Dissemination of information on legislative mandates and consensus-based programs addressing payment of the costs of routine care in clinical trials through the World Wide Web.

BACKGROUND: Legislative and consensus-based programs that ensure payment for routine care costs in a trial have been enacted by a number of states and government-sponsored health benefits programs. To eliminate the potential for denial of payment by a health plan that can act as a barrier to participation, the public must be aware that these programs exist and what they entail.
METHODS: World Wide Web sites are utilized by patients and their surrogates as a prime source of healthcare-related information. A review of cancer research organization and advocate group web sites was performed to document the degree to which these sites provided information on clinical trial coverage programs. The objective was to determine whether patients were being given sufficient information to overcome barriers to participation related to the existence of clinical trials, their potential benefits, and health plan payment.
RESULTS: Fewer than 5% of the 373 sites reviewed provided sufficient information to communicate to a patient that 1) the institution participates in sponsored cancer clinical research, 2) patients can derive direct benefits by participating in a clinical trial, and 3) payment for treatment in a clinical trial is largely provided by their health plan.
CONCLUSIONS: Sites on the World Wide Web are a key source of healthcare-related information for patients and their surrogates. Organizations involved in clinical cancer research should examine their web sites to ensure that the content it contains is sufficiently detailed, accessible, and readable to inform potential participants fully of the clinical trial options. Copyright 2004 American Cancer Society.