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The President's Message INCTR's Evolving Strategy
The lack of resources in low- and middle-income countries, in particular, limited access to clean water, sufficient food and basic health care, has led some to conclude that such countries cannot afford to address the complex set of diseases collectively referred to as cancer; more lives, the argument goes, could be saved by directing available resources to more basic issues of public health and infectious diseases. In contrast, the Universal Declaration of Human Rights states that everyone has the right to medical care. But the priority given to cancer is not simply a question of brutal pragmatism on the one hand, or the rights of individuals on the other. Cancer has become a public health issue that must be addressed even by the low-income countries because of the inexorable augmentation of the global cancer burden described in Part 1. Yet neither cancer nor non-communicable diseases are mentioned specifically in the UN Millennium goals, which focus, with respect to health, almost exclusively on mortality in under-fives, maternal health, AIDS, malaria and tuberculosis. Nor has an equivalent body to the Global Fund to Fight AIDS, Malaria and Tuberculosis, established in 2002 by the G8 countries, been created in the field of non-communicable diseases. These three serious infectious diseases are sufficiently common to warrant a high priority, but so does cancer. The number of new cases of tuberculosis in the world in 2005 (most from developing countries), for example, was 8.8 million - a figure likely to be exceeded by the number of new cases of cancer per annum in developing countries in the course of the next few years. The relatively poor survival rate of patients with cancer in most low- and low-middle income countries is sometimes used as a reason not to address cancer at a public health level, but this is a consequence, at least in part, of the low priority assigned to cancer in these countries. In fact, much could be done at each of the levels of cancer control (prevention, early detection and treatment, and palliative care) without significantly affecting important programs directed towards primary health and infectious diseases - and such actions are needed now. The need for action was recognized with the creation of the Program of Action for Cancer Therapy by the International Atomic Energy Agency in 2004 and subsequently by a resolution adopted by the 58th World Health Assembly that took place in May 2005 (see panel). As a result, an increasing number of governments in low- and middle-income countries are cognizant of ongoing epidemiological transitions and recognize the need to reduce the prevalence of common risk factors for non-communicable diseases, and also to take action against specific cancers. All countries can implement programs in cancer prevention, particularly with respect to smoking (most already have), and almost all countries have some ability to care for patients with cancer. Even in regions where there are few or no cancer specialists cancer treatment is subsumed into general surgery, medicine and pediatrics, and many specialists deal with both benign and malignant diseases. Cancer centers exist in even the poorest of countries, although diagnostic and treatment facilities may be inadequate because of the severe limitations in human and material resources. In preparing for the future, the lack of resources is the biggest obstacle to progress; building human capacity for the early detection, diagnosis and treatment of cancer is essential if the millions of patients who will develop cancer in the coming years - particularly those in the lower echelons of society - are to be given a chance to live. Approaches to Capacity BuildingOf all resources required to control cancer, knowledge (assuming its effective use) is surely the most important. Much can be accomplished without the expensive equipment available in high-income countries, however desirable in specific circumstances, but a deficiency in skills and knowledge on the part of the health care provider will lead to inefficient care - and often to the loss of life that might have been avoided, even in low-resource settings. Moreover, however sophisticated the available equipment, its value is dependent upon the availability of trained technical, nursing and medical staff. Ensuring that the existing health workforce is well educated is a critical early step in capacity building, and even when resources are severely limited, increasing the efficiency with which they are used will result in tangible benefits to patients - both immediate, and in the future, for today’s health professionals are responsible for the education and training of tomorrow’s.For these reasons, INCTR focuses particularly on improving the knowledge, skills and discipline of the professional health workforce in developing countries in order to fulfill its primary mission of capacity building for cancer treatment and research. In this regard, primary and secondary health care providers are as important as the oncology team, for unless cancer is suspected in the presence of its early signs and the disease diagnosed and treated promptly, there will be little impact on presently high mortality rates (a major