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Early experience with an opt-in research register - Scottish Health Research Register (SHARE) : a multi-method evaluation of participant recruitment performance
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dc.contributor.author | Shi, Wen | |
dc.contributor.author | Vasishta, Shobna | |
dc.contributor.author | Dow, Louise | |
dc.contributor.author | Cavellini, Daniella | |
dc.contributor.author | Palmer, Colin | |
dc.contributor.author | McKinstry, Brian | |
dc.contributor.author | Sullivan, Frank | |
dc.date.accessioned | 2021-12-21T15:30:14Z | |
dc.date.available | 2021-12-21T15:30:14Z | |
dc.date.issued | 2021-12-20 | |
dc.identifier.citation | Shi , W , Vasishta , S , Dow , L , Cavellini , D , Palmer , C , McKinstry , B & Sullivan , F 2021 , ' Early experience with an opt-in research register - Scottish Health Research Register (SHARE) : a multi-method evaluation of participant recruitment performance ' , BMC Medical Research Methodology , vol. 21 , no. 1 , 286 . https://doi.org/10.1186/s12874-021-01479-4 | en |
dc.identifier.issn | 1471-2288 | |
dc.identifier.other | PURE: 277180911 | |
dc.identifier.other | PURE UUID: 204852d2-2fcc-4a07-8a13-ae78132e9496 | |
dc.identifier.other | RIS: urn:B46AAD8FF4795321BF95A32F5EA78AA9 | |
dc.identifier.other | RIS: Shi2021 | |
dc.identifier.other | Scopus: 85121443886 | |
dc.identifier.other | WOS: 000732959900002 | |
dc.identifier.other | ORCID: /0000-0002-6623-4964/work/105318574 | |
dc.identifier.uri | http://hdl.handle.net/10023/24555 | |
dc.description | WS is a PhD student funded by the University of St Andrews. | en |
dc.description.abstract | 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. | |
dc.format.extent | 20 | |
dc.language.iso | eng | |
dc.relation.ispartof | BMC Medical Research Methodology | en |
dc.rights | Copyright © The Author(s) 2021. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. | en |
dc.subject | Electronic health records | en |
dc.subject | Patient recruitment | en |
dc.subject | RA Public aspects of medicine | en |
dc.subject | ZA4450 Databases | en |
dc.subject | Epidemiology | en |
dc.subject | Health Informatics | en |
dc.subject | DAS | en |
dc.subject.lcc | RA | en |
dc.subject.lcc | ZA4450 | en |
dc.title | Early experience with an opt-in research register - Scottish Health Research Register (SHARE) : a multi-method evaluation of participant recruitment performance | en |
dc.type | Journal article | en |
dc.description.version | Publisher PDF | en |
dc.contributor.institution | University of St Andrews. School of Medicine | en |
dc.contributor.institution | University of St Andrews. School of Computer Science | en |
dc.contributor.institution | University of St Andrews. Population and Behavioural Science Division | en |
dc.contributor.institution | University of St Andrews. Sir James Mackenzie Institute for Early Diagnosis | en |
dc.identifier.doi | https://doi.org/10.1186/s12874-021-01479-4 | |
dc.description.status | Peer reviewed | en |
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