Early experience with an opt-in research register - Scottish Health Research Register (SHARE): a multi-method evaluation of participant recruitment performance

Background Recruiting participants to a clinical study is a resource-intensive process with a high failure rate. The Scottish Health Research Register (SHARE) provides recruitment support service which helps researchers recruit participants by searching patients’ Electronic Health Records (EHRs). The current study aims to evaluate the performance of SHARE in participant recruitment. Methods Recruitment projects eligible for evaluation were those that were conducted for clinical trials or observational studies and finished before 2020. For analysis of recruitment data, projects with incomplete data were excluded. For each project we calculated, from SHARE records, 1) the fraction of the participants recruited through SHARE as a percentage of the number requested by researchers (percentage fulfilled), 2) the percentage of the potential candidates provided by SHARE to researchers that were actually recruited (percentage provided and recruited), 3) the percentage of the participants recruited through SHARE of all the potentially eligible candidates identified by searching registrants’ EHRs (percentage identified and recruited). Research teams of the eligible projects were invited to participate in an anonymised online survey. Two metrics were derived from research teams’ responses, including a) the fraction of the recruited over the study target number of participants (percentage fulfilled), and b) the percentage of the participants recruited through SHARE among the candidates received from SHARE (percentage provided and recruited). Results Forty-four projects were eligible for inclusion. Recruitment data for 24 projects were available (20 excluded because of missingness or incompleteness). Survey invites were sent to all the eligible research teams and received 12 responses. Analysis of recruitment data shows the overall percentage fulfilled was 34.2% (interquartile 13.3–45.1%), the percentage provided and recruited 29.3% (interquartile 20.6–52.4%) and percentage identified and recruited 4.9% (interquartile 2.6–10.2%). Based on the data reported by researchers, percentage fulfilled was 31.7% (interquartile 5.8–59.6%) and percentage provided and recruited was 20.2% (interquartile 8.2–31.0%). Conclusions SHARE may be a valuable resource for recruiting participants for some clinical studies. Potential improvements are to expand the registrant base and to incorporate more data generated during patients’ different health care encounters into the candidate-searching step.

What do stroke survivors’ value about participating in research and what are the most important research problems related to stroke or transient ischemic attack (TIA)? A survey

Background Recruitment to stroke clinical trials is challenging, but consumer registers can facilitate participation. Researchers need to understand the key factors that facilitate trial involvement and improve consumer partnerships to identify what research topics important to stroke and transient ischemic attack (TIA) survivors and their carers. We aimed to examine i) the experience of being involved in a stroke research register, and ii) the priorities for stroke research from the perspective of stroke survivors. Methods Online and paper-based surveys were sent directly to members of a stroke register and disseminated online. Multiple choice questions were reported as counts and percentages and open-ended questions were thematically analysed using Braun and Clarke’s 6-stage process. Results Of 445 survey respondents, 154 (38%) were a member of the Stroke Research Register. The most frequently reported reason for research participation was to help others in the future. Respondents reported they were less likely to take part in research if the research question was not relevant to them, if transport was an issue, or because they lacked time. The most important research problems reported were targeting specific impairments including recovery of movement, fatigue, and aphasia, improvement of mental health services, and increased support for carers. Conclusions Recruitment to trials may be improved by research registers if an inclusive research culture is fostered, in which consumers feel valued as members of a community, have direct and timely access to research findings and the opportunity to be meaningfully involved in research around the problems that consumers find most important.

Early Experience with An Opt-In Research Register - Scottish Health Research Register (SHARE): A Multi-Method Evaluation of Participant Recruitment Performance.

Background Recruiting participants to a clinical study is a resource-intensive process and has high rate of failure. The Scottish Health Research Register (SHARE) provides recruitment support service which helps researchers recruit participants by searching patients’ Electronic Health Records (EHRs). The current study aims to evaluate the performance of SHARE in participant recruitment. Methods Recruitment projects eligible for evaluation were those for clinical trials or observational studies and had finished before the end of 2019. From SHARE records, for each project we calculated 1) the fraction of the participants recruited through SHARE as a percentage of the number requested by researchers (percentage fulfilled), 2) the percentage of the potential candidates provided by SHARE to researchers that were actually recruited (percentage provided and recruited), 3) the percentage of the participants recruited through SHARE of all the potentially eligible candidates identified by searching registrants’ EHRs (percentage identified and recruited). Research teams of the eligible projects were invited to participate in an anonymised online survey. Two metrics were derived from research teams’ responses, including a) the fraction of the recruited over the study target number of participants (percentage fulfilled), and b) the percentage of the participants recruited through SHARE among the candidates received from SHARE (percentage provided and recruited). Results 44 projects were eligible for inclusion. Recruitment data for 24 projects were collected (20 excluded because of missingness or incompleteness). Survey invites were sent to all the eligible research teams and received 12 responses. Analysis of recruitment data shows the overall percentage fulfilled was 34.2% (interquartile 13.3% − 45.1%), the percentage provided and recruited 29.3% (interquartile 20.6% − 52.4%) and percentage identified and recruited 4.9% (interquartile 2.6% − 10.2%). Based on the data reported by researchers, percentage fulfilled was 31.7% (interquartile 5.8% − 59.6%) and percentage provided and recruited was 20.2% (interquartile 8.2% − 31.0%). Conclusions SHARE may be a valuable resource for recruiting participants for some clinical studies. Potential improvements are to expand the registrant base and to incorporate more data generated during patients’ different health care encounters into the candidate-searching step.