Guest Expert: Ken Getz - Center for Information and Study on Clinical Research Participation (CISCRP)
Originally posted by: Ellen Richmond, AccrualNet Co-Moderator, on the former AccrualNet site on May 02, 2011.
We are very pleased to welcome our guest expert, Kenneth Getz, to AccrualNet Conversations. Ken, a Senior Research Fellow at the Tufts Center for the Study of Drug Development, is the chairman of CISCRP (http://www.ciscrp.org/) – a nonprofit organization that he founded to educate and raise public awareness of the clinical research enterprise. Considered an expert on the global investigative site and CRO markets, R&D management strategy and practices, and study volunteers trends and policies, he has authored two books, ten book chapters, and more than 150 articles in peer-review and trade journals. Ken also serves on several boards, including the Clinical Trials Transformation Initiative (https://www.trialstransformation.org/)
Ken Getz's Post:
I’m often asked if the purpose of public clinical research education and outreach is to fill clinical trials. My response is a resounding ‘No’. The goal of public education and outreach — and the mission of my nonprofit Center for Information and Study on Clinical Research Participation (CISCRP) http://www.ciscrp.org— is to raise awareness about clinical research; to inform the public and patient communities so that they can make educated decisions about clinical research; to engage the public and patient communities as active partners in the clinical research enterprise.
I have no doubt that in supporting effective public education and outreach, ultimately we will improve patient recruitment and retention rates. Let me suggest a couple of concrete ways that this is actually happening. AWARE for All is a unique one-day educational program that puts a face on the people who volunteer for clinical trials while raising public understanding of the risks and benefits of participating. When asked whether they are more or less likely to participate in a clinical trial after attending AWARE, 75% of attendees say that they are “more likely.” And nearly all of the research center staff attending the AWARE program report that following each AWARE program they receive inquiries from patients interested in participating.
Last November, CISCRP offered AWARE in a new webcast format as National Clinical Research Education Day – with 25 sites across the US. And CISCRP has two more National Awareness Days scheduled for 2011 (June 15 and October 15) with 100 research centers expected to join us across the US and Canada. We encourage other research centers to host this event and invite their patients, their families and caregivers to attend.
CISCRP recently launched a new and comprehensive program to assist sponsors in communicating study results to volunteers post participation. Typically, study volunteers never hear from the sponsor or study staff after participation has ended. This sad situation has left many study volunteers feeling that their participation was neither valued by the research community nor valuable to future patients. CISCRP’s new program begins communication when the patient finishes the trial and continues beyond when the results are published on www.clinicaltrials.gov . The program has been very positively received by patients and study staff. Many patients have expressed feeling more connected to the clinical research community and wanting to share their experiences with new study volunteers. Several clinical research sponsors are now working with CISCRP to routinely communicate clinical trial results to their study volunteers.
When we provide ongoing public education and outreach, we improve the image and understanding of the clinical research enterprise; and most importantly, we engage the public and patient communities as active partners in the clinical research process.