Studies of disability prevention are also essential for maximizing the breast cancer survivor's ability to participate in valued social roles and activities.

  1. How can investigators define and identify techniques for delivering effective and cost-effective health care to all women to prevent, detect, diagnose, treat, and facilitate recovery from breast cancer? The IOM (1993) outlined a number of target topics for health services research including: barriers to state-of-the-art health care, health care seeking behavior, patient treatment preferences, and barriers and inducements to participation in clinical trials. These topics remain important. Other areas for investigation that have emerged include access to care, patterns of utilization of health services, patient—provider communication, provider education and behavior, economic and cost analyses, issues relating to policy setting and guidelines, and health care delivery systems.

    Use of computer information systems is increasingly important in patient tracking, tissue bank administration, networking genetic information, and facilitating enrollment in clinical trials. These systems require additional investigation prior to widespread implementation because of confidentiality and acceptability issues.

    Studies regarding ethnic, cultural, and personal differences in health beliefs and health care seeking behavior will yield important information for those providing care and setting policy. Also necessary is accurate, reliable, unbiased information on direct and indirect costs associated with genetic testing, prevention strategies, screening and diagnostic techniques, or a given treatment; such information is a critical component of realistic health care planning and delivery. An area of urgent importance is the effect of managed care on breast cancer screening, detection, treatment and follow-up. There is concern about the trade-off between quality and cost of health care.

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