reason for which is late diagnosis), and mortality will climb steadily as the cancer burden increases. Specialists who are not exclusively devoted to cancer also have an important role to play. Effective cancer therapy begins, of course, with accurate diagnosis, which requires good quality pathology both to establish the diagnosis and also to ensure that prognostic factors which may influence treatment planning are identified. Unfortunately, many pathologists may not have access (either for cost or other reasons) to more recent tools that add greatly to diagnostic accuracy and may sometimes be essential for prognostication and treatment selection. Equally important to the choice of therapy is the extent (stage) of disease, the determination of which requires a variety of investigations, among them the removal and pathological examination of potentially involved tissues at the time of surgery and imaging studies of both the primary site of disease and anatomical regions where spread is likely. Unfortunately, equipment or materials required for accurate staging are often unavailable to the bulk of cancer patients in low- and middle-income countries, such that many patients receive inappropriate therapy. When cancer is localized, surgery (performed by a broad range of surgical specialists or by surgical oncologists), radiation therapy, or a combination of the two, can cure a significant proportion of patients. In some circumstances this fraction can be increased by the addition of systemic therapy either before or after loco-regional therapy. Prior chemotherapy can also reduce the need for radical and potentially mutilating surgery such that the quality of life may be greatly improved, and sometimes, potentially fatal late complications avoided. Some cancers, even when widely disseminated, are curable by chemotherapy alone. Clearly, effective cancer management requires a broad range of health professionals and technicians, and excellent communication among the disciplines. It also requires efficient links with community health workers responsible for suspecting cancer in the first place, or for screening for asymptomatic disease. The Standard Model Building human capacity is essential to effective cancer control in developing countries, but such capacity building must be adapted to local circumstances as well as needs. It is often assumed, for example, that training in a technologically advanced nation will provide the best possible educational experience. It is true, of course, that a number of cancer centers have been established in developing countries by highly motivated individuals trained in institutions in, for example, Europe and the USA, and many health professionals currently practicing in developing countries have had some training abroad; not infrequently, specialist qualifications are unavailable in their own country. Unfortunately, such training is usually based on the needs of the institution providing the education rather than the those of the trainee’s country of origin. The technological (and economic) gap between high- and low-income countries has increased greatly in recent decades, such that overseas training is, in general, less useful now (except, perhaps, for the for-profit sector or the relatively few advanced academic centers) than was the case several decades ago. This is one of many reasons that those trained abroad are frequently tempted not to return to their home country. At best, training in high-income countries is an inefficient and expensive way of building capacity in developing countries (Table 1).
A second element of the “standard model” is to hold western-style symposia or congresses in low- or middle-income countries. Such meetings, in which speakers are usually predominantly from technologically advanced countries, generally address the latest approaches to diagnosis and treatment, often entailing sophisticated molecular studies and expensive drugs. Many of the external experts are unaware of the extent of the obstacles to effective care that exist in the host country (meetings are usually held in high-quality hotels); some are expatriates anxious to demonstrate their achievements in their adopted country. In large countries, or those higher up the socioeconomic ladder, there may be a cadre of sufficiently well-trained health professionals to be in a position to benefit from the material presented, and, assuming adequate infrastructure in their own institution, to pass on the benefits to their patients and trainees. Often, however, such individuals come from a very small number of institutions, many in the for-profit sector, and most attend similar meetings in the technologically advanced countries, such that regional congresses have limited value as national capacity building tools, although they may serve other purposes. In general, publicly funded institutions, which provide the bulk of health care in low-resource settings, are unlikely to have the resources necessary to be able to benefit from the information provided in conferences of this kind and their health professionals are less likely to be invited or offered support. Like each of the components of the “standard model”, the overall value of this approach depends upon many factors, one of which is the level of development of the host country (Figure 1).
