Research Subject Advocacy

Patient Advocacy in Research

In 20 years of breast cancer advocacy, I’ve witnessed major changes in attitude toward advocates on the part of basic researchers, clinical investigators, and others involved with the science of the disease. Not so long ago, even a seat at the table – much less a vote –was hard to come by. Advocate presence was met with puzzlement, if not outright resistance. How could we possibly understand th...

Injury research advocacy a high priority.

Research Advocacy: Why Every Scientist Should Participate

In the United States, a generation and more has passed since widespread sustained political involvement by students in the affairs of the nation, such as the movement to oppose the war in Vietnam. Today’s students and post-doctoral fellows have no first-hand memory of broad, organized efforts to convince the government that represents them to shift its priorities significantly. This has present...

Disease advocacy organizations catalyze translational research

Disease advocacy organizations have long played an important role in the continuum from basic science to therapy development in rare disease research. PXE International has led the field in innovative ways, venturing into specific activities that have traditionally been conducted by scientists. As lay founders, we have engaged in gene discovery, gene patenting, diagnostic test development, epid...

Cancer research advocacy: past, present, and future.

In this article, we present a brief history of cancer advocacy and discuss the variety of ways advocates have become involved in cancer research and subsequently present principles that establish a framework for successful research advocacy based on a review of many early initiatives coupled with our knowledge as long-time cancer advocates. Challenges to effective advocacy are described, and re...