National Cancer Policy Board – författare

Shortly after 1998, leading members of Georgia''s government, medical community, and public-spirited citizenry began considering ways in which some of Georgia''s almost $5 billion, 25-year settlement from the tobacco industry''s Master Settlement Agreement with the 50 states could be used to benefit Georgia residents. Given tobacco''s role in causing cancer, they decided to create an entity and program with the mission of making Georgia a national leader in cancer prevention, treatment, and research. This new entity—called the Georgia Cancer Coalition, Inc. (GCC)—and the state of Georgia subsequently began implementing a far-reaching state cancer initiative that includes five strategic goals: (1) preventing cancer and detecting existing cancers earlier; (2) improving access to quality care for all state residents with cancer; (3) saving more lives in the future; (4) training future cancer researchers and caregivers; and (5) turning the eradication of cancer into economic growth for Georgia.

Assessing the Quality of Cancer Care identifies a set of measures that could be used to gauge Georgia''s progress in improving the quality of its cancer services and in reducing cancer-related morbidity and mortality.

The outlook for women with breast cancer has improved in recent years.Due to the combination of improved treatments and the benefits of mammographyscreening, breast cancer mortality has decreased steadily since1989. Yet breast cancer remains a major problem, second only to lungcancer as a leading cause of death from cancer for women. To date, nomeans to prevent breast cancer has been discovered and experience hasshown that treatments are most effective when a cancer is detected early,before it has spread to other tissues. These two facts suggest that the mosteffective way to continue reducing the death toll from breast cancer isimproved early detection and diagnosis.

Building on the 2001 report Mammography and Beyond, this new booknot only examines ways to improve implementation and use of new andcurrent breast cancer detection technologies but also evaluates the need todevelop tools that identify women who would benefit most from earlydetection screening. Saving Women''s Lives: Strategies for Improving BreastCancer Detection and Diagnosis encourages more research that integratesthe development, validation, and analysis of the types of technologies inclinical practice that promote improved risk identification techniques. Inthis way, methods and technologies that improve detection and diagnosiscan be more effectively developed and implemented.

This report is the summary of a symposium presented by the American Cancer Society (ACS) and the Institute of Medicine (IOM) to further disseminate the conclusions and recommendations of Fulfilling the Potential of Cancer Prevention and Early Detection. This report discusses issues including better support for tobacco and obesity campaigns; coordination of programs; joint approaches with the food industry; the need for an explicit consensus national tobacco and obesity strategy; viewpoints of payers; changing Medicare''s approach to prevention; private sector payment programs; improvements in applied research and dissemination of results; better science in programs; problems in modifying medical practice; and conflict between individual choice and policy options.

In Meeting Psychosocial Needs of Women with Breast Cancer, the National Cancer PolicyBoard of the Institute of Medicine examines the psychosocial consequences of thecancer experience. The book focuses specifically on breast cancer in women becausethis group has the largest survivor population (over 2 million) and this disease is themost extensively studied cancer from the standpoint of psychosocial effects. The bookcharacterizes the psychosocial consequences of a diagnosis of breast cancer, describespsychosocial services and how they are delivered, and evaluates their effectiveness. Itassesses the status of professional education and training and applied clinical andhealth services research and proposes policies to improve the quality of care andquality of life for women with breast cancer and their families. Because cancer of thebreast is likely a good model for cancer at other sites, recommendations for this cancershould be applicable to the psychosocial care provided generally to individualswith cancer. For breast cancer, and indeed probably for any cancer, the report findsthat psychosocial services can provide significant benefits in quality of life and successin coping with serious and life-threatening disease for patients and their families.

As a society, we have made amazing gains in being able to detect and treat cancer. Even so, about half the people who are told by their doctors that they have cancer will die within a few years. This means that every year about one million people find out that they have cancer and are treated, and about one-half million people die of cancer nationwide. So far, most cancer research and treatment has focused on trying to cure cancer. There hasn''t been much attention paid to other important issues, such as pain control and taking care of other troubling symptoms. Now more and more people are aware that there are cancer care needs beyond just trying to cure it. Attention is now being paid to helping people with cancer cope better with the problems that may arise when people are being treated or as they approach death.

