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Saving Women’s Lives: Strategies for Improving Breast Cancer Detection and Diagnosis
ways, such as participating in clinical research studies. The need for public support in the fight against breast cancer goes beyond dollars, yet much of the public is unaware of the opportunity to contribute through participation in clinical studies.
It could be relatively simple to integrate information about “Other Ways to Help” with publicity about fundraisers. Such campaigns could inform people about the need for tissue samples and for participants in clinical studies. In fact, it is conceivable that organizers of clinical studies could collaborate with race marketers to promote either specific studies, or to conduct a more general campaign to educate the public about the merits of research and the need to donate specimens or time if they are invited to participate in a research study.
Epidemiologic studies needed to identify breast cancer risk factors require carefully selected study populations; self-selected volunteers would not be eligible. Unfortunately, the type of trial for which enrollment is particularly difficult is also the most restrictive in terms of eligible study populations. Nonetheless, there are certain studies for which volunteers could be helpful, such as preliminary trials of novel screening technologies.
Encouraging enrollment in well-designed clinical studies could facilitate the development of more effective approaches to the early detection of breast cancer. Breast cancer advocacy groups, the American Cancer Society, and funders of clinical research studies each bring different areas of expertise and constituencies that could complement each other effectively if they were to collaborate in improving enrollment in clinical studies. Breast cancer advocates are expert in mobilizing support for breast cancer research. They are also attuned to how potential study participants might react to enrollment requirements and could provide time-saving advice on ways that the design of clinical studies might be refined to promote more efficient enrollment, or to identify aspects of a study design that might needlessly deter enrollment. Finally, breast cancer advocacy groups are in an ideal position to promote enrollment through their established outreach programs. Clearly, such collaborations should apply only to studies that are not for financial gain on the part of the researchers or their institutions and that are clearly aligned with the shared goals of researchers and advocates—specifically for reducing mortality from breast cancer.
Will HIPAA Hamper Research?
The Health Insurance Portability and Accountability Act of 1996 (HIPAA) is a complex federal regulatory effort that has many parts and purposes. It was created to streamline industry inefficiencies in data transfer, improve access to health insurance, better detect fraud and abuse, and ensure the privacy and confidentiality of health information.