Create a Research Focus in Informatics and Communication
The revolutions in electronic communications and informatics opens up vast new possibilities for enhancing the cost-effectiveness of cancer control activities. Although past NCI research has focused on particular aspects of communication, for example, in health education, and although impressive cancer communications services are offered by agencies such as NCI, a strategic, systematic, coordinated and outstanding research emphasis in this area has been lacking.
Communication is central to effective cancer control across all phases of the carcinogenesis process, from primary prevention to survivorship. New knowledge about effective interventions, both biomedical and behavioral, are emerging at a rapid pace and appropriate information about best practices needs to be efficiently disseminated to enhance decision making. Health care providers, cancer patients, the general public, NCI, other federal agencies, health care systems, and schools are some of the target audiences for cancer communications. These communications can be targeted for greater effectiveness and, in some cases, prepared for electronic dissemination, as a means to enhancing access.
Research has shown that it is especially important to tailor communications to the profile of the target audience. A tailored messages incorporates targeting but provides an individual level of customization over and above the group level of a defined population. Messages must be sensitive to sociodemographics, culture, and ethnic background. Moreover, communication must lead to action, ranging from improved strategic planning and accountability, to changes in individual and collective behavior. Audiences need access to relevant collections of facts, decision rules about how to use the factual information, and strategies and skills necessary for taking action. The reliability and effectiveness of electronic communication and informatics must be tested through rigorous research if they are to make a meaningful impact on reducing the cancer burden. In particular, the use of electronic communication as a means to inform special populations and provide access to tailored information deserves special attention at a time when there are still large segments of society with no access to computers and the Internet.
A computer information system for cancer control research is defined as one that mimics the deductive or inductive reasoning of human experts. The essential components of a computer expert system include: (a) access to a collection of facts (data base) within a particular domain; (2) decision rules pertaining to those facts; and (3) a strategy for making decisions based on the facts and rules. Many conventional educational messages about cancer, such as booklets and pamphlets, are designed to reach as wide an audience as possible. They are often lengthy and contain information not responsive to the needs of many consumers, using standard communications in a "one size fits all" approach to health education. Computer expert systems allow sophisticated tailoring of messages to individuals free of irrelevant information. New technologies permit the power of mass communications and dissemination to a large target audience with the individual attention and specific information that approximates the personal tailoring provided by a health professional.
A few studies have tested the efficacy of electronic communications to tailor messages.The revolution in electronic communications and informatics opens up expansive new possibilities for enhancing the cost-effectiveness of cancer control activities. Recent research has shown that personalized tailoring of cancer-relevant communications to individual needs can enhance desirable behavior change. Although research has focused on particular aspects of communication, for example, in health education, and although impressive cancer communications services are offered by agencies such as NCI, a strategic, systematic, coordinated and outstanding research emphasis in this area has only recently begun to take hold.
Within the NCI Office of Cancer Communications (OCC) is the Cancer Information Service (CIS), established in 1975 to disseminate and interpret accurate and timely information regarding the causes, prevention, detection and treatment of cancer to cancer patients, health professionals, scientists and the general public. CIS conducts significant outreach, with a network of 19 regional offices responding to over 500,000 calls per year. Some OCC programs are interactive and tailored, however, many are largely passive and reactive, in that they wait for motivated individuals to contact them. Research on these programs has been mostly descriptive. Recent funding of a program project grant of collaborative CIS and extramural researchers, however, can serve as a prototype and is an excellent illustration of the possible advantages of a research driven CIS program.
Computer expert systems can be proactive, reaching out and penetrating chosen target audiences and allowing for sophisticated tailoring of messages to individuals. These technologies retain the power of mass communications but with the capacity to provide personalized, specific information, as well as cost-effective dissemination. But they must be studied for their potential use in cancer control efforts. Research in health education has described essential elements of delivering a desirable message to a given target audience, via a particular medium and mode of delivery. However, the generalization of these research findings to electronic communication is unknown. Only a few studies have evaluated the ability of electronic communications to tailor messages to cancer-specific topics. Several recent randomized controlled trials have focused on smoking and diet interventions, comparing computer expert systems to standard cessation, with promising short-term results regarding the former. A few studies have examined tailored messages for older smokers, but, in general, studies have been limited to samples of convenience (e.g., audiences with higher education and income, motivated volunteers) which further limit generalizability. Many parameters of tailoring have not been tested, including basic questions about the level or degree of tailoring necessary to achieve specific outcomes, and the importance of differences in modes and methods of delivery (e.g., mail, telephone, or interactive multimedia). Few studies have attempted to perform outcomes analysis or conduct internal validity checks to ensure that the intervention was delivered as intended. Data on cost of development, cost of implementation, and cost-effectiveness of outcomes are also lacking.
Aside from personal interactive communications, computer information and decision-making systems specific to cancer control can play a significant role in many other areas, including: (a) tracking in real time aggregate community or state-wide data; (b) encouraging lifestyle change in school health education curricula; c) assisting in medical management systems by, for example, monitoring best preventive practices; (d) as part of an integrated electronic medical record, providing primary care physicians with reminders about when preventive health tests are due and patient history information relevant to interventions.
Computers can assist in many aspects of the cancer treatment decision making process, for example, where complex tradeoffs between surgical and medical treatments and quality of life depend on specific information that neither patients nor physicians may have readily available. Interactive multimedia-based systems can first assess the patients knowledge base and then provide individually tailored health information to assist in informed decision making. Computers can also be used for cancer control research in worksites, hospitals, health delivery systems, communities, and schools.