Capacity, Communication and Coordination - Leitmotifs of the INCTR's Strategy

by Ian Magrath

Attending INCTR's Governing Council meeting in Brussels were (standing, left to right) Kishor Bhatia, Tahir Shad, Anslim Narinesingh, Ian Magrath, Louis Schoofs. (Seated) Barbara Scheffler, Aziza Shad, Sultan Al-Sedairy, Dennis Wright, and Guy de Thé.

"Cancer control" refers to the process of reducing illness and death caused by cancer through intervention (prevention or treatment) based on evidence. This principle applies as much to countries with limited resources as to those with extensive resources, although the problems in developing countries—as well as the patterns of cancers—are very different. Consequently, the slate of interventions and the relative priorities given to each cancer may differ markedly from one country or world region to another. The efficient control of cancer requires the availability of sufficient capacity (human and financial) and communication among the various participants in the process, to permit the establishment of coordinated programs that maximize available resources. The need for capacity is self-evident, but the primary importance of human capacity is worth emphasizing. Money makes things possible, but it is the quality of human capital that determines the success or failure of any enterprise. Moreover, funds are more likely to be acquired when donors can be reassured that their contributions will be used wisely and efficiently.

Communication, for present purposes, refers to the use of information to enable or influence activities—for example, the use of information to determine where maximal impact can be made and to inform those with the ability to enact change. The exchange of information and the dissemination of the results are critical to cancer control. Information that is collected but not acted upon serves no purpose. Cancer registration data, for example, that provides information about the incidence of cancer in a given region is only as valuable as the uses to which it is put. In conjunction with knowledge of how best to control specific cancers, information on the incidence of various cancers permits the development of policy—how, for example, available resources can best be used and what kinds of additional resources or programs may be required. It also may stimulate research into the genetic or environmental causes that produce a particular pattern of cancer.

In countries in which communication is well-developed, access to the information needed to decide policy is good, as are facilities for conducting health programs. Even so, within the USA, the President's advisory panel has noted the "insufficient application of discoveries about cancer and inadequate access to appropriate cancer care" within the USA. How much more difficult is the situation in developing countries, where research is rarely conducted, where the necessary resources for clinical data collection may not be available, and where data that is collected is often of poor quality, not used at all, or used sub-optimally? There is often no coordination between those who collect data and those responsible for the early detection of cancer or the delivery of cancer treatment. Often, facilities for one or more of these activities are lacking. Even when excellent facilities for cancer care exist, primary care physicians and/or the public may be unaware of the signs of cancer so that patients are either not diagnosed or are diagnosed only after an inordinate delay. In such circumstances, cure is impossible, or at best, requires the dedication of more resources and results in greater risks and inconvenience to the patient.

Figure 1. Problems

While cancer registration has been given a great deal of attention, data is still collected only from certain regions in approximately 50 of the more than 180 countries in the world. Limited though this information may be, it is more substantial than data on available resources for cancer control. The collection of such information alongside data on the incidence of various cancers would greatly facilitate the development of a rational and coordinated policy for building capacity for cancer control. The development of a comprehensive, coordinated, and durable strategy also will require information regarding the existence and quality of training programs in various cancer-related disciplines, the degree of involvement and funding from government departments of health, and the existence, constitution, and goals of various cancer organizations. Cancer control, even in affluent nations, is usually conducted with less than optimal cooperation between the public and private elements. At the most basic level, and excluding primary prevention for the moment, there are three stages that need to be addressed: diagnosis of the patient, access to adequate care, and outcome measures (see Figure 1).

Presently, most of the available resources are put into treatment rather than primary prevention. Behavioural modification of the public and of the relevant industries requires a quite separate approach. To meet the needs of patients with cancer, there must be centers where a reasonable standard of cancer care can be delivered. Patients needing intensive chemotherapy, sophisticated surgery, or radiotherapy can be treated only in specialized centers, but smaller units may be able to deal with early stage cancers and palliative care. Yet in all developing countries, the fact that patients present with much more advanced disease than is the case in resource-rich countries is only too evident, and directing some resources at early detection would greatly relieve the overload on cancer care providers. Indeed, if cancer could be detected earlier, more patients would survive even without any enhancement of existing services for treatment. Early detection programs can be specific, i.e., screening programs with broad population coverage for particular cancers, but only a small number of cancers are amenable to such programs. There is no substitute for education of the public and of the health care providers that the public will first approach for help. Indeed, one of the benefits of screening programs is that they raise awareness of cancer among the population at large and non-specialist members of the medical profession. Since the goal is to detect cancers at a curable stage, screening programs also carry the implicit message that cancer can be cured—an important message to transmit if individuals who suspect that they may have cancer are to be persuaded to act quickly. Equally important, this message needs to be received by primary health care providers, and by those responsible for the development of health policy.

Figure 2. Solutions

One other element in the equation is often overlooked in developing countries—ensuring that patients are followed-up so that the efficiency of the interventionary measure can be evaluated. Without such evaluation, the possibility always exists that precious resources are being wasted on ineffective measures. Educational attempts that do not reach their target audience, incorrect diagnoses, treatment that is ineffective or incomplete, and the collection of inaccurate information may all compound problems. Moreover, just as cancer registry data provides a foundation for research into the causes of cancer and for the development of cancer control policy, so information on the efficacy of cancer treatment is essential if present endeavors are to provide a foundation on which to build. In countries with limited resources, not only the overall cancer pattern, but the pattern of subtypes within a disease entity, the accuracy of the diagnosis, the availability and quality of treatment, the tolerance of the patient for therapy, and the quality of supportive care may differ markedly from one country to another, and between resource-poor and resource-rich countries. It will be necessary to address each of these issues in order to optimize cancer control. Clearly, controlling cancer is an enormous task, but one more likely to be accomplished by a coordinated approach. The major points for intervention are shown in Figure 2.

The INCTR plans to work with colleagues in developing countries to establish programs designed to obtain information on available resources, and on the reasons for late patient referral and loss to follow-up after treatment. With this information in hand, it should be possible to better utilize existing cancer services and to expand their resources in a fashion consonant with local needs. Initially, a series of pilot programs in the areas of public and professional (specialist and non-specialist) education, early diagnosis and treatment (in the form of internationally conducted clinical protocols) will be undertaken. In order to boost limited local resources the INCTR will institute consultation programs, visiting professorship programs and staff exchanges, and will utilize modern communications, including telemedicine, teleconferencing and teleimaging in training and education. It will be important to stimulate cooperation within countries and between countries—cooperation that starts with the major cancer centers or hospitals, but is spread, over time, to more peripheral hospitals. In addition, the INCTR will invite other major organizations to work with it in the development of its programs, utilizing their strengths and experiences, and helping to ensure that their knowledge and expertise are as accessible as possible.

This is no small task and success will be dependent upon building capacity as well as enhancing communication and coordination of effort. Globalization, in the economic sense, has been criticized because it enhances the ever-increasing gap between the rich and the poor. Global sharing of knowledge and experience, on the other hand, is the surest way to diminish inequalities, to build capacity, and to bring the benefits of modern science and technology to all, rather than to a fortunate few.