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1 Background and Recommendations
Pages 9-64

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From page 9...
... Recognition of the importance of symptom control and other aspects of palliative care from diagnosis through the dying process has been growing, however, and has reached the national health care agenda through the efforts of prominent bodies such as the President's Cancer Panel, the Medicare Payment Advisory Commission, the Institute of Medicine (IOM) , and major health care foundations.
From page 10...
... high costs would be acceptable if patients and families were satisfied with the care provided for those with advanced disease, but few can count on being sate. In short, our society Is spending a great deal and not getting what dying cancer patients need.
From page 11...
... The need for symptom control unrelated to treatment generally increases as a person approaches death, but at least for some patients, it begins much earlier. Symptom control is never, however, a substitute for primary cancer care that is desired by a patient.
From page 12...
... The papers themselves should be consulted for many more suggestions of specific activities and actions to be considered. The titles and authors are as follows: · Chapter 2: Reliable, High-Quality, Efficient End-of-Life Care for Cancer Patients: Economic Issues and Barriers, Joanne Lynn and Ann O'Mara · Chapter 3: Quality of Life and Quality Indicators for End-of-Life Cancer Care: Hope for the Best, Yet Prepare for the Worst, foan M
From page 13...
... In fact, the cancer establishment has played a leading role in the area of pain management, using the cancer patient with pain as a model for other conditions and developing national guidelines and educational initiatives. Hospice care also developed around the needs of advanced cancer patients in close association with the cancer establishment.
From page 14...
... In recent years, more than 60 percent of patients who have enrolled in the Medicare hospice benefit have had cancer, and more than half of all dying cancer patients have used some hospice services (Hogan et al., 2000~. The creation of the Medicare benefit was a major step forward, but its strict .
From page 15...
... . Since most nursing home stays do not qualify for Medicare payment, patients in nursing homes are often eligible for hospice services, but administrative complications deter enrollment for a large proportion of them.
From page 16...
... Holland and Chertkov (Chapter 7) add that reimbursement for professional psychosocial care is poor to absent even in major cancer centers and is often excluded from medical and behavioral health contracts.
From page 20...
... With their focus on the psychosocial aspects of the dying process, they work not only with patients but with those around them in making decisions about treatment options, marshaling resources, helping families cope with terminal illness and death of a relative, and generally encouraging the best quality of life for all concerned. lust as nursing and medicine have begun to do, the social work profession has been examining its education process for preparing practitioners to care for dying patients and their families.
From page 21...
... Doctor-patient NCCN Practice Evidence, Pilot testing; modify for communication Guidelines: consensus, or end-of-life care breaking bad combination news (pending)
From page 22...
... combination NCCN Practice Evidence, Modify for end-of-life care; Guidelines: consensus, or pilot test ambulatory care combination (NCCN, 1999) Social problems: NCCN Guidelines Evidence, Modify for end-of-life care; practical or for Social Work consensus, or pilot test psychosocial Services: combination Ambulatory (NCCN, 1999)
From page 23...
... Literature Develop guidelines; pilot test NOTE: APA = American Psychiatric Association; APS = American Pain Society; AHCPR = Agency for Health Care Policy and Research; NCCN = National Comprehensive Cancer Network management. In addition to general pain management guidelines (the Agency for Healthcare Research and Quality fAHRQ]
From page 24...
... The NCPB report Ensuring Quality Cancer Care (IOM, 1999) outlined a vision for the development of "indicators" to cover the spectrum of cancer careincluding the dying process that could be used to hold health care providers, institutions, and health plans accountable for the quality of care given.
From page 25...
... Although the focus of research has been on resuscitation decisions, the most important decision for the majority of cancer patients is the one to stop active treatment, but there is little research that examines this decision. Beyond those mentioned, there is debate over which other domains are important in the care of the dying.
From page 26...
... Nursing homes increasingly are providing end-of-life care for frail and older Americans. In 1998, an estimated 10 percent of cancer patients died in a nursing home.
From page 27...
... Even when palliative care is wanted and needed, however, it may not be available. Hospice care may not be available in poor, inner-city areas, which are generally underserved for health care.
From page 28...
... NCI produces one publication, Advanced Cancer: Living Each Day (1998) , aimed at dying patients and booklets for some specific end-of-life concerns: Eating Hints for Cancer Patients ( 1998 )
From page 29...
... may not fully understand the information or may be overwhelmed by too much information. Physicians and other health care providers, even at major cancer centers, may not have access to information resources that would facilitate ntormlng their patients.
From page 30...
... Lack of Reliable Data on Quality of Life and Quality of Care at the End of Life There is sufficient information from recent studies to demonstrate that cancer patients are consistently undertreated for pain, are underdiagnosed for their psychological distress, and have significant economic barriers to getting palliative care and that health care professionals identify their lack of both knowledge and training, as well as ability to obtain effective services for their patients, as major barriers to providing adequate care.
From page 31...
... The feasibility of symptom control research has been demonstrated. Studies of the epidemiology of symptoms, behavioral research, health services research, and basic research, as well as clinical trials, have already produced benefits that have been translated into better care.
From page 32...
... Few of the common practices of caring for patients with advanced cancer have been subjected to careful randomized clinical trials, impeding the provision of evidence-based practice recommendations. Cleeland has laid out a research agenda for the most important symptoms in the disciplines of basic science, epidemiology, social-behavioral research, health services research, and clinical trials.
From page 33...
... Even thoroughly tested, effective measures to improve the quality of life of dying patients through symptom control have not been widely adopted; in contrast, the most marginal improvements in chemotherapy to extend life often at reduced quality diffuse remarkably quickly. Our desire to evade and avoid the events associated with death pervades society.
From page 34...
... . impairment - Conduct clinical trials of - Drugs used empirically for delirium (haloperidol)
From page 35...
... · Develop animal models · Explore common pathways for fatigue and other symptoms · Study relationship of terminal nausea to other symptoms of advanced disease · Determine mechanisms of terminal and treatmentinduced nausea · Develop animal model for cancer-related affective disturbances · Study mechanisms of c epresslon unique to cancer and its treatment and current treatment · Conduct clinical trials of opioids by different routes of at ministration · Conduct clinical trials of other agents (e.g., corticosteroids ) Conduct clinical trials of · Stimulant therapies · Current anticytokines · Selective serotonin receptor uptake inhibitors (SSRIs)
From page 36...
... Fortunately, there is progress to report. A constellation of factors has put palliative care on the agenda as a medical issue: the development of technology-intensive approaches for patients with advanced disease, advances in treatment for cancer patients and patients with AIDS, a large and aging elderly population, a growing population of patients with significant neurological and neurodegenerative diseases requiring continuous care, and limitations in health care resources.
From page 37...
... . SUPPORT and HELP were funded solely by the Robert Wood Johnson Foundation at more than $29 million, the largest project ever funded by RWTF (Phillips et al., 2000~.
From page 38...
... 38 IMPROVING PALLIATIVE CARE FOR CANCER of the studies, beyond this single finding, are hinted at by the 100 or so journal articles that have probed SUPPORT data (Phillips et al., 20001. The failure of the planned interventions spurred the interested community to try to understand what went wrong and what could be done differ
From page 39...
... BACKGROUND AND RECOMMENDATIONS 39 entry. This led RWJF to begin its Last Acts campaign, an effort to improve end-of-life care at the grassroots level that now has more than 400 members (Schroeder, 1999)
From page 40...
... The 1999 National Cancer Policy Board report Ensuring Quality Cancer Care (IOM, 1999) has already been mentioned.
From page 42...
... Those who spoke about palliative and end-of-life care reinforced earlier findings (PCP, 1998~: Speakers emphasized the need for a compassionate and humane system of care for cancer patients at the end of life, including improved financing of hospice care, expanding the availability of palliative care approaches from hospice programs to cancer centers (including offering palliative care as an option in all clinical trials) , establishing a focal point for palliative care research at the NCI, improving health care professional education about palliative care, and fostering more honest health professional and public dialogue about dying.
From page 43...
... In 1998, it took two important steps. First, ASCO published a position statement on cancer care during the last phase of life (ASCO, 1998)
From page 44...
... . For the long term, ASCO has placed high priority on developing its program called "Optimizing Cancer Care: The Importance of Symptom Management." The curriculum consists of 32 modules covering specific symptoms and symptom control issues (e.g., ascites, breaking bad news, depression, lymphedema)
From page 45...
... report and to the widely publicized SUPPORT findings with an initiative in symptom control and palliative care at a meeting in November 1997. This was by no means NIH's first recognition of research needs in palliative care.
From page 48...
... , which would generally be understood as treatments aimed directly at the cancers themselves, not agents for palliative care. NCI currently designates 37 centers as Comprehensive Cancer Centers (as of December 2000~.
From page 49...
... . · any and all aspects of cancer pain research, including mechanism, prevention, therapy, measurement tools, and so forth; · hospice, defined as research dealing with formally organized supportive care of terminally ill patients either at home or in an institution; and · "other palliative care," including any supportive care (e.g., psychological counseling, relief of nausea, or other symptom management)
From page 50...
... programs that can be adopted by other cancer centers and hospitals. Activities should include, but not be limited to, the following: · ford testing and evaluation of new and existing practice guidelines for palliative and end-of-life care; · pilot testing "quality indicators" for assessing end~-of-life care at the level of the patient and the institution; trials; · incorporating the best palliative care into NCI-sponsored clinical · innovating in the delivery of palliative and end-of-life care, including colIaboration with local hospice organizations; · disseminating infor~nation about how to improve end-of-life care to other cancer centers and hospitals through ~ variety of media; · uncovering the deter~ninants of disparities in access to care by minority populations that should be served by the center undo developing specific programs and initiatives to increase access; these might include educational activities for health care providers and the community, setting up outreach programs, and so forth; · providing clinical and research training fellowships in medical and surgical oncology in end-of-life care for adult and pediatric patients; · creating faculty development programs in oncology, nursing, undo social work; and
From page 51...
... Recommendation 5: Organizations that provide infor~nation about cancer treatment (NCI, the American Cancer Society, and other patient-oriented organizations [e.g., d~isease-specific groups] ; health insurers; undo phar~naceutical companiesJ should revise their inventories of patient-oriented material, as appropriate, to provide comprehensive, accurate infor~nation about palliative care throughout the course of disease.
From page 52...
... These recommendations include · developing ~ core set of cancer care quality measures; · increasing public undo private support for cancer registries; · supporting research and demonstration projects to identify new mechanisms to organize and finance the collection of data for cancer care quality studies; · supporting the development of technologies, including computerbased patient record systems and intranet-based communication systems, to improve the availability, quality, and timeliness of clinical data relevant to assessing quality of cancer care; · expanding support for training in health services research and other disciplines needed to measure quality of care; · increasing support for health services research aimed toward improved quality of cancer care measures; · developing models for linkage studies and the release of confidential data for research purposes that protect the confidentiality and privacy of health care infor~nation; and · funding demonstration projects to assess the impact of quality monitoring programs within health care systems. Research on palliative care for cancer patients has had a low priority at NCI, and as a result, few researchers have been attracted to the field and very few relevant studies have been funded over the past decades.
From page 53...
... Recommendation 10: NCI should review the membership of its advisory bodies to ensure representation of experts in cancer pain, symptom management, and palliative care. 2In 1999, NCI initiated State of the Science Meetings focused on specific types of cancer "to bring together the Nation's leading multidisciplinary experts, to identify the important research questions for a given disease and help define the scientific research agenda that will assist us in addressing those questions." REFERENCES Agency for Healthcare Research and Quality (AHRQ)
From page 54...
... 1999. Ensuring Quality Cancer Care, Hewitt M, Simone JV, eds.
From page 55...
... APPENDIX lA TABLE lA-1 NCI Funding for Palliative Care Research: Specific Projects, Fiscal Year 1999 Total $ Relevant to Project $ Percenta Palliative Care Project Titleb 603,532 100 603,532 Inhibition of Postoperative Gynecological Adhesions 364,549 100 364,549 Intelligent Knowledge Base for Cancer Pain Treatment 367,610 100 367,610 Diana2 Computer-Based Teaching of Elder Care 153,918 100 153,918 Palliative Training for Caregivers of Cancer Patients 133,702 100 133,702 Patterns Care for Cancer Patients at End of Life 103,382 100 103,382 Home Based Moderate Exercise for Breast Cancer Patients 117,792 100 117,792 Stress of Cancer Caregiving Analysis and Intervention 602,537 100 602,537 Family Home Care for Cancer A Community Based Model 70,464 100 70,464 Clinical Management of Cancer Pain in US Nursing Homes 500,685 100 500,685 Pain Measurement in Bone Marrow Transplantation 162,671 100 162,671 Method for the Analysis of Pain Clinical Trials continued on next page 55
From page 56...
... 56 TABLE lA-1 Continued IMPROVING PALLIATIVE CARE FOR CANCER Total $ Relevant to Project $ Percenta Palliative Care Project Titleb 413,030 100 413,030 Laboratory Studies of Pain Control Methods 292,011 100 292,011 Cost Effectiveness of Lung Cancer Chemotherapy 360,637 100 360,637 Comparison of Psychosocial Intervention in Breast Cancer 498,233 100 498,233 Self Care Intervention to Control Cancer Pain 540,262 100 540,262 Breast Cancer Preparing for Survivorship 175,615 100 175,615 Recycling of Urea Nitrogen in Cancer Cachexia 203,436 100 203,436 Adjustment to Breast Cancer 248,889 100 248,889 Clinical Investigations in Hodgkin's Disease 588,097 100 588,097 Cancer Pain and Its Management 1,205,625 100 1,205,625 Maximizing the Therapeutic Index of Childhood ALL 1,778,647 100 1,778,647 CCSP in Head and Neck Cancer Rehabilitation 8,747 100 8,747 Feasibility of Physioacoustic Therapy in Cancer Care 405,116 100 405,116 Pain and the Defense Response 79,000 100 79,000 Home Care Training for Younger Breast Cancer Patients 358,290 100 358,290 A Simulator to Teach Therapeutic Communication Skills 412,812 100 412,812 Facilitating Positive Adaptation to Breast Cancer 416,067 100 416,067 Enhancing Recovery from Blood and Marrow Transplantation 451,385 100 451,385 Computerized Pain Report and Nursing Pain Consult Protocol 350,015 100 350,015 Item Banking and Cat for Quality of Life Outcomes 50,000 100 50,000 Menopausal Symptom Relief for Women with Breast Cancer 100,000 100 100,000 Exercise and Quality of Life in Women with Breast Cancer 99,975 100 99,975 Self Advocacy and Empowerment for Cancer Patients 100,000 100 100,000 Apoptosis Inhibitor for Alopecia Due to Cancer Therapy 99,805 100 99,805 Skin Patches for AIDS Patients 12,405 100 12,405 CCG Nursing Workshop Challenges in CCG Nursing 74,918 100 74,918 Stress Reduction for Women with Breast Cancer
From page 57...
... BACKGROUND AND RECOMMENDATIONS TABLE lA-1 Continued 57 Total $ Relevant to Project $ Percenta Palliative Care Project Titleb 347,423 100 347,423 Gender Differences in Opioid Analgesia and Side Effects 363,294 100 363,294 Exercise An Intervention for Fatigue in Cancer Patients 280,410 100 280,410 Cognitive Behavioral Aspects of Cancer Related Fatigue 404,999 100 404,999 Computerized Symptom Report Consult for Cancer Patients 328,624 100 328,624 Endothelin 1 Induced Pain and Metastatic Prostate Cancer 270,936 100 270,936 A Caregiver Intervention to Improve Hospice Outcomes 1,999,999 100 1,999,999 Center for Psycho-oncology Research 249,986 30 74,996 Longitudinal Quality of Life After Marrow Transplant 1,645,030 30 493,509 Epithelial Ovarian Cancer Program Project 2,441,974 30 732,592 Fluorescence Spectroscopy for Cervical Neoplasia 10,000 25 2,500 HIV, Leukemia, and Opportunistic Cancers 584,213 20 116,843 New Approaches to Brain Tumor Therapy CNS Consortium 98,456 20 19,691 New Approaches to Brain Tumor Therapy CNS Consortium 290,809 20 58,162 Synthetic Studies on Tumor Promoters and Inhibitors 14,883 20 2,977 Technical Requirements for Image Guided Spine Procedures 1,578,050 15 236,708 National Black Leadership Initiative on Cancer 250,641 15 37,596 Quality of Life of Gynecologic Cancer Survivors 284,633 15 42,695 Prophylactic Mastectomy in Hereditary Breast Cancer 270,273 5 13,514 Depression, HPA Function and Smoking Abstinence in Women TOTAL $18,331,326 NOTE: ALL = acute lymphocytic leukemia; CCG = Cancer Center Grant; CCSP = Cancer Control Science Program; CNS = central nervous system; HPA hypothalamic-pituitaryadrenal. aNCI estimate of percent of total relevant to palliative care bGrant numbers, principal investigators, and specific institutions have not been listed in this table.
From page 58...
... 58 IMPROVING PALLIATIVE CARE FOR CANCER TABLE 1A-2 NCI Funding for Palliative Care Research: Institutional Grants, Fiscal Year 1999 Total $ Relevant to Project $ Percenta Palliative Care Project Titleb 1,427,579 21.20 302,647 Great Lakes Regional Center for AIDS Research 1,682,639 21.20 356,719 Robert H Lurie Cancer Center 1,451,421 18.02 261,546 Cancer Center and Research Institute 554,090 10.63 58,900 University of Texas MD Anderson CCOP Research Base 781,064 10.37 80,996 Cancer Center Support Grant (CCSG) 2,018,050 10.00 201,805 SPORE in Breast Cancer 2,449,134 10.00 244,913 Bay Area Breast Cancer Translational Research Program 947,107 10.00 94,711 Cooperative Core Lab and Clinical Nutrition Research Unit 2,671,424 10.00 267,142 SPORE in Breast Cancer 409,734 8.23 33,721 Comprehensive Cancer Center Wake Forest University Research Base Grant 1,182,855 6.11 72,272 ECOG CCOP Research Base 271,255 6.07 16,465 Scottsdale Community Clinical Oncology Program 209,774 6.07 12,733 San Juan Minority-Based Community Oncology Program 212,744 6.07 12,914 Cedar Rapids Oncology Project 199,707 6.07 12,122 Geisinger Clinical Oncology Program 262,463 6.07 15,932 Illinois Oncology Research Association CCOP 252,539 6.06 15,304 CCOP 218,728 6.06 13,255 Oklahoma CCOP 881,850 6.06 53,440 Metro Minnesota CCOP 359,450 6.06 21,783 Kalamazoo CCOP 481,448 6.06 29,176 Northern New Jersey Community Oncology Program 108,209 6.05 6,547 University of Michigan CCOP Research Base 455,553 6.05 27,561 CCOP Colorado Cancer Research Program 269,121 6.05 16,282 Mainline Health CCOP 350,001 6.05 21,175 Toledo CCOP 424,715 6.05 25,695 Marshfield CCOP 483,525 6.05 29,253 Duluth CCOP 563,042 6.05 34,064 Carle Cancer Center CCOP 397,585 6.05 24,054 Meritcare Hospital CCOP 402,567 6.05 24,355 Sioux Community Cancer Consortium 359,785 6.04 21,731 Missouri Valley Cancer Consortium CCOP 399,670 6.04 24,140 Ann Arbor Regional CCOP 393,221 6.04 23,751 Ochsner CCOP 335,086 6.04 20,239 Iowa Oncology Research Association 505,639 6.00 30,338 Clinical Oncology Program 350,433 6.00 21,026 Kansas City CCOP
From page 59...
... BACKGROUND AND RECOMMENDATIONS TABLE 1A-2 Continued 59 Total $ Relevant to Project $ Percenta Palliative Care Project Titleb 273,234 6.00 16,394 University of Illinois Minority Based CCOP 445,098 6.00 26,706 Scott and White CCOP 434,322 6.00 26,059 Greenville, South Carolina CCOP 150,185 6.00 9,011 Gynecologic Oncology Group 296,456 6.00 17,787 Montana Cancer Consortium 185,244 6.00 11,115 Santa Rosa Memorial Hospital Regional CCOP 361,602 6.00 21,696 Hawaii Minority Based CCOP 301,593 6.00 18,096 South Texas Pediatric Minority Based CCOP 184,797 6.00 11,088 Minority Based Clinical Oncology Program 1,035,721 6.00 62,143 Southeast Cancer Control Consortium Inc. 500,180 6.00 30,011 Central Illinois CCOP 451,849 6.00 27,111 Mount Sinai CCOP 304,404 6.00 18,264 Tumor Institute CCOP 847,078 6.00 50,825 CCOP Research Base 165,969 6.00 9,958 CCSG Research Base for CCOP 501,148 6.00 30,069 Pediatric Oncology Group as a CCOP Research Base 510,286 6.00 30,617 Community Clinical Oncology Program 460,201 6.00 27,612 Southern Nevada Cancer Research Foundation CCOP 550,206 6.00 33,012 Northwest CCOP 761,255 6.00 45,675 North Shore CCOP 293,899 6.00 17,634 Greater Phoenix CCOP 462,893 6.00 27,774 Columbus CCOP 286,396 6.00 17,184 CCOP 266,547 6.00 15,993 Florida Pediatric CCOP 551,590 6.00 33,095 Upstate Carolina CCOP 3,877,581 6.00 232,655 CCOP Biostatistical Center 405,949 6.00 24,357 Louisiana State University Medical Center Minority-Based CCOP 368,614 6.00 22,117 Virginia Commonwealth University Minority-Based CCOP 1,134,032 6.00 68,042 Cancer and Leukemia Group B CCOP Research Base 11,242,692 6.00 674,562 Southwest Oncology Group CCOP Research Base 519,100 6.00 31,146 CCOP Research Base 1,568,634 6.00 94,118 CCOP 9,772,324 6.00 586,339 CCOP 240,240 6.00 14,414 Baptist Cancer Institute CCOP 406,637 6.00 24,398 Ozarks Regional CCOP 481,158 6.00 28,869 Atlanta Regional CCOP 553,267 6.00 33,196 Christiana Care CCOP continued on next page
From page 60...
... 60 TABLE 1A-2 Continued IMPROVING PALLIATIVE CARE FOR CANCER Total $ Relevant to Project $ Percenta Palliative Care Project Titleb 425,939 6.00 25,556 Syracuse Hematology-Oncology CCOP 509,387 6.00 30,563 Columbia River Oncology Program 260,360 6.00 15,622 St Louis/Cape Girardeau CCOP 187,892 6.00 11,274 Green Mountain Oncology Group 400,043 6.00 24,003 Dayton Clinical Oncology Program 3,660,649 5.71 209,023 CCSG 6,026,463 4.63 279,025 Cancer Center Support (Core) Grant 6,756,815 3.34 225,678 Cancer Center Support 3,092,697 3.32 102,678 Cancer Center Core Support Grant 1,256,873 2.84 35,695 Cancer Center Support Grant 854,004 2.23 19,044 Cancer Center of Wake Forest University 5,818,218 1.37 79,710 CCSG 3,194,572 0.60 19,167 Cancer Center 2,056,974 0.44 9,051 CCSG 2,551,080 0.43 10,970 CCSG 2,220,205 0.41 9,103 Yale Comprehensive Cancer Center 4,876,435 0.30 14,629 Regional Oncology Research Center 3,510,542 0.21 7,372 CCSG 202,113 0.11 222 Genetic Markers for Therapy of Colon Cancer 2,640,213 0.11 2,904 ECOG Statistical Center Data Management Office 2,329,568 0.11 2,563 ECOG Statistical Office 6,944,062 0.11 7,638 ECOG Operations Office 154,596 0.11 170 ECOG Institution Grant 181,018 0.11 199 ECOG 366,391 0.11 403 ECOG 281,735 0.11 310 ECOG 234,810 0.11 258 ECOG 446,441 0.11 491 ECOG 547,877 0.11 603 ECOG Wisconsin Studies 393,987 0.11 433 ECOG Clinical Trials 286,855 0.11 316 ECOG 391,656 0.11 431 ECOG 170,319 0.11 187 ECOG 335,704 0.11 369 ECOG Studies 206,311 0.11 227 ECOG 426,499 0.11 469 ECOG 345,144 0.11 380 ECOG 742,780 0.11 817 ECOG Chair's Office 146,456 0.11 161 ECOG 3,001,469 0.05 1,501 University of Michigan Cancer Center 2,865,494 0.02 573 American College of Surgeons Oncology Trials Group
From page 61...
... BACKGROUND AND RECOMMENDATIONS TABLE 1A-2 Continued 61 Total $ Relevant to Project $ Percenta Palliative Care Project Titleb 824,877 0.02 165 Quality Assurance Review Center (QARC) 401,529 0.02 80 EORTC Data Center 735,000 0.02 147 Radiological Physics Center 2,803,329 0.02 561 CCSG TOTAL 6,I48,59I NOTE: CCOP = Community Clinical Oncology Program; CCSG = Cancer Center Support Grant; ECOG = Eastern Cooperative Oncology Group; EORTC = European Organization for Research and Treatment of Cancer; SPORE = Specialized Program of Research Excellence.
From page 62...
... 1. Enhance Key Elements of the Data System Infrastructure Recommendation 1: Develop ~ core set of cancer care quality measures.
From page 63...
... Recommendation 4: Federal research agencies (e.g., NCI, CD C, AHRQ, HCFAJ should support research and demonstration projects to identify new mechanisms to organize and finance the collection of data for cancer care quality studies. Current data systems tend to be hospital based, while cancer care is shifting to outpatient settings.
From page 64...
... Recommendation 9: Federal research agencies (e.g., NCI, AHRQ, HCFA, VAJ should fund demonstration projects to assess the application of quality monitoring programs within healthcare systems undo the impact of data-driven changes in the delivery of services on the quality of health care. Findings from the demonstrations should be disseminated widely to consumers, payers, purchasers, and cancer care providers.


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