Empowering people to make informed decisions about their health

Jul 27, 2018
Empowering people to make informed decisions about their health

The more people understand clinical research the more empowered they will feel to make informed decisions about their health.

That’s the ethos behind the Center for Information & Study on Clinical Research Participation (CISCRP), which celebrated both Clinical Research Awareness Week and International Clinical Trials Day in May.

“A very high percentage of the public cannot name a place where clinical trials are conducted and most say they wouldn’t know what to do if they needed to find and evaluate clinical trials to aid in their decision to participate. Through our educational and outreach programs, CISCRP and our organizational partners work to build greater awareness and understanding of the clinical research process and the important role participation plays in advancing public health.” said Ellyn Getz, Senior Manager of Development and Community Engagement for CISCRP.

Honoring study volunteers – or Medical Heroes – and raising awareness about their gift of participation

CISCRP raises awareness and provides education about clinical research every day of the year, but the team featured a special social media campaign and event as a part of Clinical Research Awareness Week 2018.

CISCRP’s social media campaign offered “BITS” throughout the month of May. BITS stands for Benefits, Infographics, Trials and Stories. The latter featured stories from Medical Heroes – people who have participated in clinical research studies.

New for 2018 was a 2-week-long, LA-wide tour of CISCRP’s new, interactive “Journey to Better Health” mobile unit. The RV’s goal was to educate diverse communities about the clinical research process, and it was full of information in English and Spanish. The tour culminated in a free educational program at USC with free health screenings, food, panel discussions with research professionals and study volunteers, special remarks from Janssen’s Staci Hargraves and LA Laker Legend AC “Ironman” Green, a ceremony to honor study volunteers, and lots of health-related resources.

“Whenever we host a campaign or a program, we’re working to mobilize communities to get behind a program and our mission. It’s all about generating buzz and excitement – and creating a personal relevance to best understand why clinical research is so important. The mobile unit reached over 750 people during its 10-day span, most of whom had never heard about clinical research but expressed interest in staying engaged and attending the AWARE for All event,” said Ellyn.

All of CISCRP’s educational materials are accessible and completely free to patients and the public.

“We have also developed a number of public service announcements to recognize the contribution of study volunteers,” said Ellyn, adding that CISCRP’s Medical Heroes campaign works to not just raise awareness but also show appreciation to those who participate in clinical research. Twice a year, the organization takes out a full-page advert in USA Today to say “thank you,” and Medical Heroes’ stories are created, published and shared through CISCRP’s quarterly newsletter and on social media.

“During ‘Clinical Research Awareness Week’, it’s exciting to see so many different organizations and groups joining the movement to raise awareness and promote their own educational efforts.”

Education before participation

CISCRP provides a variety of award-winning and internationally recognized educational resources, programs and services, including print and digital materials, media outreach and awareness campaigns, live educational events, study volunteer appreciation programs, patient advisory boards and custom research assessing patient health journeys and study volunteer experiences, and plain language clinical trial results summaries.

And the programs and events run by CISCRP are achieving what they set out to do.

“After each of our campaigns, we see a heightened interest in continuing the conversation – whether that’s through following up with community groups and sponsors who collaborated with us to learn about their own local research programs, filling out our online inquiry form, calling our free clinical trials search service, or subscribing to receive our newsletter and outreach emails,” said Ellyn.

Searchclinicaltrials.org, CISCRP’s free clinical trials search service, links people interested in participating with trials that might be suitable for them by carrying out all the relevant searches on their behalf and connecting them to the research teams. It’s a process that many find overwhelming, and it’s just one example of how CISCRP is breaking down barriers to participation.

“Our fastest growing program is our Communicating Trial Results service, which works with sponsors and investigative sites to fulfill their ethical obligation to provide study results to trial volunteers in an easy-to-understand format. Studies consistently show that most research participants want to know what was learned from their participation, yet most never hear from the sponsor or research site staff after a clinical trial has concluded,” said Ellyn.

Joining the movement

There are many different ways to participate in raising awareness about clinical research year-round. Here are a couple:

  • Follow CISCRP on Social Media to get tools and information
  • CISCRP hosts four to five AWARE for All programs each year – nominate your city, help spread the word about the program, or join in on the virtual conversation.

Everything the organization does boils down to one thing – empowering the public and patients to make informed decisions about clinical research and its role in improving their health.

“Our motto is ‘Education Before Participation.’ The more people understand clinical research the more empowered they will be to advocate for their health,” Ellyn said.

For more information on any of CISCRP’s services, go to www.ciscrp.org

Empowering people to make informed decisions about their health

Author

Ellyn is the Senior Manager of Development and Community Engagement at CISCRP – a nonprofit organization dedicated to engaging the public and patients as partners in the clinical research process. She is responsible for directing CISCRP’s educational and outreach initiatives, including AWARE for All: Clinical Research Education Days, Amplifying the Patient Voice and Perceptions & Insights roundtable discussions, Patient Advisory Panels, and the Medical Heroes Appreciation 5K events. Prior to joining CISCRP, Ellyn worked at College of the Atlantic as a Conference and Events Coordinator and at Brandeis University where she worked in alumni relations coordinating reunion events and development efforts. Ellyn holds a BA in Business Administration and Theatre Arts, highest honors summa cum laude, from Brandeis University.

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