VOLUME 22 䡠 NUMBER 15 䡠 AUGUST 1 2004
JOURNAL OF CLINICAL ONCOLOGY
Understanding Cancer Treatment and Outcomes:
The Cancer Care Outcomes Research and
Surveillance Consortium
*See Acknowledgment for Authors and Affiliations
Cancer treatments and outcomes are less than optimal
for many patients in the United States.1,2 To understand the
reasons for such variations in care, the National Cancer
Institute (NCI) has funded the Cancer Care Outcomes Re-
search and Surveillance (CanCORS) Consortium. This
consortium is a centerpiece of the NCI’s ongoing initiative
to improve cancer care.3,4 The purpose of this commentary
is to introduce the goals and methods of the CanCORS
Consortium to the broader community of cancer research-
ers and clinicians, many of whom are caring for patients
participating in this study.
The CanCORS Consortium is conducting a rigorous
observational study to identify clinically important differ-
ences in cancer treatment and outcomes and evaluate the
reasons for these differences across a wide range of patients,
health care providers, and organizations.5 This approach is
designed to complement randomized clinical trials of spe-
cific treatments that are typically conducted among highly
selected patients and providers.6 Prior observational studies
have also assessed selected groups of patients or used data-
bases with limited clinical information. In contrast, the
CanCORS Consortium will collect much more detailed
data from patients, physicians, and medical records to sup-
port more comprehensive analyses of the reasons for varia-
tions in treatment and outcomes.
The consortium has two principal research aims. The
first aim is to determine how the characteristics and beliefs
of cancer patients and providers and the characteristics of
health care organizations influence treatments and out-
comes, spanning the continuum of cancer care from diag-
nosis to recovery or death. This research is not designed to
develop measures of quality of care per se, but it will help to
guide the use of such measures in the future.7 The second
aim is to evaluate the effects of specific therapies on patients’
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Copyright © 2023 American Society of Clinical Oncology. All rights reserved.
COMMENTS AND CONTROVERSIES
survival, quality of life, and satisfaction with care, supple-
menting rather than substituting for data from randomized
clinical trials.
Organized in 2001 through a cooperative agreement
with independent investigators across the country,8 the
consortium’s mission is to evaluate the care of newly diag-
nosed patients with lung or colorectal cancer in multiple
regions and health care delivery systems. This collaboration
represents a new model for studying cancer care: a large,
distributed, multidisciplinary team of investigators collect-
ing shared data. This approach enables the consortium to
address a broader array of important clinical and policy
questions than would typically be feasible at a single site:
Why are there racial, ethnic, and socioeconomic differences
in cancer care and outcomes?9-11 Why do older patients
receive less intensive treatment for cancer?12-16 How do
patients and physicians make decisions about therapies for
metastatic cancer?17 Why do cancer outcomes vary by case
volume?18-21 Why is participation in clinical trials so low for
lung and colorectal cancer? Are patients’ symptoms recog-
nized and treated effectively? What is the effectiveness of
therapies such as adjuvant chemotherapy for stage III colon
cancer and first-line chemotherapy for metastatic lung or
colorectal cancer among patients in the community who
have generally not been included in clinical trials, including
older patients or those with substantial comorbidity?6
The consortium is composed of six research groups
funded by the NCI and one research group funded by the
Department of Veterans Affairs (Table 1). The seven groups
include five geographically defined regions, five integrated
health care delivery systems in the NCI-funded Cancer Re-
search Network, and 10 Veterans hospitals (Fig 1). These
study sites have a total population of 29.6 million people.
During the year 2000, more than 15,000 people were diag-
Journal of Clinical Oncology, Vol 22, No 15 (August 1), 2004: pp 2992-2996
DOI: 10.1200/JCO.2004.06.020
 Comments and Controversies

