Volunteer Perspectives: Quincy

Like any 31 year-old father of three, Quincy counts his blessings. Unlike other people his age, however, Quincy has had to deal with more than most. As a 24-year-old college football player, he was diagnosed with chronic myelogenous leukemia (CML) after a routine exam.

At the time of his diagnosis, Quincy’s white blood cell count was about 20 times higher than a healthy adult. After a long struggle he finally got his illness under control, only to relapse in 2011. After he had to receive his second bone marrow transplant, he turned to a clinical trial to aid his recovery. Although Quincy experienced some uncomfortable side effects and had to undergo frequent blood draws and painful bone marrow biopsies, the pills proved helpful.

A few months later, Quincy could finally share the news he had hoped for with his wife and mother- that he was in remission. According to Quincy, “I encourage researchers to raise funds, work long hours, dig deep and make things happen for people like me… I want them to know they need to keep doing what they’re doing and keep patients in mind because we are just like they are. We have families just like they do, and we’re counting on them.”

If you are a patient who wants to share your clinical research experience, please contact us.

Patients & Partners: Spotlight Service

CISCRP created its Speaker’s Bureau to help address the common misconceptions among the public about clinical trials and study participants. Since its creation last year, the bureau has grown to be a worldwide effort with willing speakers located in 47 cities nationwide.

Providing access to experts in the industry is important for engaging audiences about research and careers in the industry, as well as for honoring the role of every individual in the process who contributes to advances in public health.

Our Speaker’s Bureau members have an average of 10 years of experience in clinical research and includes current and former clinical research professionals from the National In-stitutes of Health and major pharmaceutical and bio-technology companies.

Click here if you would like to learn more about joining CISCRP’s Speakers Bureau or to request a speaker.

The Museum Initiative

During the past year, CISCRP has been developing a new educational exhibition that will present the clinical research process through the eyes of volunteers. This exhibition will travel to museums in 12 cities during the course of a 3-year tour, reaching elementary through high school age children and their families. The Medical Heroes exhibition will present authentic stories and voices of volunteers who have participated in clinical trials. Exhibit design is underway and it will focus on three key areas:

  • Meet the volunteers: Visitors will meet real study volunteers through photos, quotes, videos, and social media dialogue, and occasionally in person. In addition, hearing from volunteers participating in a wide range of clinical trials will help visitors to see clinical trials as more than treatments of last resort.
  • Be a volunteer: Visitors will participate in a simple clinical trial and make decisions about participation: for example, using a blood pressure cuff to record their heart rate before and after doing jumping jacks. Multimedia exhibits will enable visitors to play the role of friend and adviser to volunteers who are figuring out what questions to ask and making decisions about participation.
  •  Discover the impact of participation: multimedia presentations will bring home the impact of participation by reporting on study results of well-known studies and connecting the dots between clinical trial participants and someone who directly benefited from the results of that participation.

CISCRP’s First Perceptions & Insights Seminar

CISCRP’s first Public and Patient Perceptions & Insights Seminar took place on February 12th at the One Financial Conference Center in Downtown Boston. More than 30 clinical research professionals attended the half-day interactive forum to discuss the results of CISCRP’s global study assessing public and patient attitudes and perceptions about clinical research. This study has generated considerable interest in the research community, and discussions at the seminar focused on the study volunteer experience and the importance of engaging patients as partners in clinical trials.

The program was sponsored by inVentiv Health, moderated by CISCRP’s Board Chairman and Founder Ken Getz, and hosted by Rebecca’s Café. inVentiv Health’s Jim Kremidas also led a presentation about how industry professionals can better tailor their outreach to reflect the differing needs and preferences of patient groups.

With these seminars, CISCRP and inVentiv Health hope to amplify the voices of patients to encourage discussion among the research community and ultimately improve the participation experience for volunteers. View the 5 reports from CISCRP’s study and contact us for more information about the Perceptions & Insights series, or about hosting a seminar.