The more than two-thirds of childhood cancer survivors who experience late effects—that is, complications, disabilities, or adverse outcomes—as a result of their disease, its treatment, or both, are the focus of this report which outlines a comprehensive policy agenda that links improved health care delivery and follow-up, investments in education and training for health care providers, and expanded research to improve the long-term outlook for this growing population now exceeding 270,000 Americans.

National expenditures for medical care in the months and days preceding death are enormous. But we do not know whether that money is buying good quality care or optimizing the quality of life of those dying, or whether the situation is getting better or worse over time. The information that exists "describing death" at a national level — though some of it is very informative — is fragmentary. This report recommends ways to fill the information gaps by better use of existing nationally-representative data, and through some new measures, in particular, a new, ongoing National Mortality Followback Survey. The aim is to allow us to benchmark where we are today as a society, and what goals we can set to minimize pain and suffering and maximize the quality of life of all of us who will die in the years to come.

Cancer ranks second only to heart disease as a leading cause of death in the United States, making it a tremendous burden in years of life lost, patient suffering, and economic costs. Fulfilling the Potential for Cancer Prevention and Early Detection reviews the proof that we can dramatically reduce cancer rates. The National Cancer Policy Board, part of the Institute of Medicine, outlines a national strategy to realize the promise of cancer prevention and early detection, including specific and wide-ranging recommendations. Offering a wealth of information and directly addressing major controversies, the book includes:

This in-depth volume will be of interest to policy analysts, cancer and public health specialists, health care administrators and providers, researchers, insurers, medical journalists, and patient advocates.

Interpreting the Volume-Outcome Relationship in the Context of Cancer Care is a summary of a workshop held on May 11, 2000, which brought together experts to review evidence of the relationship between volume of services and health-related outcomes for cancer and other conditions, discuss methodological issues related to the interpretation of the association between volume and outcome, assess the applicability of volume as an indicator of quality of care; and identify research needed to better understand the volume—outcome relationship and its application to quality improvement.

It goes on to recommend public- and private-sector actions that would lead to the development of more effective palliative interventions; better information about currently used interventions; and greater knowledge about, and access to, palliative care for all those with cancer who would benefit from it.

It is innately human to comfort and provide care to those suffering from cancer, particularly those close to death. Yet what seems self-evident at an individual, personal level has, by and large, not guided policy at the level of institutions in this country. There is no argument that palliative care should be integrated into cancer care from diagnosis to death. But significant barriers-attitudinal, behavioral, economic, educational, and legal-still limit access to care for a large proportion of those dying from cancer, and in spite of tremendous scientific opportunities for medical progress against all the major symptoms associated with cancer and cancer death, public research institutions have not responded. In accepting a single-minded focus on research toward cure, we have inadvertently devalued the critical need to care for and support patients with advanced disease, and their families.

This report builds on and takes forward an agenda set out by the 1997 IOM report Approaching Death: Improving Care at the End of Life, which came at a time when leaders in palliative care and related fields had already begun to air issues surrounding care of the dying. That report identified significant gaps in knowledge about care at the end of life and the need for serious attention from biomedical, social science, and health services researchers. Most importantly, it recognized that the impediments to good care could be identified and potentially remedied. The report itself catalyzed further public involvement in specific initiatives-mostly pilot and demonstration projects and programs funded by the nonprofit foundation community, which are now coming to fruition.

One of the barriers to improving the quality of cancer care in the United States is the inadequacy of data systems. Out-of-date or incomplete information about the performance of doctors, hospitals, health plans, and public agencies makes it hard to gauge the quality of care. Augmenting today''s data systems could start to fill the gap.

This report examines the strengths and weaknesses of current systems and makes recommendations for enhancing data systems to improve the quality of cancer care. The board''s recommendations fall into three key areas:

We all want to believe that when people get cancer, they will receive medical care of the highest quality. Even as new scientific breakthroughs are announced, though, many cancer patients may be getting the wrong care, too little care, or too much care, in the form of unnecessary procedures.

How close is American medicine to the ideal of quality cancer care for every person with cancer? Ensuring Quality Cancer Care provides a comprehensive picture of how cancer care is delivered in our nation, from early detection to end-of-life issues. The National Cancer Policy Board defines quality care and recommends how to monitor, measure, and extend quality care to all people with cancer. Approaches to accountability in health care are reviewed.

