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Introduction

Introduction In 1994, researchers from 10 integrated care system research centers formed the HMO Research Network (HMO RN), an organization designed to develop and implement collaborations across health care systems (1). We hoped that this organization would foster research to address important questions best answered by the collaborative involvement of multiple health systems and research centers. Four years later, a consortium of members of the network responded to a National Cancer Institute (NCI) request for applications that was designed to take advantage of the extraordinary research opportunities present in health systems to develop cancer control research programs in clinical settings with research units. The Cancer Research Network (CRN) was the result of this collaboration. Between 1999 and 2003, the CRN, in collaboration with the NCI, developed the management structure and processes and the data resources described in this monograph and began to use them to carry out three core research projects and a variety of other cancer control studies. Three papers in the monograph describe the CRN's efforts to establish a productive consortium (2), develop its data infrastructure (3), and evaluate its progress (4). The remaining papers in the monograph describe findings from the three core projects and some affiliated research projects. The first core study, DETECT, resolved complicated privacy and political concerns to determine in seven health systems what proportions of invasive breast and cervical cancers resulted from failure to screen, failure to detect an abnormality on screening, and failure to follow-up an abnormal screening test (5). Three papers in the monograph describe new findings from this study. Two papers examine issues that may contribute to late breast cancer diagnosis: refusals of follow-up care for suspicious findings (6) and missed clinical opportunities to detect breast cancer earlier (7). The third paper examines physicians' views of breast and cervical cancer guidelines and programs of their HMOs (8). Reforms of screening processes based on DETECT data began in the involved systems even before the results were published. The PROTECTS study examined the effectiveness of prophylactic mastectomy and screening in women at high risk of breast cancer or with unilateral breast cancer. The study assembled by far the largest cohort of women with breast cancer who had elected to undergo prophylactic mastectomy of the uninvolved breast and determined that the procedure reduced the rates of subsequent recurrence and new primary tumors using longitudinal, retrospective records and a case–control design (9). The results will affect the future delivery of this procedure. Papers in the monograph examine women's decision making about prophylactic mastectomy (10), complications of bilateral prophylactic mastectomy (11), and the effectiveness of clinical breast examination (12). A fourth paper used data from this project to address the extent to which race and ethnicity designations in the medical record compared with patient self-reports (13). The HIT study identified health system policies on smoking and surveyed physicians and patients to assess the extent to which the policies were understood, influenced care delivery and had an impact on smoking cessation. A paper in the monograph demonstrates that more than policy is required to have an impact (14). Physicians and health plan members need to be aware of those policies and they require an infrastructure to make an impact. A second monograph paper derived from the HIT study describes efforts to develop standard cost measures across HMOs (15). Other papers in this monograph are derived from other projects that arose as a result of CRN participation, and they underscore the research opportunities the network provides. Disparities in cancer survival by race, ethnicity, and income are a major concern. Two papers in the monograph using HMO administrative and tumor registry data suggest that disparities in breast (16) and colorectal cancer (17) care and survival exist even among HMO enrollees where financial access presumably is less of an issue. Another monograph paper explores possible reasons for the low enrollment of Asian American women in cancer clinical trials (18). The NIH Roadmap (19) highlights the importance of translating research findings into practice. The comprehensive automated data of the CRN's