Patient and healthcare professional eHealth literacy and needs for systemic sclerosis support - a mixed methods study

Objectives We engaged patients with systemic sclerosis (SSc) and healthcare professionals to assess electronic health (eHealth) literacy and needs relating to web-based support using inlet net-based information and communication technologies (ICT).Methods We employed an explanatory sequential mixed methods design. First, we conducted a cross-sectional survey in patients (n=101) and professionals (n=47). Next, we conducted three focus groups with patients, family members and professionals (n=17).Results Of patients, 89.1% used ICT at least weekly for private communication. Patients reported relatively high comprehension of eHealth information ((x) over bar =6.7, 95%CI: 6.2 to 7.3, range 1-10), yet were less confident evaluating information reliability ((x) over bar =5.8, 95%CI: 5.1 to 6.4) and finding eHealth apps ((x) over bar =4.8, 95%CI: 4.2 to 5.4). Patients and professionals reported little experience with web-based self-management support. Focus groups revealed 'considering non-ICT-accessible groups 'and 'fitting patients' and professionals' technology 'as crucial for acceptability. In relation to understanding/appraising eHealth, participants highlighted that general SSc information is not tailored to individual's disease course. Recommendations included 'providing timely, understandable and safe information 'and 'empowering end-users in ICT and health decision-making skills Professionals expressed concerns about lacking resources. Patients were concerned about data security and person-centredness. Key eHealth drivers included 'addressing end-user perceptions 'and 'putting people at the centre of technology '.Conclusions Patients and professionals need education/ training to support uptake of eHealth resources. Key elements include guiding patients to timely/reliable information and using eHealth to optimise patient-provider communication. Design that is responsive to end-users' needs and considers individuals with limited eHealth literacy and/or ICT access appears to be critical for acceptability.