Assessing effectiveness and patient perceptions of a novel electronic medical record for the management of inflammatory bowel disease

BACKGROUND AND AIM: There is an increasing prevalence of chronic disease worldwide, resulting in multiple management challenges. Inflammatory bowel disease (IBD) is an exemplar chronic disease requiring coordinated longitudinal care. We propose that Crohn's Colitis Care (CCCare), a novel IBD‐specific, structured electronic medical record is effective at improving data capture and is acceptable to patients. METHODS: A comparison was made between IBD‐data completeness in usual records and CCCare. CCCare's acceptability to patients was assessed in two independent IBD patient cohorts and included: • Overall ratings of acceptability. • Factors associated with pre‐exposure acceptability ratings. • Whether exposure and security concerns influenced acceptability ratings. • Direct patient feedback through CCCare's patient portal. RESULTS: In all cases reviewed, there was data gain using structured CCCare fields compared with IBD documentation in usual medical records. The overall acceptability in the combined cohort (n = 310) was very high. More than three‐quarters of patients rated acceptability as >7 of 10. Self‐reported information technology (IT) literacy positively associated with acceptability. Exposure had a small positive affect on acceptability, whereas security concerns had little impact on acceptability. Patient portal feedback revealed that most patients are very likely to recommend CCCare to others (8.56 ± 2.2 [out of 10]). CONCLUSION: CCCare is effective in supporting more complete IBD‐specific data capture compared with usual medical records. It is highly acceptable to patients, especially those with reasonable IT literacy. Patient concerns about privacy and security of electronic medical records (EMRs) did not significantly affect acceptability.