The new participant-centered methodology optimizes and humanizes technology to accelerate research with real-world data shared from lived experiences
SAN DIEGO, Nov. 3, 2022 /PRNewswire/ -- LunaPBC today announced the launch of Community Driven Innovation™ (CDI), a participant-centered methodology that improves upon techniques like Delphi, design thinking, and social choice theory to deliver -- in weeks versus years -- an unbiased understanding of group priorities, a hierarchy of values, and pain points.
Luna and collaborators will be discussing the impact of CDI as a tool for listening to and engaging with patient communities during several talks at the annual meeting of the American Public Health Association Nov. 6-9.
CDI addresses long-standing problems with traditional research approaches by eliminating groupthink bias, reducing cost and time -- especially associated with focus group approaches -- and delivering outputs that can seamlessly flow into studies and clinical trials with fewer or eliminated subsequent approval steps by an Institutional Review Board (IRB). Additionally, the methodology's iterative process is designed for longitudinal data capture so steps can be reinitiated as experiences and environments change over time.
CDI has been applied to research projects by KCNT1 Epilepsy Foundation, PXE International, The Aicardi Goutières Syndrome Advocacy Association, and Bobby Jones Chiari & Syringomyelia Foundation, and as the engagement foundation of studies with the Veterans' Health Priority and Women's Health Priority communities, where women identified migraines and severe headaches as one of their top priorities.
"We deployed CDI in the Migraine and Severe Headache Study alongside a standardized and well-validated Health Impact Test (HIT-6) to better understand the extent to which migraines and headaches impacted the lives of individuals," said Mark Kosinski, Chief Commercial Science Officer and Senior Scientist at QualityMetric. "The data revealed that three out of four individuals participating in this study reported severe impairment in physical, social, role, emotional, and cognitive functioning due to their headaches, at a level seen in uncontrolled chronic migraine patients, some of whom were on treatment for migraine. The implication of this finding is that a significant unmet clinical need exists with current migraine treatments."
The CDI methodology optimizes and humanizes technology and techniques to uncover a community's or cohort's true priorities from the voices of all individuals so that problem solvers can forecast needs, design research, and develop solutions aligned to the specific, underserved outcomes that matter most. CDI enables researchers to make informed decisions on the goals of their studies and trials to ensure the participants' most valued outcomes on an accelerated timeline.
Founded in 2017, LunaPBC is a public benefit corporation headquartered in San Diego, California. The team, investors, and advisors are renowned in the patient-advocacy, health, and science fields. With participation from over 180 countries and communities advancing causes including disease-specific, public health, environmental, and emerging interests, Luna's tools and services empower these collectives to gather a wide range of data -- health records, lived experience, disease history, genomics, and more -- to advance research that addresses their unique health needs. Luna makes research representative of the real world and aligned with people's true goals by giving all participants a role from right where they are. For more information, visit LunaDNA.com.