Background Crohn’s Colitis Care (CCCare) is an eHealth platform utilised at twenty adult and paediatric centres across Australia and New Zealand. CCCare empowers people with IBD to have sustained involvement in their treatment through a patient portal and questionnaires embedded in routine clinical practice. We aimed to explore the patient experience using the CCCare platform.
Methods We analysed voluntary patient feedback from January 2019 to December 2022 to routinely generated questionnaires sent 2 weeks before scheduled clinical reviews. 2459 responses were analysed with both qualitative and quantitative data sought.
Results The average user rating from 2459 responses was 8.45 out of 10. Yearly ratings were stable, with a low of 8.37 in 2019 and a high of 8.51 in 2020. 512 free text responses were reviewed and categorised (IDDF2023-ABS-0141 Table 1). Users remained engaged in software development, with 14% of responses in 2019 and 20% in 2022 aimed at improved user functionality. Patient users are increasingly utilising CCCare to communicate directly with their healthcare providers (11% of responders in 2019 vs 27% in 2021) reflecting increasing user demand to have avenues of communication embedded within the software (p=0.007).
At the start of our study, respondents reported insufficient education regarding CCCare software and the role it played in their clinical care; this proportion of individuals plateaued at 7% and 8% in 2019 and 2020 before falling to 4% in 2022, consistent with measures instigated to engage and educate the software’s patient users. Paralleling this trend was improved familiarity with the CCCare patient user interface, with 20% of respondents reportedly unfamiliar with CCCare software in 2019 compared to just 9% in 2022 (p=0.043).
Conclusions Patient users have shown sustained positive feedback to the CCCare platform, with improvements in patient education levels regarding CCCare software. Patient users continue to demonstrate increased demand for expanded functionality to e-Health software as a means to communicate with treating centres and to influence future software upgrades aimed at an improved user experience. Further funding to support software upgrades and incorporate additional features demanded by patients is needed to facilitate patient empowerment and ongoing involvement in their healthcare journey.
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