Lack of awareness of clinical trials is among key factors contributing to low participation rates throughout the country, according to a panel of experts at a Capitol Hill briefing in Washington, D.C. hosted by the Coalition for Clinical Trials Awareness on May 3. David Charles, M.D., chair of The Alliance for Patient Access, said more people would enroll if they knew about trials, adding that a sustained national public awareness campaign supported by the public and private sector might fill knowledge gaps. He suggested the creation of a task force of key stakeholders that would make recommendations on ways to elevate awareness.
Data quality improvements, transparency and diversity in trials are among the priorities for the Food and Drug Administration (FDA) in efforts to boost enrollment, said Jonca Bull, M.D., assistant commissioner for minority health, Office of the FDA Commissioner. “Patients in trials should reflect the patients who receive these new drugs,” she said, noting that access to trials is a barrier for many segments of the population. “We must bring the trials to patients and span the pool of investigators,” she said.
The panel agreed that altruism is a motivating factor for clinical trial participation. Sara Chang, director of policy and advocacy, Research!America, said survey results show a majority of Americans say improving the health of others would be an important consideration in deciding whether to enroll in a trial. She added that many respondents are also willing to share their personal health data to advance medical research, in surveys commissioned by Research!America.
Renata Louwers, a former caregiver whose husband died of mestastatic bladder cancer, said there’s a “shortage of help for people trying to find a trial.” She suggested that patients should have someone available to “guide them through the process.” Guest speaker Representative Diana DeGette (D-CO-01) said she introduced bipartisan legislation that would provide support to clinical trial patients with psychological and social distress.