Conversations and healthy debate about issues facing our industry and the health care system are critical to addressing some of today’s challenges and opportunities. The Catalyst welcomes guest contributors, including patients, stakeholders, innovators and others, to share their perspectives and point of view. Views represented here may not be those of PhRMA, though they are no less key to a healthy dialogue on issues in health care today.
We are pleased to share a blog post from The Alliance for Aging Research.
It’s an exciting time in biomedical research, and the news is filled with stories of breakthrough discoveries that have the potential to save and change lives. These stories give us hope that, when we or our loved ones face illnesses, these discoveries will have brought us new treatments and cures.
But people aren’t always volunteering for the clinical trials that are essential to getting those treatments to patients. According to a 2013 study from the Tufts Center for the Study of Drug Development, 37 percent of clinical trials failed to meet their enrollment goals, while 11 percent didn’t enroll a single patient.
Many factors lead to under-enrollment—especially of older adults. For starters, many trials include age limits, which can end up excluding patients who may benefit from these treatments.
Older adults are often excluded because of clinical considerations and research challenges. They may have comorbidities that complicate assessment of trial outcomes, challenges with cognition that impact reporting and informed consent, mobility issues or supportive care needs, physiological changes that impact absorption and metabolism of medications, and multiple concomitant medications that can confound research results and make patients more prone to adverse effects.
Beyond eligibility issues, volunteers are scarce. Only 10 percent of Americans have participated in a clinical trial. A 2003 Journal of Clinical Oncology study revealed that 40 percent of adults lack an understanding of clinical trials. But there’s also tremendous opportunity, because that same study found that 32 percent of adults would consider participating if they had a better understanding of clinical trials.
In an effort to raise awareness about clinical trial under-enrollment and the value of participation, the Alliance for Aging Research in partnership with PhRMA, recently released a short video on clinical trials—“Pay it Forward: Volunteering for Clinical Trials” that gives an overview of how clinical trials work; why they are important for individuals, family members, and society; how to find a trial; and what to expect when volunteering.
The pocket film addresses many of the misconceptions and barriers that lead to under-enrollment. One serious misconception is that clinical trials are reserved only for those who have exhausted all other options. Additional barriers such as distrust of the science, fear of risk factors and side effects, transportation and financial difficulties, or simply not knowing how to find a trial all can keep people from volunteering.
Americans also do not always recognize or appreciate the individual and societal value of clinical trials. A 2006 survey from the Center for Information & Study on Clinical Research Participation asked the public who made a greater contribution to society—40 percent said organ donors, 29 percent said blood donors, 10 percent said people who raise money for charity by running a race, and only 9 percent said clinical trial participants.
The film explains this value and shows viewers that by “paying it forward” through participation in clinical trials, individuals can benefit scientific research both now and in the years to come. Participating in clinical trials should be a conversation everyone has with their health care professionals, their families, and themselves.
Lindsay Clarke is vice president of Health Programs at the Alliance for Aging Research in Washington, D.C.