Share

Research reveals what people think about participating in a clinical trial

thehealthexchange.org gives people the voice they are seeking in the clinical trials process

PHILADELPHIA, PA (March 6, 2001) – Lack of awareness and knowledge are key barriers preventing patients from enrolling in clinical trials, according to new consumer research conducted by thehealthexchange.org, an Internet company devoted solely to patient education, recruitment and placement for clinical trials. The research shows that individuals go through a multi-stage decision making process when considering trial participation and are motivated by a desire to improve their own health.

thehealthexchange.org conducted focus groups and one-on-one interviews with chronically ill individuals and their family members, and a telephone survey of 500 Internet users to determine their willingness to participate in clinical trials.

“A lack of awareness and knowledge about clinical trials among the public has resulted in negative misperceptions, such as a belief that participants are treated as ‘guinea pigs’ or that only the desperately ill with no hope of survival participate in clinical trials,” said Victor Imbimbo, co-founder and chief executive officer of thehealthexchange.org. “Our research shows that the decision-making process for determining whether or not to participate in a clinical trial is a step-by-step process driven primarily by a desire for information about a disease or condition and a hope that a better quality of life and longer life may be achieved.”

thehealthexchange.org research indicates that is an acceptance process that includes a variety of steps, including: achieving greater awareness and knowledge of clinical trials; establishing a feeling of familiarity and trust with trial procedures and sponsors, and providing a sense of hope that participation in clinical trials may improve health outcomes. After all these steps are achieved, participation becomes more probable.

According to Charles H. Hennekens, M.D., DrPH, formerly Professor of Medicine at Harvard Medical School, Chief of Preventive Medicine at Brigham and Women’s Hospital, a leading authority on clinical trials, and Chair of thehealthexchange.org’s Clinical Trials Advisory Board, “The research demonstrates that there is clearly a gap in patient knowledge about clinical trials. thehealthexchange.org’s mission is to bridge that gap by ensuring that consumers are informed, that their voices are heard, and that their needs are met.”

Other findings from the research include:

• More than half (56%) of Internet users surveyed say they do not know a lot or a fair amount about clinical trials
• Almost half (46%) of all Internet users say they use the Internet to search for health information.
• More than half (57%) of online users say chat rooms where study participants can talk with other people with the same or similar illnesses would be a desirable feature on an Internet recruitment site.
• In addition to talking to others experiencing the same illness or disease, chronically ill patients say they want greater access to health professionals. Almost 9 in 10 (86%) Internet users believe interactive access to healthcare professionals should be available on a recruitment site.
• Chronically ill focus group participants express a desire for more information about their condition in general, including information about clinical trials.
• Among chronically-ill patients, the process of finding information about their illness is often a source of frustration. Typical complaints associated with the process of trying to find information include: confusion due to an abundance of sources that make finding information too overwhelming and time consuming; a lack of consumer-friendly information that is non-technical and easy to understand; and an inability to locate information that will actually help them/their loved ones manage their illness.

thehealthexchange.org offers an easy, convenient, confidential place for individuals to learn about, locate, and apply for clinical trials. The service was designed based on research with consumers, which has resulted in the development of a consumer oriented site that provides an environment that is informative, supportive, and confidential. The site can be found at www.thehealthexchange.org.

In response to this need to provide consumers with a comprehensive resource to engage in this step-by-step learning and decision-making process, thehealhexchange.org has developed a convenient, centralized source of information where consumers can gather information about their disease or illness; search for clinical trials that may be relevant to them; or actually apply to participate in a clinical trial. The philosophy driving the overall design of the site is that each user decides if and when he or she is ready to progress to the next step and, when they do, thehealthexchange.org is there to help them on their own timetable.

thehealthexchange.org’s offerings include:

• A community support function that enables people with specific medical interests to communicate with one another.
• Event chats featuring healthcare professionals and specialists discussing a broad range of subjects and conditions.
• A customer tool set, “HomeBase,” for biopharma companies, clinical research organizations, and site management companies. This unique feature provides a private, secured portal which allows companies to maintain complete control over their intellectual property and enables managers to add content and edit their clinical trial listings.

thehealthexchange.org provides the most extensive online clinical trials services, listing approximately 2,500 unique studies spanning a broad range of medical conditions. “We offer the most listings of any online patient recruitment company,” added Mr. Imbimbo.

thehealthexchange.org is headquartered in Stamford, CT. Its technology office is located in Philadelphia, PA.

Share

AAAS and EurekAlert! are not responsible for the accuracy of news releases posted to EurekAlert! by contributing institutions or for the use of any information through the EurekAlert! system.