Developing cancer clinical trial resources for Native Americans.
Members of the Native American community collaborate to develop a cancer clinical trial resource.
Why this item may be useful
This paper provides an example of incorporating members of the community into the development of patient education materials. A collaboration between Native American communities and the National Surgical Adjuvant Breast and Bowel Project (NSABP) was formed to develop a patient education primer on breast health and the Study of Tamoxifen and Raloxifene (STAR) trial. NSABP hired Native American coordinators and a Native American social worker, supporting the development of educational materials in the “Indian way” through trust and relationships. After completion of the initial draft of the primer, gatherings were scheduled with four Native American community-based groups and members of professional Native American organizations to review, edit, and evaluate the primer.
Several lessons learned were highlighted, including the importance of including the Native American community from the beginning of any research. Also, the primer was developed using nonprofit community groups, which allowed primer developers to make donations directly to these groups.