Table 1. Estimated Total Population and Number of Incident Patients With Lung Cancer and Colorectal Cancer in 2000 by Study Site
No. of Incident
Total Cancer Patients
Population
Study Site Collaborating Organizations (n) Lung Colorectal
ⴱ
Alabama University of Alabama, Birmingham 4,447 3,271 2,204
Iowa University of Iowaⴱ 2,926 1,854 —
Los Angeles County, California University of California, Los Angelesⴱ 9,519 3,860 3,862
RAND
Northern California (8 counties†) Harvard Medical Schoolⴱ
Northern California Cancer Center 7,741 4,125 3,351
Kaiser Permanente Northern California
North Carolina (22 eastern/central counties‡) University of North Carolinaⴱ 2,666 — 1,335
Cancer Research Network (integrated delivery systems) Dana-Farber Cancer Instituteⴱ 1,752 995 741
Seattle, Washington Group Health Cooperative
Boston, Massachusetts Harvard Pilgrim Health Care
Detroit, Michigan Henry Ford Health System
Hawaii Kaiser Permanente Hawaii
Portland, Oregon Kaiser Permanente Northwest
Veterans Health Administration (10 VHA hospitals§) Department of Veterans Affairs Medical 520 1,253 630
Center, Durham, North Carolinaⴱ
ⴱ
Primary grantee organization.
†Alameda, Contra Costa, Sacramento, San Francisco, San Joaquin, San Mateo, Santa Clara, and Solano counties.
‡Alamance, Bertie, Chatham, Durham, Edgecombe, Greene, Guilford, Harnett, Johnston, Lee, Lenoir, Martin, Montgomery, Moore, Nash, Orange, Pamlico,
Pitt, Randolph, Wake, Wayne, and Wilson counties.
§Baltimore, MD; Biloxi, MS; Chicago, IL; Durham, NC; Minneapolis, MN; Nashville, TN; New York, NY; Portland, OR; Temple, TX; and Tucson, AZ.

nosed with lung cancer and more than12,000 people were
diagnosed with colorectal cancer in these sites.
Enrollment of patients in the CanCORS study began in
September 2003 and will continue for approximately 18
months. Patients 21 years of age and older with newly
diagnosed invasive non–small-cell or small-cell lung cancer
or adenocarcinoma of the colon or rectum are eligible and
are being identified within 3 months of diagnosis.22 Across
all sites, approximately 5,000 patients with lung cancer and
5,000 patients with colorectal cancer will be enrolled. Sev-
eral sites are oversampling African American, Hispanic, and
Asian or Pacific Islander patients, so an estimated 64% of
the study cohort will be white, 20% African American, 8%
Hispanic, and 8% Asian or Pacific Islander.
Three types of primary data are being collected for the
CanCORS study: patient surveys, physician surveys, and
data from medical records. The patient survey (available on
request at http://www.cancors.org/public) has been de-
signed to assess a broad range of topics for which patients
are typically the best source of information, including their
decision making about major treatments, symptoms of pain
and depression, assessments of their care, and financial

Fig 1. Sites of Cancer Care Out-

comes Research and Surveillance pa-
tient enrollment within geographic
areas (F), integrated health care deliv-
ery systems (E), and Veterans Health
Administration hospitals (■)

