Supplementing electronic health records through sample collection and patient diaries: A study set within a primary care research database

Abstract

PurposeTo describe a novel observational study that supplemented primary care electronic health record (EHR) data with sample collection and patient diaries.MethodsThe study was set in primary care in England. A list of 3974 potentially eligible patients was compiled using data from the Clinical Practice Research Datalink. Interested general practices opted into the study then confirmed patient suitability and sent out postal invitations. Participants completed a drug‐use diary and provided saliva samples to the research team to combine with EHR data.ResultsOf 252 practices contacted to participate, 66 (26%) mailed invitations to patients. Of the 3974 potentially eligible patients, 859 (22%) were at participating practices, and 526 (13%) were sent invitations. Of those invited, 117 (22%) consented to participate of whom 86 (74%) completed the study.ConclusionsWe have confirmed the feasibility of supplementing EHR with data collected directly from patients. Although the present study successfully collected essential data from patients, it also underlined the requirement for improved engagement with both patients and general practitioners to support similar studies.

Exposure measurement error when assessing current glucocorticoid use using UK primary care electronic prescription data

“…This analysis was conducted as part of a study investigating GC use and adrenal insufficiency in patients with rheumatoid arthritis (RA) (the “SAIRA” study) …”

“…Clinical Practice Research Datalink provided the complete, depersonalised, EHR for the participants in this study, as of June 2016. The design of the study precluded linkage of CPRD data to identifiable patient data, except by the relevant general practice …”

Low salivary cortisol levels in patients with rheumatoid arthritis exposed to oral glucocorticoids: a cross-sectional study set within UK electronic health records

“…Invitations were sent to 526 patients, of whom 117 consented to take part in the study. The full flow of participants has been described previously 21 and is shown in online supplementary file 5 . Of the 117 participants who returned consent forms, 86 returned both their saliva samples and diaries.…”

“…Full details of the study design and recruitment process have been described previously. 21 In brief, participants were recruited through English general practices and completed the study on a single morning between October 2015 and April 2016 (the ‘study completion date’).…”

“…Although identifiable information was collected from participants in order to conduct the study, the data flow ensured that the depersonalised EHR could never be linked to identifiable data by either the study team or CPRD. 21 …”