Enrolling in a clinical trial is a courageous decision. Research volunteers often take on a significant amount of inconvenience and burden in order to participate. And, unfortunately, they are rarely thanked enough for their contributions to modern medicine. The Center for Information & Study on Clinical Research Participation (CISCRP) notes that many participants report feeling "no longer valued" by research staff after the conclusion of their trial.
To help give clinical trial participants more of the recognition they deserve HealthiVibe, Partners in Research, the I'm In Campaign, the Coalition for Clinical Trials Awareness, and PhRMA have planned a series of activities to take place during Clinical Trials Awareness Week (May 4 - 8).
There are three ways you can help celebrate clinical trial participants and bring awareness to clinical research:
- Give a shout out to a clinical research hero through social media using the hashtag #iCHEER4u
- Log on to the Clinical Trial Participation Google Hangout on May 6 from 3:00 - 3:30 p.m. Eastern Time.
- Participate in the Clinical Trial Awareness Week tweet chat on May 7 from 2:00 - 3:00 p.m. Eastern Time. Use the hashtag #CTAW.
To help bring more visibility to clinical research participants, we're encouraging people to give out virtual awards via social media through the C.H.E.E.R. campaign. Sponsored by HealthiVibe, C.H.E.E.R. stands for "Clinical Heroes Educated and Engaged in Research." The purpose of the campaign is to "give a big round of applause to all of the brave volunteers who have gone before us and paved the way, allowing the rest of us to have better health care and quality of life."
To participate, print out an 8.5" x 11" version of the certificate on the right, write your research hero's name on it, take a picture of yourself holding the certificate, and post it to your favorite social media sites along with the hashtag #ICHEER4U. (Click on the image to get the full-sized version.)
This is not only a great way to bring attention to individuals who have contributed to medical breakthroughs, but also a way to raise general awareness of clinical research. Overall percentages of patients who are aware of clinical trial as an option continues to be low. "Humanizing" the concept of clinical research by focusing on actual people who have participated, may have the power to resonate more than any other type of messaging campaign. As much as possible, patients should be at the center of clinical trial design and at the center of public conversations about participation.
"Participating in Research" Google Hangout
As part of the C.H.E.E.R. campaign, HealthiVibe will host a Google Hangout featuring a series of short presentations on clinical trial participation. The presentations will be followed by a question and answer session. I'm honored to be presenting along with T.J. Sharpe, cancer survivor and clinical trial participant; and Jessica Petroff, a multiple sclerosis clinical trial participant.
I'll share how some pharma are working to make the clinical trial experience more patient friendly. We live in a time of amazing technology advances. These technologies, such as mobile devices, can help make it easier for people to participate in trials during the course of their day-to-day lives, as well as enable new trial support services.
Check out the Google Hangout event page for more details.
In an earlier blog post, Lilly Clinical Innovation Advisor Joe Kim reminded us that "One of the simplest but perhaps most overlooked things we can do for patients is to take the time to say thank you." Without their help, advances in drug development simply would not be possible. We have to do a better job of helping patients feel appreciated and feel connected to the larger impact their contributions have on improving the lives of patients.
Making the overall clinical trial experience better, and letting people know how much their participation means to people living with chronic illnesses and other conditions, may be one of the keys to increasing awareness of clinical research overall. More awareness may lead to more participants, which could lead to finding better treatments, faster. So, take the time this week and next to C.H.E.E.R for a clinical trial volunteer.