Finalists For 2020 Participant Engagement Award Announced
January 3, 2020 | Finalists have been named for the fourth annual Participant Engagement Award. This year H.E.A.L (Health Education Advocacy Learning), Javara, GRYT Health, Michael J. Fox Foundation, Trial Scout, and Astellas and Bridgeable have been chosen to present their projects during the 2020 Summit for Clinical Ops Executives (SCOPE) in Orlando, Fla., February 18-21. The winner will be named after a live judging session with audience participation.
The Participant Engagement Award highlights creative work across the clinical research industry that helps better engage and understand research participants. Designed to inspire innovation and change in how the industry communicates with participants in the fields of recruitment and retention in clinical trials, this award embodies the values and personal accomplishments of Jerry Matczak, who passed away soon after receiving the 2017 award. The award is dedicated to Jerry in the hopes that it will serve as a reminder of his ideals and accomplishments
David Sall, President of Patient Enrollment Advisors, and one of the co-founders of the awards program, tells Clinical Research News that this year’s competition features projects taking participant engagement in a direction not often seen.
“This year we saw several submissions that focused on engagement with children (and their parents), structuring the communication so that it was engaging for kids and shared information on their level with imagery and language that they could understand,” Sall says via email.
“Technology continues to be an important part of engagement,” he continues, “but as we saw last year with CISCRP [last year’s Participant Engagement winner], sometimes it is about doing the basics really well and truly connecting with people that makes for the most innovative engagements.”
The judges welcomed submissions from every aspect of the industry including sites, CROs, e-patient advisors, agencies, start-ups, and sponsors. Sall says he was happy to see submissions that came from every sector, including non-profits.
Be part of the awards judging on Tuesday, February 18, at the Summit for Clinical Ops Executives (SCOPE). Or follow along on Twitter with #BeLikeJerry and #SCOPE2020.
2020 Participant Engagement Award Finalists
Sickle Cell Disease: A Community Education Conversation
H.E.A.L. conducted a community engagement session that organized minority congregants to increase knowledge about Sickle Cell Disease (SCD) prevalence, disease management, and treatment options. H.E.A.L. engaged with clinicians and advocacy groups to provide clinical information and support services to congregants for disease management. In addition, H.E.A.L. program attendees learned about the importance of diversity in clinical trials, how to find details about current SCD research studies, and how to access principal investigators and clinical trial sites.
The Clinical Trial Navigator: Breaking Down Barriers & Increasing Access for All
With the exception of oncology and rare diseases, clinical trials have generally been disconnected from the care provided by physicians and healthcare organizations. Through implementing strategies that promote clinical research as an innovative care option, Javara is able to see greater engagement across stakeholders, leading to longer term benefits for patients, providers, the healthcare organization, and society as a whole. One of the strategies involves the role of the Clinical Trial Navigator (CTN), who is embedded within the healthcare organization and actively works with the physicians (Principle Investigators), patients, and their care team to ensure there is consistent communication, greater understanding of clinical research, and a reduction of barriers.
The Global Virtual Cancer Conference
On October 5th, 2019, GRYT Health created the first-ever, Global Virtual Cancer Conference. 100% free and 100% online, cancer patients, survivors, caregivers, advocates, providers, researchers and professionals were able to join from any computer, anywhere in the world. The virtual cancer conference was the idea of GRYT's Chairwoman, Shelley Nolden. While enduring 42-days of in-patient treatment at the outset of her APL diagnosis at 32 years old, Shelley struggled to walk past a flyer for a cancer conference on the Leukemia wing. She thought to herself, those 6 years ago, someone needs to create a better model, better access, for patients who can't travel, don't have the finances, are too sick, and those who face anxiety and other psychosocial issues.
Michael J. Fox Foundation
Parkinson’s Clinical Trial Companion
The Michael J. Fox Foundation (MJFF), in collaboration with people with Parkinson’s and leading clinical trialists, developed the “Parkinson’s Clinical Trial Companion”, an open access, two-sided suite of materials aimed at enhancing research participation for the volunteer and researcher communities. The “Trial Participant Pack” (michaeljfox.org/ParticipantPack) for volunteers contains a 52-page guide and three accompanying videos that demystifies research participation through easy-to-follow information and first-person narratives from those conducting and participating in research. To maximize its impact, the “Trial Participant Pack” has been translated into French, German, Italian, Japanese, European Spanish (ES) and U.S. Spanish. For trial sponsors, CROs and clinical sites, the “Trial Resource Pack” (michaeljfox.org/ResourcePack) offers a 46-page manual of field-tested recruitment and retention best practices and eight case studies from leading trialists, along with a 50-item toolkit of customizable templates and how-to guides to support study teams from enrollment through dissemination of results. To help volunteers and research teams get started, both sides of the “Parkinson’s Clinical Trial Companion” encourage use of Fox Trial Finder (foxtrialfinder.org), a free online clinical trial matching technology created by MJFF to connect Parkinson’s research teams with study volunteers.
#FindtheFive: Can active and past clinical trial participants solve the issues that the industry has struggled with for the past 10+ years?
More than five million Americans have participated in some form of clinical research over the last 10 years, yet their voices largely have remained silent - or at least unheard. What if we could find these participants and learn from them to improve awareness and access to clinical trials, ultimately building better experiences for the next five million participants? Using the TrialScout platform (www.trialscout.com), the #FindtheFive social media campaign harnesses the power of the people who make new medicines possible—the individuals who chose to participate in clinical research. By relying on social sharing and word of mouth recommendations, our goal is to engage the millions of historical and active participants in clinical trials to share insights and create a new kind of patient community.
Astellas and Bridgeable
Reimagining the Pediatric Assent Process
The pediatric assent process is a fragmented arena that is not standardized and harmonized in the same manner as the adult consent process. However, it plays an important role in demonstrating respect for a child participating in a clinical trial and providing age-appropriate educational content regarding study procedures. Astellas, with the support of an award-winning design team at Bridgeable, set out to create a new communications capability to deliver best-in-class pediatric assents to foster an improved experience for pediatric patients and their parents/caregivers, while supporting internal stakeholders with the assent development process. Through an approach including in-depth interviews, collaborative prototyping, testing, and iterative reviews, three age-appropriate templates were developed that are creative and engaging, , while respecting legal and regulatory guidance.