Inaugural Medical Heroes Appreciation 5K

Partnership with DIA to honor People Who Give the Gift of Participation in Clinical Research

We are thrilled to announce the launch of a new event — the Medical Heroes Appreciation 5K Run and Walk in San Diego — to celebrate the volunteers who give the gift of participation in clinical research. The walk will coincide with the Drug Information Association’s (DIA) 50th Annual Meeting. It will take place Monday, June 16, 2014 outside the San Diego Convention Center from 6:45-8:00am. Participants are encouraged to register online at www.ciscrp.org/med-hero-5k.

“Medical Heroes are the millions of people who help advance public health and medical knowledge by taking part in clinical trials each year,” explains CISCRP’s founder, Ken Getz. “This special event recognizes their gift, raises public awareness and appreciation, and hopefully will become an annual tradition.”

Running and walking enthusiasts and all supporters of CISCRP’s mission are invited to participate or attend the event to show their support. Proceeds from the event will support education and outreach programs for patients and families interested in learning more about the clinical research process.

Patients & Partners: Spotlight Product

Since 2004, CISCRP’s diverse library of videos has helped educate countless patients and their families considering participation in a clinical trial.

With eight different titles varying from a general introduction to clinical research to disease-specific titles aimed at minority audiences, CISCRP’s videos use culturally appropriate language to describe the trial process interspersed with firsthand patient accounts.

Available in a DVD format, as well as in an MP4 digital download for-mat, CISCRP’s DVDs make a great resource that sites around the world have purchased to lend out and even give out to their partici-pants. Many sites even purchase multiple titles to play in their waiting rooms. Pricing for our videos starts at $9.99 per copy, with quantity discount rates available. Click here to preview the Participating in a Clinical Trial video.

New CISCRP Study Reveals Improvements in Public Perceptions of Clinical Research and Insights Into Patient Participation Experiences

A new global study recently conducted by the Center for Information & Study on Clinical Research Participation (CISCRP), a Boston-based independent nonprofit, indicates that public trust and perceptions about clinical research and the people who participate in them have shifted and improved significantly during the past seven years.

The study, conducted online between January and March 2013 among a global community of health information seekers and clinical research participants, was designed to track changes in public perceptions and attitudes about clinical research and to gather new insights into study participation experiences. In total, nearly 6,000 people completed the survey making the 2013 Perceptions & Insights study one of the largest international surveys focusing on clinical research ever conducted.

Key findings of the study include:

  • Whereas 45% of the public said that they don’t trust research sponsors to inform the public quickly about safety concerns in 2005, only 28% do so in 2013;
  • In a 2005 Harris Interactive poll, 46% of respondents believed volunteers were gambling with their health by participating in a trial; the new CISCRP survey found only 23% of respondents agreed with that statement;
  • The Internet has now surpassed traditional media (newspaper, radio and television) as the largest source for information although the majority (60%) of study volunteers reports that they have not used social medial to learn about clinical research.
  • A high percentage of patients who were ineligible to participate in one clinical trial decided not to participate at all, instead of searching for other clinical trial opportunities

“It was critical to conduct this new study given the importance the clinical research enterprise now places on implementing truly patient-centered research,” said Kenneth Getz, the lead investigator for the study and the director of sponsored research programs at the Tufts Center for the Study of Drug Development (CSDD). “Despite the clinical research enterprise’s desire to better understand and engage patients, no large scale assessment of public and patient attitudes and perceptions had been conducted in more than seven years” said Getz.

CISCRP plans to conduct the international poll every other year to monitor and track changes in both public opinion about, and patient experiences participating in, clinical research. CISCRP has produced a series of reports containing detailed results of the 2013 Perceptions & Insights Study. These reports can be downloaded at www.ciscrp.org.


About CISCRP

The Center for Information and Study on Clinical Research Participation (CISCRP), founded in 2003, is a non-profit organization dedicated to educating the public and patients about the important role that clinical research plays in advancing public health. As part of its mission, CISCRP provides a variety of services designed to assist clinical research stakeholders in (1) understanding public and patient attitudes and experiences and (2) improving volunteer participation experiences and satisfaction.


Contact 

Laura Mercure
Marketing Manager
617-725-2750
LauraMercure@CISCRP.org