PSYCHO-ONCOLOGY, VOL. 3: 155-157 (1994)

NEWS FROM THE SOCIETIES Bridging the Gap Between Research, Policy, and

Practice" JESSIE C. GRUMAN and RENA CONVlSSOR

Centre for the Advancement of Health, Washington, D.C.

Virtually everyone agrees that the U.S. health care system is in trouble. There are many competing options for health care reform and virtually no consensus about what system or plan will work best. There is agreement about only one thing: something must be done. The current debate taking place in Washington and across the country is focused primarily on strategies that address cost and access: who pays for and who should receive health care. These are structural concerns that will accelerate the existing trends in the delivery of health services.

Yet there is clear evidence that ensuring universal insurance coverage will not improve the health of Americans. There is a mismatch between the current health care system and the health needs of its citizens. In order to correct this mismatch, the system of care that evolves must be responsive to the changes in pat- terns of disease and demographics and must integrate new findings about the nature of health and illness. Such reform has important implications for the field of psycho-oncology This paper provides a view of health care reform that is relevant to psycho-oncology and describes the efforts of the Center for the Advancement of Health to support research on the psychosocial aspects of cancer.

HEALTH CARE REFORM

For the next several years, Congress, special interest groups, and the American public will debate the struc- tural issues of health care. Regardless of the specific legislation that is passed, regulatory changes at the national and state level will accelerate the growing trend toward managed care and increased accountability for costs and services. However, the question, 'what is appropriate health care' is not yet on the table or in the minds of key policy and decision makers.

It is not until voters realize that the type and quality

* This paper was adapted from a talk delivered by Dr. Gruman at the Psycho-oncology V: Psychosocial Factors in Cancer Risk and Survival Conference sponsored by IPOS, ASPOA, the European School of Oncology and Psychiatry Service at Memorial Sloan-Kettering, October, 1993.

of medical services they are accustomed to receiving are no longer available upon demand that our nation will begin a serious discussion of what health means, how we achieve it, and what services are reasonable to prevent and treat disease and maintain health. It is at this point that we as a nation will begin to discuss the content of health care and the issues that are of interest and concern to the field of psychooncology.

This second generation health care reform debate will be shaped by three factors: (1) new developments in our understanding of health and illness; (2) the aging of the population and the concomitant increase in chronic disease; and (3) the real-world constraints of more accountable health care.

( I ) Changes in knowledge New knowledge about health has implications for the

role of prevention, the practice of medicine, and the design of health systems. There is growing evidence that once we have accounted for the genetic and purely biological contributions to disease, there will remain a substantial portion of variance that can only be accounted for by social, environmental, psychological and behavioral factors. Gender, race, level of education, and economic status all make for very different life experiences. These experiences shape our health behaviors, our life styles, our responses to chronic and acute stress, and our social relationships and support systems. Not surprisingly, these experiences also affect our biological and psychological functioning.

(2) Changes in the pattern of disease Increasing prevalence of chronic disease requires

improving the quality of Iife in addition to curing disease. Our current health care system, developed when tuberculosis, pneumonia, and influenza were common called for short-term, institutional care aimed at curing disease. But now, seven of the leading causes of death-chronic and progressive diseases, such as heart disease, stroke, and cancer-are largely preventable by changing behavior. However, there are

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156 NEWS FROM THE SOCIETIES

more older Americans, and, thus, more people with chronic diseases and disabilities. For most people with these chronic/progressive diseases, cure is not possible. Rather, they need health care to help them live with illness-relieving suffering, managing symptoms, coping with fear of further illness, allowing them the fullest possible level of functioning and quality of life in their homes and communities.

(3) More accountable health care The need to maintain a high level of medical care

while containing costs will increase incentives for eflcient, health care. A bedrock principle that is central to the financing of the Clinton Administration’s plan is an emphasis on evidence-based treatment. This comes from a strong sense that the ordering of diagnostic tests is often incoherent, excessive, and expensive, and that medical and surgical interventions may be performed without a clear outcome expected by either physician or patient. As interventions are increasingly subjected to tests of efficacy, many of them will be dropped for lack of evidence of effectiveness.

These changes present both an opportunity and a challenge for psycho-oncology. Many of the psychosocial interventions developed for cancer patients over the years have great potential to improve quality of life, reduce medical utilization, and improve health and medical outcomes at a lower cost. The opportunity is that in this time of health system reform, the addition of improved quality of life and functional outcomes as a legitimate goal for medical care offers a framework that will bring us much closer to solving our current health problems. The incentives will be on the side of evidence-based interventions, whether they are medical or behavioral.

