ABSTRACT
BACKGROUND: Survey data has suggested a gap between individuals willing to participate in a clinical trial and those who enroll. Clearer research must be done to better understand this discrepancy and the accessibility of patient-desired information, such that steps can be identified to assist sponsors in empowering patients to drive their own clinical trial search journey. METHODS: Patients, sponsors, and health care professionals were engaged through surveys and advisory boards to determine the ideal information for sponsors to provide during a clinical trial search. Public registries were analyzed to assess availability of basic investigator and site contact location information. RESULTS: Data reiterated the need for patients to have easy and unambiguous methods of connecting with the clinical trial site. Analysis of data on registries prove that sponsors have the opportunity to better utilize contact information on databases to enable a patient's clinical trial search journey. CONCLUSIONS: More robust disclosure of site location and contact details on public registries could lay the foundation for a more user-friendly clinical trial search. Allowing sites autonomy in site contact methods while promoting accessibility will facilitate the connection of interested patients with appropriate trial opportunities.
ABSTRACT
BACKGROUND: Researchers are increasingly motivated to move toward patient-centric drug development. TransCelerate has identified improved "information exchange" as an important component of creating a more satisfying clinical trial experience for patients and their health care professionals (HCPs). METHODS: Patients, sponsors, sites, and HCPs were engaged through surveys, interviews, and/or advisory boards to capture the current status of information exchange and identify possible future practices between the major stakeholders within the clinical research ecosystem. RESULTS: Data suggest that patients have numerous desires and preferences for information exchange during their clinical trial journey that are not commonly met. Various opportunities exist to improve the clinical trial participants' experiences by improving information exchange practices across various stages of the participant's journey. CONCLUSIONS: A shift in industry focus toward more comprehensive information exchange with trial participants has the potential to positively impact many patients.
