Recognizing the Medical Heroes Who Participate in Clinical Trials
Advocacy Behind every medicine and available treatment are the people who gave the extraordinary gift of participation in clinical trials.
Did You Know?
- 83 percent of people have heard the term “clinical research study” or “clinical trial” and feel that they understand the term well.
- However, people only have a basic understanding…
- 6 out of 10 people (62 percent) cannot name an agency that oversees clinical research safety, and half (51 percent) do not know where clinical research is conducted.. (2)
- Close to half (52 percent) of people who have participated in a clinical trial considered the medical care they received during the trial to be better than the routine care they received from their regular doctor. (3)
- The top two things people liked most about their clinical trial participation was helping to advance science and medical treatments and helping others who have the same disease or condition as themselves. (3)
- Almost all people (94 percent) who have participated in a clinical trial report that they would be willing to participate again, and a similar percentage would recommend participation to others. (3)
Since 2013, CISCRP has conducted a perceptions and insights study every two years among the public and patient communities. Trends and insights from this large global study help identify better ways for the public, patients and clinical research professionals to work together to develop and investigate new and much-needed medical treatments.
Data: CISCRP Perceptions & Insights Study 2017
- Sample size: 10,843 –those reporting they had heard of the term “clinical trial” or “clinical research”
- Sample size: 8,920 –those reporting they understood the term “clinical trial” or “clinical research” well
- Sample size: 2,194 –former study participants
Around the world people are living longer, healthier and happier lives because of the millions of volunteers who participate in clinical trials each year. We call these brave individuals “medical heroes.” Medical heroes are parents, siblings, children, friends and community members who have chosen to participate in clinical trials.
Hope for future generations
The decision to participate is a courageous and selfless act because it always carries risk and is unlikely to bring any direct personal benefit. Participation in a clinical trial often gives hope to patients and their loved ones, but, ultimately, the direct recipients of the gift of participation are those who will be managing their disease or illness in the years to come. Future generations benefit from the new knowledge about the nature of their disease, its progression and how to treat it.
For the vast majority of people, the idea of participating in a clinical trial is new. Most stumble upon clinical trials when faced with the sudden and often unexpected prospect of a serious and debilitating illness for which no medication is available or adequate. Typically, patients and their families, friends and health care providers must gather information quickly to make decisions about whether they should participate in a trial. This rush to navigate the unfamiliar terrain of clinical trials invariably feels overwhelming and confusing.
In 2004, the Center for Information and Study on Clinical Research Participation (CISCRP) was founded to provide outreach and education to those individuals considering participation in clinical trials. Based in the Boston area but with a global reach, this nonprofit organization focuses its energy and resources on raising general awareness, on educating patients and the public and on enhancing volunteer experiences during and after clinical trial participation.
Today nearly 4,000 experimental drugs and therapies are in active clinical trials. That number continues to grow as improvements are made in detecting disease, in discovering new medical innovations and in understanding and addressing the root cause of acute and chronic illnesses.
At the very heart of this exciting period of life-saving and life-altering research are the medical heroes to whom we owe our deepest appreciation for the profound gift of their participation.