health systems facilitate studies of the diffusion of new findings into practice. Two papers in the monograph report on the response of patients (20) and of health care organizations (21) to the findings of the Women's Health Initiative's estrogen replacement therapy study (22). However in another monograph paper, automated data proved to be inadequate for distinguishing screening from diagnostic colorectal endoscopy exams (23). The extraordinary opportunities for research in these settings (1) led to refunding and expansion of the CRN through 2007. This monograph is more than simply a set of papers arising from a multisite research program. It addresses substantive and methodologic issues on screening, disparities, translation of research into practice, cancer care, risk reduction, and health services, as well as the expanding infrastructure that makes it possible to examine key research questions across multiple healthcare systems. We hope that the work of the CRN and of other ongoing HMO RN research will lead academic researchers to better appreciate the amazing resources present in integrated care systems and to reach out to collaborate with researchers in their research centers. Erin Aiello, MPH, and Chelsea Jenter, MPH, were instrumental in making this Monograph a reality. References (1) Vogt TM, Elston-LaFata J, Tolsma D, Greene S. The role of research in integrated healthcare systems: the HMO Research Network. Am J Manag Care  2004; 10: 643–8. Google Scholar (2) Wagner EH, Greene SM, Hart G, Field TS, Fletcher S, Geiger AM, et al. Building a research consortium of large health systems: the Cancer Research Network. J Natl Cancer Inst Monogr  2005; 35: 3–11. Google Scholar (3) Hornbrook MC, Hart G, Ellis JL, Bachman DJ, Ansell G, Greene SM, et al. Building a virtual cancer research organization. J Natl Cancer Inst Monogr  2005; 35: 12–25. Google Scholar (4) Greene SM, Hart G, Wagner EH. Measuring and improving performance in multicenter research consortia. J Natl Cancer Inst Monogr  2005; 35: 26–32. Google Scholar (5) Taplin SH, Ichikawa L, Yood MU, Manos MM, Geiger AM, Weinmann S, et al. Reason for late-stage breast cancer: absence of screening or detection, or breakdown in follow-up? J Natl Cancer Inst  2004; 96: 1518–27. Google Scholar (6) Weinmann S, Taplin SH, Gilbert J, Beverly RK, Geiger AM, Ulcickas Yood M, et al. Characteristics of women refusing follow-up for tests or symptoms suggestive of breast cancer. J Natl Cancer Inst Monogr  2005; 35: 33–8. Google Scholar (7) Mouchawar J, Taplin S, Ichikawa L, Barlow WE, Geiger AM, Weinmann S, et al. Late-stage breast cancer among women with recent negative screening mammography: do clinical encounters offer opportunity for earlier detection? J Natl Cancer Inst Monogr  2005; 35: 39–46. Google Scholar (8) Zapka JG, Puleo E, Taplin S, Solberg LI, Mouchawar J, Somkin C, et al. Breast and cervical cancer screening: clinicians' views on health plan guidelines and implementation efforts. J Natl Cancer Inst Monogr  2005; 35: 46–54. Google Scholar (9) Herrinton LJ, Barlow WE, Yu O, Geiger AM, Elmore JG, Barton MB, et al. Efficacy of prophylactic mastectomy in women with unilateral breast cancer: a cancer research network project. J Clin Oncol  2005; 23: 4275–86. Google Scholar (10) Nekhlyudov L, Bower M, Herrinton LJ, Altschuler A, Greene SM, Rolnick S, et al. Women's decision-making roles regarding contralateral prophylactic mastectomy. J Natl Cancer Inst Monogr  2005; 35: 55–60. Google Scholar (11) Barton MB, West CN, Liu I-LA, Harris EL, Rolnick SJ, Elmore JG, et al. Complications following bilateral prophylactic mastectomy. J Natl Cancer Inst Monogr  2005; 35: 61–6. Google Scholar (12) Fenton JJ, Barton MB, Geiger AM, Herrinton LJ, Rolnick SJ, Harris EL, et al. Screening clinical breast examination: how often does it miss lethal breast cancer? J Natl Cancer Inst Monogr  2005; 35: 67–71. Google Scholar (13) West CN, Geiger AM, Greene SM, Harris EL, Liu I-LA, Barton MB, et al. Race and ethnicity: comparing medical records to self-reports. J Natl Cancer Inst Monogr  2005; 35: 72–4. Google Scholar (14) Stevens VJ, Solberg LI, Quinn VP, Rigotti NA, Hollis JA, Smith KS, et al. Relationship between tobacco control policies and the delivery of smoking cessation services in nonprofit HMOs. J Natl Cancer Inst Monogr  2005; 35: 75–80. Google Scholar (15) Ritzwoller DP, Goodman MJ, Maciosek MV, Elston LaFata J, Meenan R, Hornbrook MC, Fishman PA. Creating standard cost measures across