated health care settings. Some may have strengths in particular disciplines, but all conduct population sciences research.
Table 1. Selected Characteristics of CRN Research Organizations
A list of site names and abbreviations are located at the bottom of the page.
|Research lab facility||•||•||•||•||•||•||•||•|
|2010 funding, all sources
|2010 federal funding, %||82||53||54||62||69||76||36||32||85|
Characteristics of the Health Plans
The integrated health care organizations with which the CRN research centers are affiliated consist of some of the longest-standing and largest non-profit HMOs in the United States. Many have a major presence in their communities, providing care to twenty percent or more of the populations in the communities in which they have a physical presence.
Table 2. Select Characteristics of Cancer Research Network Organizations and Membership
A list of site names and abbreviations are located at the bottom of the page.
|Covered lives in
Integrated delivery system†
|Age, y, %|
|Other / Unknown||61||9||41||26||39||28||27||30||0|
|Member Retention, %|
|At 1 y||82||99||91||85||87||85||85||88||95|
|At 3 y||63||86||66||72||75||68||71||83||92|
|At 5 y||52||63||54||63||66||58||61||70||92|
|Type of Insurance Coverage, %|
|Health Plan Facilities and Providers, N|
|Clinic sites owned/operated||26||36||22||17||464||27||97||63||20|
|Primary care providers||930||379||327||135||1500||880‡||5,300‡||295||120|
|Electronic Medical Record Availability|
Patients with insurance coverage and/or some but not the vast majority of care data available in EMR or other medical records.
† Covered lives in integrated delivery system: Comprehensive clinical data available in EMR
‡ Total contracted providers (primary care and specialty)
CRN Data Resources
CRN sites maintain longitudinal data resources that contain comprehensive health care delivery and patient information. The table below summarizes data resources supported and maintained by each participating CRN site. These data resources have been used for research for decades, for both single and multi-site studies. Early in the life of the CRN, CRN investigators and programmers realized that the multi-site distributed nature of collaborative research studies conducted in the CRN setting could benefit from the efficiency that would result from data standardization across CRN organizations. To achieve this goal, the Virtual Data Warehouse (VDW) was conceptualized, and now provides a backbone for many collaborative studies in the CRN and the Health Care Systems Research Network. The VDW consists of databases that are maintained locally at each Research Center, and these databases are built and maintained with a common set of standardized tables, variable names, and variable formats. Maintaining, updating, and validating the consistency and quality if the VDW, especially with respect to the cancer-related data elements, is an ongoing activity of the CRN Informatics Core. This is a critical ongoing process to maintain valid, quality data, as health care mandates and electronic medical record capabilities continually change.
Table 3. 2011 Status of VDW at CRN Sites
|Demographics||1974- 2011||1969- 2011||1958- 2011||1995- 2011||1960- 2011||1988- 2011||1992- 2011||1915- 2010||1999- 2009|
|Enrollment||1988- 2011||1998- 2011||1958- 2011||1997- 2011||1960- 2011||1988- 2011||1992- 2011||1960- 2010||1999- 2009|
|Utilization||1993- 2011||1998- 2011||1995- 2011||1995- 2011||1994- 2011||1981- 2011||1979- 2011||1988- 2009||1999- 2009|
|Diagnoses||1993- 2011||1998- 2011||1995- 2011||1995- 2011||1994- 2011||1981- 2011||1979- 2011||1988- 2009||1999- 2009|
|Procedures||1993- 2011||1994- 2011||1995- 2011||1995- 2011||1994- 2011||1981- 2011||1979- 2011||1988- 2009||1999- 2009|
|Tumor||1974- 2011||1987- 2011||1960- 2011||1944- 2009||1960- 2011||1998- 2008||1960- 2011||1972- 2011||IP|
|Pharmacy||1977- 2011||1992- 2011||1995- 2011||1995- 2011||1986- 2011||1992- 2011||1999- 2011||1990- 2010||1999- 2009|
|EverNDC||2011||2011||1996- 2011||1996- 2011||1986- 2011||1998- 2011||2011||2006||2009|
|Census||1989- 2008||2007- 2011||2009||1996- 2009||2004- 2008||1988- 2008||2000||2009||2003|
|Provider specialty||1993- 2011||1998- 2011||1995- 2011||2000- 2011||1994- 2011||1990- 2011||1979- 2011||1988- 2011||Partial|
|Vital Signs||2005- 2011||2000- 2011||1995- 2011||2005- 2011||1996- 2011||2004- 2011||2001- 2011||1999- 2010||2007- 2009|
|Death||1977- 2009||1990- 2009||1995- 2011||1995- 2007||1995- 2011||1988- 2011||1997- 2006||1990- 2008||2005- 2009|
|Lab Results||1998- 2011||2000- 2011||1995- 2011||1996- 2011||1997- 2011||1991- 2011||1985- 2011||Partial||1997- 2011|
IP = In process
GHRI = Group Health Cooperative (Group Health Research Institute)
HFHS = Henry Ford Health System (Center for Health Services Research)
KPCO = Kaiser Permanente Colorado (Institute for Health Research)
KPHI = Kaiser Permanente Hawai’i (Center for Health Research-Hawaii)
KPNC = Kaiser Permanente Northern California (Division of Research)
KPNW = Kaiser Permanente Northwest (Center for Health Research-Northwest)
KPSC = Kaiser Permanente Southern California (Department of Research & Evaluation)
MCRF = Marshfield Clinic (Marshfield Clinic Research Foundation)
MPCI = Fallon Community Health Plan (Meyers Primary Care Institute)
Accessing Datasets from Prior CRN Studies
The CRN has collected information about the availability of cancer-related datasets, from projects that were funded or enabled by the CRN, for use by other investigators. The goal is to facilitate the conduct of additional research (e.g. by National Cancer Institute fellows, CRN Scholars, early-stage career investigators) and publication of findings using these existing data.
The projects and associated investigators included in the downloadable spreadsheet (below) have agreed to be listed as contact people for these data to discuss possibilities for collaboration, however, being listed does not commit them to making their data available. Please contact the investigator directly (using the listed email address for the "contact person") if you have questions about their project or available data. When contacting any investigator, please make sure you cc: the CRN.
Excel spreadsheet of datasets (XLSX, 2.7 MB)