JCI understands that transforming clinical research calls for collaboration and outreach extending beyond the detailed matters of data capture and trial design. That’s why we’re proud to engage in ambitious partnerships within the medical and scientific communities and with patients to promote and enhance the benefits of clinical research.
Patient Data Access Initiative (PDAI)
In this era of patient empowerment and decentralized and socialized communication channels, advocacy groups and health authorities alike have become increasingly sensitized to the desire for patients to assume ownership of the data they help generate.1 Accordingly, JCI is playing a pivotal role in Janssen’s participation in the Patient Data Access Initiative (PDAI), a group of pharmaceutical companies collaborating to share their respective research experience to support pilot initiatives designed to responsibly return certain clinical trial data to patients who have participated in sponsor trials. Working with a group of organizations and individuals dedicated to this cause, PDAI is actively exploring how to share this information more broadly to help encourage more sponsors to share appropriate patient study data with study participants with full and clear context.
Journey to Better Health – A First-Of-Its-Kind Mobile Exhibit
Diversity in clinical trials is essential to the development of targeted and effective new medical treatments – and Janssen is committed to raising awareness of clinical research to all community members, particularly the underserved populations, to ultimately improve health outcomes for patients. For example, in 2018, JCI in partnership with Center for Information & Study on Clinical Research Participation (CISCRP) and Wondros, designed a travelling exhibit on clinical research and brought it to large public-facing community events in Los Angeles.
Journey to Better Health, winner of a 2019 EyeforPharma award in the competitive Most Valuable Educational Initiative category, is a customized recreational vehicle (RV), featuring interactive educational displays about the clinical research process and how it has advanced medical knowledge, multi-lingual ambassadors to answer questions and guide visitors through the RV, and materials providing next steps for individuals interested in evaluating clinical research options in their communities.
In 2019, Janssen partnered with CISCRP to bring the Journey to Better Health mobile pop-up exhibit to three metropolitan cities. In addition, Janssen has committed to an educational consortium composed of 10 CISCRP-championed companies that will organize five AWARE for All: Clinical Research Education events per year for the next five years (2020 – 2025).
1 Vanaken. H. PhD, Ir, MsC. (2019, January) Patient Data Access in Clinical Trials [Conference presentation]. Patients as Partners Europe (Patients EU) 2019, London, England, United Kingdom. https://theconferenceforum.org/wp-content/uploads/2019/01/PatientsEU2019_HildeVanaken_DataReturn.pdf