integrated health care delivery systems. J Natl Cancer Inst Monogr  2005; 35: 80–7. Google Scholar (16) Field TS, Buist DS, Doubeni C, Enger S, Fouayzi H, Hart G, et al. Disparities and survival among breast cancer patients. J Natl Cancer Inst Monogr  2005; 35: 88–95. Google Scholar (17) Rolnick S, Hensley Alford S, Kucera GP, Fortman K, Ulcickas Yood M, Jankowski M, Johnson CC. Racial and age differences in colon examination surveillance following a diagnosis of colorectal cancer. J Natl Cancer Inst Monogr  2005; 35: 96–101. Google Scholar (18) Nguyen TT, Somkin CP, Ma Y, Fung L-C, Nguyen T. Participation of Asian-American women in cancer treatment research: a pilot study. J Natl Cancer Inst Monogr  2005; 35: 102–5. Google Scholar (19) Zerhouni E. The NIH roadmap. Science  2003; 302: 63–72. Google Scholar (20) Wei F, Miglioretti DL, Connelly MT, Andrade SE, Newton KM, Hartsfield CL, et al. Changes in women's use of hormones after the Women's Health Initiative estrogen and progestin trial by race, education, and income. J Natl Cancer Inst Monogr  2005; 35: 106–12. Google Scholar (21) Hartsfield CL, Connelly MT, Newton KM, Andrade SE, Wei F, Buist DS. Health system responses to the Women's Health Initiative findings on estrogen and progestin: organizational response. J Natl Cancer Inst Monogr  2005; 35: 113–5. Google Scholar (22) Rossouw JE, Anderson GL, Prentice RL, LaCroix AZ, Kooperberg C, Stefanick ML, et al. Risks and benefits of estrogen plus progestin in healthy postmenopausal women: principal results from the Women's Health Initiative randomized controlled trial. JAMA  2002; 288: 321–3. Google Scholar (23) Haque R, Chiu V, Mehta KR, Geiger AM. An automated data algorithm to distinguish screening and diagnostic colorectal cancer endoscopy exams. J Natl Cancer Inst Monogr  2005; 35: 116–8. Google Scholar © The Author 2005. Published by Oxford University Press. All rights reserved. For Permissions, please e-mail: journals.permissions@oxfordjournals.org. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png JNCI Monographs Oxford University Press

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Publisher
Oxford University Press
Copyright
© The Author 2005. Published by Oxford University Press. All rights reserved. For Permissions, please e-mail: journals.permissions@oxfordjournals.org.
ISSN
1052-6773
eISSN
1745-6614
DOI
10.1093/jncimonographs/lgi031
pmid
16287879
Publisher site
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Abstract

In 1994, researchers from 10 integrated care system research centers formed the HMO Research Network (HMO RN), an organization designed to develop and implement collaborations across health care systems (1). We hoped that this organization would foster research to address important questions best answered by the collaborative involvement of multiple health systems and research centers. Four years later, a consortium of members of the network responded to a National Cancer Institute (NCI) request for applications that was designed to take advantage of the extraordinary research opportunities present in health systems to develop cancer control research programs in clinical settings with research units. The Cancer Research Network (CRN) was the result of this collaboration. Between 1999 and 2003, the CRN, in collaboration with the NCI, developed the management structure and processes and the data resources described in this monograph and began to use them to carry out three core research projects and a variety of other cancer control studies. Three papers in the monograph describe the CRN's efforts to establish a productive consortium (2), develop its data infrastructure (3), and evaluate its progress (4). The remaining papers in the monograph describe findings from the three core projects and some affiliated research projects. The first core study, DETECT, resolved complicated privacy and political concerns to determine in seven health systems what proportions of invasive breast and cervical cancers resulted from failure to screen, failure to detect an abnormality on screening, and failure to follow-up an abnormal screening test (5). Three papers in the monograph describe new findings from this study. Two papers examine issues that may contribute to late breast cancer diagnosis: refusals of follow-up care for suspicious findings (6) and missed clinical opportunities to detect breast cancer earlier (7). The third paper examines physicians' views of breast and cervical cancer guidelines and