focus groups and interviews, and an ongoing demonstration. Because it addresses multiple conditions, the program can serve as a “one stop” resource for individuals who have other illnesses in addition to cancer.
CHESS services are accessed through home-based computers (organizations using the program often lend computers to patients who do not have them). As an example, information services for prostate cancer include brief answers to 400 frequently asked questions, links to more than 200 articles from the scientific and popular press, and WebLinks to connect users to other high-quality websites specific to the illness. A resource director also identifies local and national services and ways to connect with them. For emotional support, CHESS offers patients and families bulletin board–style discussion groups, each of which is limited to 50 participants and is professionally facilitated. Ask an Expert provides confidential responses to questions via NCI’s cancer information service. Personal stories written by professional writers who interview people with cancer, as well as videos, show how individuals have managed problems frequently identified through needs assessments. Analysis, assessment, and decision-support services help patients think through issues important to them and make behavior changes. A health-tracking program collects data on an individual’s health status every 2 weeks and charts change over time. The design of CHESS accommodates various coping and information-seeking styles by tailoring information and support to users’ interests.
A team of decision, medical, information, and communication experts designs the decision-making and health-tracking tools. All CHESS modules are pilot-tested, then further refined on the basis of patient and clinician feedback before being released for dissemination. Modules are updated regularly to ensure that their content is accurate, relevant, and current and to improve their ease of use. All information is reviewed and updated (if needed) annually by advisory panels that include a range of professionals and patients. Intra-CHESS links and links to external websites also are checked biweekly. Patient feedback is actively solicited to identify voids in information and guide the development of system enhancements. Clinicians at participating research sites are encouraged to provide ideas for how CHESS can be adapted to better meet their needs. In addition, health care organizations are urged to review the content of modules before using them with their patients. Suggestions, questions, or feedback on the program content can be e-mailed to CHESS.
CHESS has been studied extensively across multiple illnesses, including cancer, and in a number of different ways, ranging from randomized trials and field tests designed to assess its impact on quality of life (Pingree et al., 1996; Gustafson et al., 1999; Shaw et al., 2006) to evaluation of the cost and effectiveness of different methods for disseminating the CHESS systems (Gustafson et al., 2005a,b). Results of these studies show positive effects on