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Copyright © 2023 American Society of Clinical Oncology. All rights reserved.
 Ayanian et al
burdens related to treatment. Many items and scales have
been obtained from prior published surveys, such as ques-
tions about patients’ symptoms and quality of life.23-25
To enhance the diversity of the cohort, telephone inter-
views are being conducted in English, Spanish, and Man-
darin and Cantonese Chinese. For patients who are too ill
to complete the survey and those who have died, an inter-
view with a family member or another surrogate who
is familiar with the patients’ condition and treatment is
being conducted.
To understand how physicians’ beliefs and character-
istics influence the processes of care and outcomes of pa-
tients in the CanCORS study, physicians who made
referrals for cancer care, treated cancer-related symptoms,
or were involved in decisions about treatment are being
surveyed. This survey focuses on physicians’ beliefs about
the effectiveness of treatments for lung or colorectal cancer
in various clinical scenarios, but does not ask questions
about the treatment of specific CanCORS patients. Data
from the physician survey will be linked with information
from the patient survey and medical records to explain
observed variations in treatment and outcomes.
Important data to be obtained from medical records in-
clude cancer-related diagnostic procedures, staging proce-
dures, surgery, chemotherapy, and radiation therapy. Special
effort is being devoted to identify reasons that potentially
appropriate treatments were not provided to patients. Key
predictors of clinical outcomes are also being collected, includ-
ing tumor stage, comorbid illnesses,26-28 and relevant test
results.29-31 After obtaining patients’ consent to review medi-
cal records, research staff will contact hospitals and physicians
to request photocopies of medical records or review these
records on-site at hospitals and physicians’ offices.
Practicing physicians who care for patients with lung
cancer or colorectal cancer in the CanCORS study will have
numerous opportunities to contribute to the success of this
important research endeavor. Physicians can encourage
their patients to consider participating, facilitate contact
with surrogate respondents for patients who have died, and
provide research staff with reasonable access to office
records for patients who have given written consent to
release these data. Many physicians will also be invited to
share their views on cancer treatment through the confi-
dential physician survey. High rates of participation by
eligible patients and physicians are essential to enroll repre-
sentative cohorts and obtain high-quality data.
The CanCORS study has three major strengths that
together distinguish it from prior studies of cancer care.
First, diverse cohorts with each type of cancer are being
prospectively enrolled from multiple regions and health
care systems. Second, patients are being surveyed relatively
soon after diagnosis, so that their beliefs, symptoms, and
health care experiences can be assessed in a timely manner.
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Copyright © 2023 American Society of Clinical Oncology. All rights reserved.
Third, by blending extensive surveys of patients and physi-
cians with detailed clinical data from medical records, the
study has unparalleled breadth and depth.
The consortium also faces several major challenges.
Patients with more advanced cancer may be difficult to
interview because of the rapid progression of their disease,
so special efforts are being made to recruit and interview
these patients or their surrogates. To facilitate access to
medical records under new federal privacy regulations re-
cently implemented under the Health Insurance Portability
and Accountability Act,32 all procedures for data collec-
tion are compliant with these regulations. An important
analytic challenge is to account for potential selection
biases and confounding that may influence patients’
treatment choices and outcomes. With detailed clinical
and demographic data, rigorous statistical methods, such
as propensity scores or instrumental variables, will be
used to meet this challenge.33,34
The CanCORS Consortium is one of the most compre-
hensive observational studies ever undertaken to under-
stand the experiences, treatments, and outcomes of patients
with lung cancer or colorectal cancer in the United States.
Several other studies of cancer care have demonstrated the
feasibility of the consortium’s research methods, including
detailed surveys of patients and physicians and reviews of
medical records.10,16,35-38 Building on these prior studies,
the consortium will inform ongoing efforts to develop data
systems for monitoring the quality of cancer care, investi-
gating disparities in treatments and outcomes, and identi-
fying opportunities to improve patients’ experiences with
cancer.39 With the active participation of patients and their
physicians, the CanCORS Consortium represents an un-
precedented opportunity to understand cancer care in the
United States more fully, thereby providing crucial insights
to clinicians and policy-makers for improving the care of
patients with cancer.
Note: This study is supported by grants from the Na-
tional Cancer Institute (U01 CA93324, U01 CA93326, U01
CA93329, U01 CA93332, U01 CA93339, U01 CA93344,
and U01 CA93348) and the Department of Veterans Affairs
(CRS 02-164).
■ ■ ■
Acknowledgment
John Z. Ayanian, Division of General Medicine, Depart-
ment of Medicine, Brigham and Women’s Hospital, Depart-
ment of Health Care Policy, Harvard Medical School, Boston,
MA; Elizabeth A. Chrischilles and Robert B. Wallace, De-
partment of Epidemiology, College of Public Health, Univer-
sity of Iowa, Iowa City, IA; Robert H. Fletcher, Department of
Ambulatory Care and Prevention, Harvard Medical School/
Harvard Pilgrim Health Care, Boston, MA; Mona N. Fouad
JOURNAL OF CLINICAL ONCOLOGY
 Comments and Controversies
and Catarina I. Kiefe, Division of Preventive Medicine, De-
partment of Medicine, University of Alabama at Birmingham,
Birmingham, AL; David P. Harrington and Jane C. Weeks,
Departments of Biostatistical Science and Medical Oncology,
Dana-Farber Cancer Institute, Boston, MA; Katherine L.
Kahn and Jennifer L. Malin, RAND, Santa Monica, CA, and
Divisions of General Internal Medicine–Health Services Re-
search and Hematology-Oncology, Department of Medicine,
University of California Los Angeles, Los Angeles, CA; Joseph
Lipscomb and Arnold L. Potosky, Division of Cancer Control
and Population Sciences, National Cancer Institute, Rockville,
MD; Dawn T. Provenzale, Department of Veterans Affairs
Medical Center, Durham, NC; Robert S. Sandler, Division of
Gastroenterology and Hepatology, Department of Medicine,
University of North Carolina, Chapel Hill, NC; Michelle van
Ryn, Department of Veterans Affairs Medical Center, Minne-
apolis, MN; Dee W. West, Northern California Cancer Cen-
ter, Union City, CA.
Authors’ Disclosures of Potential
Conflicts of Interest
The following authors or their immediate family
members have indicated a financial interest. No conflict
exists for drugs or devices used in a study if they are not
being evaluated as part of the investigation. Acted as a
consultant within the past 2 years: Katherine L. Kahn,
American Society of Clinical Oncology; Jennifer L. Malin,
PacificCare Prescription Solutions, Intelligent Healthcare;
Dawn T. Provenzale, Council of Healthcare Advisors;
Robert S. Sandler, GlaxoSmithKline, Takeda, TAP,
Novartis, Procter & Gamble, Merck. Performed contract
work within the past 2 years: Elizabeth A. Chrischilles,
Amgen, Inc; Robert S. Sandler, Merck. Received more
than $2,000 per year from a company for either of the past
2 years: Elizabeth A. Chrischilles, Amgen, Inc; Robert
S. Sandler, GlaxoSmithKline, Takeda, TAP, Novartis,
Procter & Gamble, Merck.
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