programs of their HMOs (8). Reforms of screening processes based on DETECT data began in the involved systems even before the results were published. The PROTECTS study examined the effectiveness of prophylactic mastectomy and screening in women at high risk of breast cancer or with unilateral breast cancer. The study assembled by far the largest cohort of women with breast cancer who had elected to undergo prophylactic mastectomy of the uninvolved breast and determined that the procedure reduced the rates of subsequent recurrence and new primary tumors using longitudinal, retrospective records and a case–control design (9). The results will affect the future delivery of this procedure. Papers in the monograph examine women's decision making about prophylactic mastectomy (10), complications of bilateral prophylactic mastectomy (11), and the effectiveness of clinical breast examination (12). A fourth paper used data from this project to address the extent to which race and ethnicity designations in the medical record compared with patient self-reports (13). The HIT study identified health system policies on smoking and surveyed physicians and patients to assess the extent to which the policies were understood, influenced care delivery and had an impact on smoking cessation. A paper in the monograph demonstrates that more than policy is required to have an impact (14). Physicians and health plan members need to be aware of those policies and they require an infrastructure to make an impact. A second monograph paper derived from the HIT study describes efforts to develop standard cost measures across HMOs (15). Other papers in this monograph are derived from other projects that arose as a result of CRN participation, and they underscore the research opportunities the network provides. Disparities in cancer survival by race, ethnicity, and income are a major concern. Two papers in the monograph using HMO administrative and tumor registry data suggest that disparities in breast (16) and colorectal cancer (17) care and survival exist even among HMO enrollees where financial access presumably is less of an issue. Another monograph paper explores possible reasons for the low enrollment of Asian American women in cancer clinical trials (18). The NIH Roadmap (19) highlights the importance of translating research findings into practice. The comprehensive automated data of the CRN's health systems facilitate studies of the diffusion of new findings into practice. Two papers in the monograph report on the response of patients (20) and of health care organizations (21) to the findings of the Women's Health Initiative's estrogen replacement therapy study (22). However in another monograph paper, automated data proved to be inadequate for distinguishing screening from diagnostic colorectal endoscopy exams (23). The extraordinary opportunities for research in these settings (1) led to refunding and expansion of the CRN through 2007. This monograph is more than simply a set of papers arising from a multisite research program. It addresses substantive and methodologic issues on screening, disparities, translation of research into practice, cancer care, risk reduction, and health services, as well as the expanding infrastructure that makes it possible to examine key research questions across multiple healthcare systems. We hope that the work of the CRN and of other ongoing HMO RN research will lead academic researchers to better appreciate the amazing resources present in integrated care systems and to reach out to collaborate with researchers in their research centers. Erin Aiello, MPH, and Chelsea Jenter, MPH, were instrumental in making this Monograph a reality. References (1) Vogt TM, Elston-LaFata J, Tolsma D, Greene S. The role of research in integrated healthcare systems: the HMO Research Network. Am J Manag Care  2004; 10: 643–8. Google Scholar (2) Wagner EH, Greene SM, Hart G, Field TS, Fletcher S, Geiger AM, et al. Building a research consortium of large health systems: the Cancer Research Network. J Natl Cancer Inst Monogr  2005; 35: 3–11. Google Scholar (3) Hornbrook MC, Hart G, Ellis JL, Bachman DJ, Ansell G, Greene SM, et al. Building a virtual cancer research organization. J Natl Cancer Inst Monogr  2005; 35: 12–25. Google Scholar (4) Greene SM, Hart G, Wagner EH. Measuring and improving performance in multicenter research consortia. J Natl Cancer Inst Monogr  2005; 35: 26–32. Google Scholar (5) Taplin SH, Ichikawa L, Yood MU, Manos