ResearchMatch on FHIR: Development and evaluation of a recruitment registry and electronic health record system interface for volunteer profile completion.

Background: Obtaining complete and accurate information in recruitment registries is essential for matching potential participants to research studies for which they qualify. Since electronic health record (EHR) systems are required to make patient data available to external systems, an interface between EHRs and recruitment registries may improve accuracy and completeness of volunteers' profiles. We tested this hypothesis on ResearchMatch (RM), a disease- and institution-neutral recruitment registry with 1357 studies across 255 institutions. Methods: We developed an interface where volunteers signing up for RM can authorize transfer of demographic data, medical conditions, and medications from the EHR into a registration form. We obtained feedback from a panel of community members to determine acceptability of the planned integration. We then developed the EHR interface and performed an evaluation study of 100 patients to determine whether RM profiles generated with EHR-assisted adjudication included more conditions and medications than those without the EHR connection. Results: Community member feedback revealed that members of the public were willing to authenticate into the EHR from RM with proper messaging about choice and privacy. The evaluation study showed that out of 100 participants, 75 included more conditions and 69 included more medications in RM profiles completed with the EHR connection than those without. Participants also completed the EHR-connected profiles in 16 fewer seconds than non-EHR-connected profiles. Conclusions: The EHR to RM integration could lead to more complete profiles, less participant burden, and better study matches for many of the over 148,000 volunteers who participate in ResearchMatch.

"Send My Information": Increasing public accessibility to clinical trials by facilitating participant expression of interest.

Introduction: The process of identifying and connecting with clinical trial study teams can be challenging and difficult for members of the public. The national volunteer community registry, ResearchMatch, and the public clinical trials search tool, Trials Today, work in tandem to bridge this connection by providing a streamlined process for potential participants to identify clinical trials which may be of interest. Methods: Building on the existing infrastructure of ResearchMatch and Trials Today, we created a mechanism by which the public can request that their basic contact information (e.g., email/phone) be securely shared with any actively recruiting clinical trial, including trials with no existing relationship with ResearchMatch. Results: Within the first 2 years of use (July 2019-July 2021), ResearchMatch Volunteers sent 12,251 requests to study teams. On average, 20% of these requests were accepted by the study teams. Conclusions: The utilization of this tool indicates that there is active interest among members of the public to independently contact study teams about trials of interest. Additionally, research teams unaffiliated with ResearchMatch are willing to at minimum accept contact information. This allows ResearchMatch to successfully serve as a medium, connecting members of the public with actively recruiting trials.