The third element of the standard model is the provision of guidelines for the establishment of cancer control programs or treatment. Many of these are of high quality, but frequently have little impact because they do not reach those most likely to benefit from them, or if they do, the guidelines are modified extensively because of personal whim or lack of resources required to follow them closely. Guidelines are generally considered to be approaches already validated by existing evidence, such that outcomes, other than occasional assessment of the degree of adherence to the guidelines, are rarely measured. Moreover, since much (although not all) of the evidence used to create guidelines comes from the high-income countries, where knowledge, skills, discipline and resources, to say nothing of populations, environments and culture, differ markedly, some, and perhaps much of the evidence used to create them may have little relevance - or unknown relevance - to developing countries. Reassessment in these very different circumstances may be required. The efficacy and toxicity, for example, of chemotherapeutic regimens may be different in very poor, often malnourished populations living in overcrowded, unhygienic circumstances, or when supportive care is inadequate, while cytopathology and mammography may not be feasible or cost effective at a national level. Yet, with some exceptions (e.g., simple techniques for screening for cervical cancer) western approaches are assumed to be optimal. Finally, emphasis is often given to the development of new technology or methods that may “bridge the gap” between high- and low-income countries. On occasion, new tools are extremely valuable (the effective use of hepatis B, and, potentially, human papilloma virus vaccines, for example, or the use of information technology). In other circumstances, however, infrastructural limitations may obviate the value of novel approaches or technology. Tele-pathology, for example, will have little or no impact when specimens are inadequate or poorly prepared, improperly labeled, or have taken weeks or months to arrive at a reference center, during which time the patient’s disease may have progressed beyond the stage of curability. Conversely, making a diagnosis promptly is of little value if appropriate treatment is not available or is too expensive for the patient to afford. Additional problems that may need to be overcome include intermittent reagent or drug supplies, a lack of hygiene or basic hospital epidemiology, poor compliance with planned treatment, poor access to emergency care, frequent power outages, lack of climatisation (that may affect sensitive instruments) and lack of equipment maintenance. These circumstances are not universal, although in the low- and lower-middle income countries they tend to be the rule rather than the exception. An Alternate or Supplementary Model It is surely a truism that, in all countries, theoretical training in a practical discipline such as health care is insufficient to ensure effective practice. For this reason, INCTR emphasizes long-term collaboration in the context of specific projects as a multipurpose tool in which education is coupled to patient benefits. This results in the bulk of training being “in-country” with trainees receiving hands-on experience, regardless of whether the project relates to early detection and treatment or palliative care. Training is provided prior to implementation, and various aspects of performance are monitored throughout the project through data collection and quality control, including on-site visits. Training and, indeed, learning for team members, including health professionals and data managers, is seamlessly interwoven with the project itself, positively influencing its outcome while at the same time providing patient services and developing human resources. The educational process, which includes both formal and informal elements, extends over many years and there is a strong mutual learning element, particularly as it pertains to overcoming resource limitations. The results of the project, e.g., the number of patients screened or treated and the outcome of treatment (including palliative care), provide an overall measure of success - the most relevant measure of all, since all training and education is ultimately directed towards improving cancer control. Projects are conducted with the full involvement of local experts at all stages - design, implementation, conduct, analysis and publication. This is possible because each is led by a “strategy group” consisting of individuals from participating countries with at least some specialized knowledge relevant to the project. Strategy groups are coordinated by INCTR’s Clinical Trials Office and serve several purposes. Firstly, the project is mutually owned by the strategy group, and not by INCTR. Secondly, intermittent strategy group meetings ensure that all members remain informed of progress and have an opportunity to discuss any problems that may have been encountered as well as progress made. Joint decisions are made re: publications, including topics and authors. INCTR staff members, and, where necessary, other experts, participate in strategy group meetings and assist in developing all project-related documents (e.g., protocol documents, case report forms, proposals for grants and publications). Strategy group members are free to publish or present their individual institute data, but group decision is required when unpublished results from several participating centers is to be disseminated, whether via a meeting or a publication. By participating in the process of presentation and publication, members gain informal training in scientific analysis and writing. Long-term collaborations have many advantages over short term courses and workshops (and even self-learning) as the sole training tool, but they do not necessarily replace these other forms of continuing education. Rather, they enhance the value of a broad range of educational tools through continuous first-hand experience of the subject matter. The benefits of collaborative projects extend to the patient (or individual screened for cancer). In the context of treatment studies, for example, patients benefit from being treated in a standard fashion agreed upon in advance by the strategy group, aided by the comments and suggestions of experienced advisors and of INCTR’s Ethical Review Committee (all studies are also reviewed by local ethical committees). Most treatment studies are directed towards exploring the efficacy and toxicity of primary treatment regimens in the context of the available resources rather than new drug development, but the formal, scientific approach ensures greater discipline of care delivery and greater efforts to ensure that patients are followed-up in order to accurately measure outcomes or to make new observations, such as factors that influence survival. Projects may be associated with more basic or epidemiological research and international projects provide opportunities for “geographical studies.” Finally, in addition to educational and patient benefits, successfully completed projects contribute to the evidence base for cancer control, both in the country or region in which the project was conducted and beyond. Creating Centers of Excellence Inherent to each project is the creation of “centers of excellence” capable of good patient care, education of health professionals and conducting research. As nodal points in regional networks (Figure 2), centers of excellence can help disseminate information and training relevant to early diagnosis, treatment or palliative care and, where appropriate, provide consultation. Such networks, as they develop, will include electronic communication and access to information and training tools made available on the World Wide Web. Over time, regional networks will ensure that there is a population impact, eventually at a national level, and may also provide relevant training and education to health care providers from other countries of similar socioeconomic status, hopefully, thereby, lessening migration to high-income countries. It will be important to develop systems of accreditation and re-certification, based on continuing education for both centers and individuals in order to provide assurance that appropriate standards are being reached and maintained, and to provide targets and a sense of accomplishment for those who satisfactorily complete training.