What keeps people from getting care? The book explains how lack of medical coverage, social and economic status, patient beliefs, physician decision-making, and other factors can stand between the patient and the best possible care. The board explores how cancer care is shaped by the current focus on evidence-based medicine, the widespread adoption of managed care, where services are provided, and who provides care. Specific shortfalls in the care of breast and prostate cancer are identified. A status report on health services research is included.

Ensuring Quality Cancer Care offers wide-ranging data and information in clear context. As the baby boomers approach the years when most cancer occurs, this timely volume will be of special interest to health policy makers, public and private healthcare purchasers, medical professionals, patient advocates, researchers, and people with cancer.

In this report The Breast Cancer Research Foundation (BCRF) and the Institute of Medicine (IOM) present a one-day symposium that was held at the IOM to further disseminate the conclusions and recommendations of the joint IOM and National Research Council report, Saving Women''s Lives: Strategies for Improving Breast Cancer Detection and Diagnosis. The committee assembled for this event was asked to share insights and consider ways in which the objectives of the report could be achieved from the standpoint of what women need to know, the best models of screening programs, manpower, risk stratification, basic research, and payment. This symposium seeks to provide continuing food for thought and ideas for actions in support of breast cancer detection and diagnosis and saving women''s lives.

The successes that have been achieved in treating childhood cancers stand as beacons against the less dramatic improvements for adults with cancer. Progress began to accelerate in the 1960s and 1970s, as treatment regimens were built up, primarily by building combinations of chemotherapeutic drugs. However the near absence of research in pediatric cancer drug discovery threatens to halt the progress in childhood cancer treatment achieved during the past four decades. Making Better Drugs for Children with Cancer identifies the major issues to be addressed in developing new agents for childhood cancers, the gaps in research and development, and the steps that have been suggested to move the process forward. This report also makes a new proposal to capitalize on today''s science to bring new treatments to children''s cancers.

X-ray mammography screening is the current mainstay for early breast cancer detection. It has been proven to detect breast cancer at an earlier stage and to reduce the number of women dying from the disease. However, it has a number of limitations.

These current limitations in early breast cancer detection technology are driving a surge of new technological developments, from modifications of x-ray mammography such as computer programs that can indicate suspicious areas, to newer methods of detection such as magnetic resonance imaging (MRI) or biochemical tests on breast fluids. To explore the merits and drawbacks of these new breast cancer detection techniques, the Institute of Medicine of the National Academy of Sciences convened a committee of experts. During its year of operation, the committee examined the peer-reviewed literature, consulted with other experts in the field, and held two public workshops.

In addition to identifying promising new technologies for early detection, the committee explored potential barriers that might prevent the development of new detection methods and their common usage. Such barriers could include lack of funding from agencies that support research and lack of investment in the commercial sector; complicated, inconsistent, or unpredictable federal regulations; inadequate insurance reimbursement; and limited access to or unacceptability of breast cancer detection technology for women and their doctors. Based on the findings of their study, the committee prepared a report entitled Mammography and Beyond: Developing Technology for Early Detection of Breast Cancer, which was published in the spring of 2001. This is a non-technical summary of that report.

In November 1999, the Institute of Medicine, in consultation with the Commission on Life Sciences, the Commission on Physical Sciences, Mathematics, and Applications, and the Board on Science, Technology and Economic Policy launched a one year study on technologies for early detection of breast cancer. The committee was asked to examine technologies under development for early breast cancer detection, and to scrutinize the process of medical technology development, adoption, and dissemination. The committee is gathering information on these topics for its report in a number of ways, including two public workshops that bring in outside expertise. The first workshop on "Developing Technologies for Early Breast Cancer Detection" was held in Washington DC in February 2000. The content of the presentations at the workshop is summarized here. A second workshop, which will focus on the process of technology development and adoption, will be held in Washington, DC on June 19-20. A formal report on these topics, including conclusions and recommendations, will be prepared by the committee upon completion of the one-year study.

The more than two-thirds of childhood cancer survivors who experience late effects—that is, complications, disabilities, or adverse outcomes—as a result of their disease, its treatment, or both, are the focus of this report which outlines a comprehensive policy agenda that links improved health care delivery and follow-up, investments in education and training for health care providers, and expanded research to improve the long-term outlook for this growing population now exceeding 270,000 Americans.

