As part of the strategic planning process, NCI and NIH should:
- Establish a research agenda to elucidate the issues related to cancer survivorship. This research agenda should at least aim to distinguish between and clarify the relationship between physical therapeutics and quality-of-life issues and the degree to which those issues may be generic for all cancer patients or may vary according to factors unique to ethnic minority and medically underserved populations.
- Develop a plan to improve the development and dissemination of cancer information to ethnic minority and medically underserved groups. Such a plan should increase the participation of cancer survivors from ethnic minority and medically underserved groups in outreach efforts. In addition, NCI should improve its efforts at the development of printed information about cancer by expanding the number of materials translated into languages other than Spanish (e.g., Asian and Southeast Asian languages) and ensuring that straight translation is not performed without attending to the possible loss of information and the cultural appropriateness of the translation.
- Establish baseline data regarding cancer survivorship research as it targets and affects ethnic minority and medically underserved populations. As noted in previous chapters, this will require a consistent definition of "medically underserved" groups and active efforts to collect data on these populations.
- Establish a more structured framework for the dissemination of cancer survivorship research findings, targeting health care consumers, survivors, and the significant others of survivors in minority and medically underserved communities as well as the health care providers who serve them.
- Establish a more structured framework for monitoring the knowledge, attitudes, and behaviors regarding cancer survivorship among health care consumers, survivors, and the significant others of survivors in ethnic minority and medically underserved communities, as well as the health care providers who serve them. As noted above and in Chapter 5, some of this can be accomplished through the cancer supplement of the National Health Interview Survey, which asks individuals who have been diagnosed with cancer questions regarding the use of psychosocial support systems (e.g., "After your cancer was diagnosed, did you receive any counseling or join any support groups to help you cope?") and sources of information to learn more about the disease (e.g., "Did a doctor, nurse, or social worker