Foundational ProgramsIn addition to capacity building via specific projects, INCTR is in the process of developing a set of programs which are designed to create a firmer foundation on which to build capacity and improve cancer control. These include workshops focused on themes of particular - and pragmatic - relevance to the country or region in which they are held, training in the systematic review of locally developed evidence, building infrastructure for clinical research, increasing the availability of skilled teachers or health providers through partnership programs, and developing an integrated approach to cancer control that promotes the extension of networks into the community - where the process of cancer control begins.Focused Workshops The purpose of focused workshops is to identify obstacles to effective cancer control - and potential solutions - in selected thematic areas of relevance to specific countries or regions. Each workshop has plenary and focused group sessions with local and external experts. Outside experts often visit local institutions, organizations or departments relevant to their specialty, to observe at first-hand the available resources. Focused workshops are associated with specific outputs, such as plans to overcome identified obstacles or to establish educational programs for health workers, or the production of manuals specifically designed for the country or region. Workshop reports may be a valuable aid to the national cancer control committee in developing national priorities and action plans. A report of the first focused workshop, held in Tanzania in August 2007, is included in this Newsletter. Cataloging and Reviewing Local Evidence In order to begin to overcome the heavy reliance on Western institutions for the creation of evidence on which to base cancer control interventions, this program is designed to create a data base of all published materials on the control of specified cancers and then to train scientists and health providers to review the available evidence in a systematic fashion in order to both assess its quality and to answer questions of importance to effective national or regional cancer control. Systematic reviews will be made widely available. This program is designed to emphasize the importance of local research in controlling cancer, to assess the quantity and quality of existing information and to help create a research ethos. It should also help to identify gaps in existing research results, and thus assist investigators and funding bodies to decide upon research priorities. Building Infrastructure for Clinical Research The multiple values of clinical research to cancer control in developing countries have been alluded to repeatedly in this message. Yet such research cannot be conducted in the absence of the necessary infrastructural foundation in participating institutions and, potentially, cooperative groups. INCTR intends to expand its training tools for clinical research and to develop a program of accreditation of institutions and individuals in clinical research management. This will encompass all members of the research team, from investigators to data managers. While ongoing INCTR projects should benefit, it is also anticipated that the enhanced infastructure will enable institutions to conduct more research initiated by their own staff members, and to link together as cooperative groups to study optimal approaches to patient care in their own national context. At present, most clinical research studies are related to product development and are conducted almost exclusively by the pharmaceutical industry via contract research organizations. Such studies do not usually provide infrastructure beyond the immediate trial needs or encourage cooperative research. Product development is important, but so are new ways of using well-established drugs (new combinations of which, for example, have been responsible for improving outcome in childhood cancer). The latter studies are almost exclusively conducted by single institutions or cooperative groups.
One significant obstacle to the expansion of training and educational efforts “in-country” is the need for experts to visit such countries and to spend enough time there to understand local needs and problems and to provide relevant training. Although an INCTR Visiting Expert program has existed for several years, the envisaged partnership program will complement this through matching western institutions with one or more institutions in developing countries for the purpose of developing long-term relationships involving multiple expert visits (mostly to the developing country) designed to address identified needs. Mutual benefits should result through providing a broader experience to western experts and trainees. Such partnerships could include a variety of health professionals, including oncologists, nurses, pharmacists, radiologists, pathologists and even administrators, and might encompass mutually conducted research projects. In addition to visiting experts, digital solutions to capacity building, including online multidisciplinary meetings or one-on-one sessions for radiologists or pathologists, and the provision of access to e-learning modules relevant to cancer control in low- and middle-income countries will be included in this program. Dr Norman Coleman of the NCI is establishing a similar program called the “Cancer Expert Corps” and every effort will be made to ensure that this and the INCTR program are complementary. Community Health Centers As mentioned, primary health care providers have a critical role in cancer control. They are usually the first health professionals to see cancer patients and must be trained to suspect cancer in appropriate circumstances and to ensure that the patient promptly undergoes diagnostic tests and receives necessary treatment. Community based health care centers can undertake screening of particular cancers, provide home-based palliative care and play a major role in public education. They are also in a good position to work with NGOs that can help create awareness, provide counsel for suspected or actual cancer patients and help raise funds necessary to sustain programs. |
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Copyright © 2010 The International Network For Cancer Treatment and Research