How should electronic health records be designed? A cross-sectional study in patients with psoriasis

BACKGROUND: Electronic health records (EHRs) are promising tools for routine care. These applications might not only enhance the interaction between patient and physician but also support therapy management. This is crucial in complex and chronic conditions like psoriasis. However, EHRs can only unfold their full potential when being accepted by the users. Therefore, this study aims to analyse how EHRs should be designed for patients with psoriasis and to identify differences between patient subgroups. METHODS: We developed a questionnaire on the acceptability of EHRs based on literature research and results from focus groups. Participants completed a paper-based or electronic version of the questionnaire. We recruited participants at an outpatient clinic as well as online via patient associations and a social media platform. We analysed data using descriptive statistics and bivariate analyses applying Chi-square and Fisher’s exact test. RESULTS: The sample encompassed 187 patients with psoriasis. Data reveals that 84.4% of the participants can think of entering data into an EHR. Participants prefer entering data at home (72.2%) instead of entering data in the waiting room (44.9%) and using an own internet-ready device (laptop/computer: 62.6%; smartphone/tablet: 61.5%) instead of a provided device (46.0%). Altogether, 55.6% of participants would accept entering data on a monthly basis when this lasts between one and 10 minutes and further 27.8% would accept even longer lasting data entry. Data privacy is of great concern (e.g. patient should decide who has access to data: 96.7%). Subgroup analyses reveal differences with regard to age, educational level, burden due to psoriasis, number of internet activities, use of electronic questionnaires and mode of administration. CONCLUSION: The high acceptance of entering data is favourable for the implementation of EHRs. The results suggest technical and structural recommendations: Differences between subgroups support the development of flexible EHRs encompassing a basic module, which is expandable with further add-ons, and compatible to different devices. Furthermore, involving patients by entering data into an EHR requires that physicians communicate open-mindedly with the patient and consider data throughout decision-making. Patients should remain owner of their own health data and decide about its processing.