title: The Value of Clinical Trials from a Patient Perspective.
abstract: Clinical trials are essential in developing new treatments, care, and prevention for people with cancer. Unfortunately U.S. accrual rates for adult cancers are approximately 2-3%, partly due to the way the clinical trial system operates. Breast cancer patient advocates know enrollment has to accelerate to translate the many new scientific discoveries into effective use. Most newly diagnosed women, however, know nothing about clinical trials or why to consider them. The way a woman is approached about clinical trials can create fear and misunderstanding during a time when her body puts her into a physiological state of shock. These misunderstandings exacerbate the situation, and can lead to mistrust that will taint future medical interactions if they are not assuaged immediately. Many women, family members, and friends want to investigate clinical trials, but have no guide to help them through this daunting process. They have to contact many sources, decipher medical jargon, find a "clinical trial doctor," and fight for insurance coverage. It is time for new approaches that make sense to patients. Clear information that helps people understand the value of research studies must also be presented in caring ways that reinforce the support people seek during crisis. Working together, cancer patient advocates and cancer researchers can provide this kind of useful information. The Clinical Trials Information Project (CTIP), a nonprofit organization established by patients and family members, has introduced a new approach through the CTIP Breast Cancer Kit
authors.affiliation: Patient Advocates In Research, Clinical Trials Information Project, and UCSF San Francisco Advocacy Core, San Francisco, California.
authors.forename: Deborah E.
authors.initials: DE
authors.lastname: Collyar