MM, Geiger AM, Weinmann S, et al. Reason for late-stage breast cancer: absence of screening or detection, or breakdown in follow-up? J Natl Cancer Inst  2004; 96: 1518–27. Google Scholar (6) Weinmann S, Taplin SH, Gilbert J, Beverly RK, Geiger AM, Ulcickas Yood M, et al. Characteristics of women refusing follow-up for tests or symptoms suggestive of breast cancer. J Natl Cancer Inst Monogr  2005; 35: 33–8. Google Scholar (7) Mouchawar J, Taplin S, Ichikawa L, Barlow WE, Geiger AM, Weinmann S, et al. Late-stage breast cancer among women with recent negative screening mammography: do clinical encounters offer opportunity for earlier detection? J Natl Cancer Inst Monogr  2005; 35: 39–46. Google Scholar (8) Zapka JG, Puleo E, Taplin S, Solberg LI, Mouchawar J, Somkin C, et al. Breast and cervical cancer screening: clinicians' views on health plan guidelines and implementation efforts. J Natl Cancer Inst Monogr  2005; 35: 46–54. Google Scholar (9) Herrinton LJ, Barlow WE, Yu O, Geiger AM, Elmore JG, Barton MB, et al. Efficacy of prophylactic mastectomy in women with unilateral breast cancer: a cancer research network project. J Clin Oncol  2005; 23: 4275–86. Google Scholar (10) Nekhlyudov L, Bower M, Herrinton LJ, Altschuler A, Greene SM, Rolnick S, et al. Women's decision-making roles regarding contralateral prophylactic mastectomy. J Natl Cancer Inst Monogr  2005; 35: 55–60. Google Scholar (11) Barton MB, West CN, Liu I-LA, Harris EL, Rolnick SJ, Elmore JG, et al. Complications following bilateral prophylactic mastectomy. J Natl Cancer Inst Monogr  2005; 35: 61–6. Google Scholar (12) Fenton JJ, Barton MB, Geiger AM, Herrinton LJ, Rolnick SJ, Harris EL, et al. Screening clinical breast examination: how often does it miss lethal breast cancer? J Natl Cancer Inst Monogr  2005; 35: 67–71. Google Scholar (13) West CN, Geiger AM, Greene SM, Harris EL, Liu I-LA, Barton MB, et al. Race and ethnicity: comparing medical records to self-reports. J Natl Cancer Inst Monogr  2005; 35: 72–4. Google Scholar (14) Stevens VJ, Solberg LI, Quinn VP, Rigotti NA, Hollis JA, Smith KS, et al. Relationship between tobacco control policies and the delivery of smoking cessation services in nonprofit HMOs. J Natl Cancer Inst Monogr  2005; 35: 75–80. Google Scholar (15) Ritzwoller DP, Goodman MJ, Maciosek MV, Elston LaFata J, Meenan R, Hornbrook MC, Fishman PA. Creating standard cost measures across integrated health care delivery systems. J Natl Cancer Inst Monogr  2005; 35: 80–7. Google Scholar (16) Field TS, Buist DS, Doubeni C, Enger S, Fouayzi H, Hart G, et al. Disparities and survival among breast cancer patients. J Natl Cancer Inst Monogr  2005; 35: 88–95. Google Scholar (17) Rolnick S, Hensley Alford S, Kucera GP, Fortman K, Ulcickas Yood M, Jankowski M, Johnson CC. Racial and age differences in colon examination surveillance following a diagnosis of colorectal cancer. J Natl Cancer Inst Monogr  2005; 35: 96–101. Google Scholar (18) Nguyen TT, Somkin CP, Ma Y, Fung L-C, Nguyen T. Participation of Asian-American women in cancer treatment research: a pilot study. J Natl Cancer Inst Monogr  2005; 35: 102–5. Google Scholar (19) Zerhouni E. The NIH roadmap. Science  2003; 302: 63–72. Google Scholar (20) Wei F, Miglioretti DL, Connelly MT, Andrade SE, Newton KM, Hartsfield CL, et al. Changes in women's use of hormones after the Women's Health Initiative estrogen and progestin trial by race, education, and income. J Natl Cancer Inst Monogr  2005; 35: 106–12. Google Scholar (21) Hartsfield CL, Connelly MT, Newton KM, Andrade SE, Wei F, Buist DS. Health system responses to the Women's Health Initiative findings on estrogen and progestin: organizational response. J Natl Cancer Inst Monogr  2005; 35: 113–5. Google Scholar (22) Rossouw JE, Anderson GL, Prentice RL, LaCroix AZ, Kooperberg C, Stefanick ML, et al. Risks and benefits of estrogen plus progestin in healthy postmenopausal women: principal results from the Women's Health Initiative randomized controlled trial. JAMA  2002; 288: 321–3. Google Scholar (23) Haque R, Chiu V, Mehta KR, Geiger AM. An automated data algorithm to distinguish screening and diagnostic colorectal cancer endoscopy exams. J Natl Cancer Inst Monogr  2005; 35: 116–8. Google Scholar © The Author 2005. Published by Oxford University Press. All rights reserved. For Permissions, please e-mail: journals.permissions@oxfordjournals.org.

Journal

JNCI MonographsOxford University Press

Published: Nov 1, 2005

There are no references for this article.