The challenge for psycho-oncology is that, for the most part, the interventions traditionally classed as health psychology, behavioral medicine, and psychosomatic medicine have not been subjected to thorough testing. There is little consensus about what constitutes a particular intervention. Few randomized controlled trials and even fewer cost offset trials have been performed, and there is little standardization of interventions themselves. We must redouble our efforts to build a body of solid scientific evidence that documents the effectiveness of specific psychosocial and behavioral interventions.

Following is a description of the activities the Center for the Advancement of Health has undertaken to encourage the field of psychooncology to seize this opportunity and to meet this challenge.

The Center for the Advancement of Health was established in 1992 by the John D. and Catherine T. MacArthur Foundation and the Nathan Cummings Foundation. The Center’s purpose is to achieve the widespread acceptance of a view of health that

recognizes the role of physical, behavioral, psychological, social and environmental factors in promoting health and in preventing and treating disease. The Center’s focus is on the interaction of mental and physical states as they influence health and illness, and on the implication of this interaction for the design, operation, and effectiveness of the health care system.

One of the Center’s major foci is applying this perspective to the treatment of cancer. Funded by the Nathan Cummings Foundation, the cancer initiative works to increase the priority of and resources devoted to psychosocial research on cancer and expand the quality and availability of psychosocial services for cancer patients and their families. The Center has undertaken four projects to further these aims:

( I ) Increasing research dollars The Center has been working closely with Congress

and the National Cancer Institutes to increase support for psychosocial research in cancer as part of the NIH Revitalization Act (. 103-42) which allocates a three- year set-aside to increase funding for cancer control activities. According to the conference report, ‘the Conferees are particularly interested in seeing the Div- ision of Cancer Prevention and Control fund initiatives such as (1) large scale community intervention trials to study methods of reducing the risk and mortality of cancer; (2) community and physician education pro- grams to determine effective methods of encouraging screening; (3) psychosocial interventions to improve quality of life and increase treatment compliance.’ The Center will monitor NCI’s expenditure of these funds and will work with the institute’s staff, its advisory boards, the specialty press (such as The Cancer Letter), and interested Members of Congress to ensure that the money is spent as directed.

(2) Developing psychosocial practice guidelines In its 1993 Appropriations Committee Report, Con-

gress encouraged the NCI to provide psychotherapeutic services to cancer patients. The Committee stated, ‘that the National Cancer Institute should require all NCI- funded cancer centers to provide supportive psycho- therapeutic services to cancer patients at all stages of their diagnosis and treatment, and to their families.’ The statement also describes what it considers to be psychosocial services. Center staff will work with psychooncology cancer researchers, cancer patient advocacy and survivor organizations, and professional groups to develop consensus about the minimal essen- tial services that should be available to all cancer patients. We will then work selectively with researchers, clinicians, and federal agencies to facilitate the develop- ment of practice guidelines.

NEWS FROM THE SOCIETIES 157

(3) Teaching advocacy skills to cancer patients There is evidence that individuals who are actively

engaged in maintaining their own health and in their medical care have an improved quality of life and more satisfactory health outcomes. Cancer patients’ voices have not been clearly heard on the type of care they receive, the way they and their families are treated, the lack of information about cancer risk, and on the many other issues about which they care deeply. The Center will work with cancer survivor organizations and a number of professional groups to develop a guide and educational program through which they can train cancer patients and other concerned activists to engage in productive advocacy efforts related to cancer care.

(4) Supporting a network of psychooncology researchers

Although the Center is not a membership organiz- ation, we are interested in alerting psychooncology researchers and practitioners to funding opportunities and other national events that are relevant to the development of this field. Currently, Center staff is compiling a list of private foundations and other private sources of funds for research on psychosocial

issues and cancer and are conducting a survey of psychosocial services offered at all NCI-funded compre- hensive cancer centers in order to establish a baseline against which to measure change. In addition, we have developed extensive background materials about the NCI and the American Cancer Society’s commitment and activities in this area and are monitoring their activities closely.

A ROLE FOR PSYCHOONCOLOGISTS: LOOKING TOWARD THE FUTURE

The current debate on health reform promises to have far-reaching consequences for psychooncology research, practice, and care. We encourage you, researchers and practitioners in this field, to recognize the important role psychooncology can play in moving the nation toward a system of humane and com- passionate health care that can truly improve the health and well-being of all Americans.

To join the Center’s network of cancer researchers, activists, and patients, please send your name, affilia- tion, and address to: Center for the Advancement of Health, 1730 Rhode Island Avenue, NW, Suite 308, Washington, DC 20036, USA.