Cancer ranks second only to heart disease as a leading cause of death in the United States, making it a tremendous burden in years of life lost, patient suffering, and economic costs. Fulfilling the Potential for Cancer Prevention and Early Detection reviews the proof that we can dramatically reduce cancer rates. The National Cancer Policy Board, part of the Institute of Medicine, outlines a national strategy to realize the promise of cancer prevention and early detection, including specific and wide-ranging recommendations. Offering a wealth of information and directly addressing major controversies, the book includes:

This in-depth volume will be of interest to policy analysts, cancer and public health specialists, health care administrators and providers, researchers, insurers, medical journalists, and patient advocates.

Large-Scale Biomedical Science: Exploring Strategies for Research looks at the role of these new large-scale projects in the biomedical sciences. Though written by the National Academies'' Cancer Policy Board, this book addresses implications of large-scale science extending far beyond cancer research. It also identifies obstacles to the implementation of these projects, and makes recommendations to improve the process.The ultimate goal of biomedical research is to advance knowledge and provide useful innovations to society. Determining the best and most efficient method for accomplishing that goal, however, is a continuing and evolving challenge. The recommendations presented in Large-Scale Biomedical Science are intended to facilitate a more open, inclusive, and accountable approach to large-scale biomedical research, which in turn will maximize progress in understanding and controlling human disease.

National expenditures for medical care in the months and days preceding death are enormous. But we do not know whether that money is buying good quality care or optimizing the quality of life of those dying, or whether the situation is getting better or worse over time. The information that exists "describing death" at a national level — though some of it is very informative — is fragmentary. This report recommends ways to fill the information gaps by better use of existing nationally-representative data, and through some new measures, in particular, a new, ongoing National Mortality Followback Survey. The aim is to allow us to benchmark where we are today as a society, and what goals we can set to minimize pain and suffering and maximize the quality of life of all of us who will die in the years to come.

Interpreting the Volume-Outcome Relationship in the Context of Cancer Care is a summary of a workshop held on May 11, 2000, which brought together experts to review evidence of the relationship between volume of services and health-related outcomes for cancer and other conditions, discuss methodological issues related to the interpretation of the association between volume and outcome, assess the applicability of volume as an indicator of quality of care; and identify research needed to better understand the volume—outcome relationship and its application to quality improvement.

It is innately human to comfort and provide care to those suffering from cancer, particularly those close to death. Yet what seems self-evident at an individual, personal level has, by and large, not guided policy at the level of institutions in this country. There is no argument that palliative care should be integrated into cancer care from diagnosis to death. But significant barriers-attitudinal, behavioral, economic, educational, and legal-still limit access to care for a large proportion of those dying from cancer, and in spite of tremendous scientific opportunities for medical progress against all the major symptoms associated with cancer and cancer death, public research institutions have not responded. In accepting a single-minded focus on research toward cure, we have inadvertently devalued the critical need to care for and support patients with advanced disease, and their families.

This report builds on and takes forward an agenda set out by the 1997 IOM report Approaching Death: Improving Care at the End of Life, which came at a time when leaders in palliative care and related fields had already begun to air issues surrounding care of the dying. That report identified significant gaps in knowledge about care at the end of life and the need for serious attention from biomedical, social science, and health services researchers. Most importantly, it recognized that the impediments to good care could be identified and potentially remedied. The report itself catalyzed further public involvement in specific initiatives-mostly pilot and demonstration projects and programs funded by the nonprofit foundation community, which are now coming to fruition.

It goes on to recommend public- and private-sector actions that would lead to the development of more effective palliative interventions; better information about currently used interventions; and greater knowledge about, and access to, palliative care for all those with cancer who would benefit from it.

One of the barriers to improving the quality of cancer care in the United States is the inadequacy of data systems. Out-of-date or incomplete information about the performance of doctors, hospitals, health plans, and public agencies makes it hard to gauge the quality of care. Augmenting today''s data systems could start to fill the gap.

This report examines the strengths and weaknesses of current systems and makes recommendations for enhancing data systems to improve the quality of cancer care. The board''s recommendations fall into three key areas: