Opinions and priorities for an e-health platform: A member consultation from an intensive care patient organisation.

Background: To prevent deterioration after admission to the intensive care unit (ICU), and to improve rehabilitation, the ICU team should use digital technologies to provide comprehensive and practical information alongside personalised support for survivors and their family members. However, a knowledge gap exists on the users' preferences for such an e-health platform in ICU follow-up services.

Objectives: This study aims to explore the opinions and priorities for an e-health platform, including choices in digital elements, according to survivors of critical illness and their family members.

Methods: A cross-sectional survey was used among members and other interested individuals of the Dutch volunteer organisation 'Foundation Family- and Patient-Centred Intensive Care'. An investigator-developed questionnaire was disseminated through the newsletter and social media channels of the Foundation Family- and Patient-Centred Intensive Care. The results of this member consultation were analysed and reported as descriptive statistics on demographic variables and outcome measures in opinions and priorities of the participants.

Results: Most of the 227 participants were female (76%), aged 46-55 years (33%), and completed higher education (70%). The participants reported high confidence in advice delivered through an e-health platform (72%). They prioritised the provision of a guide including relevant professionals who may support them during their recovery when using an e-health platform.

Conclusions: ICU survivors prioritised the provision of relevant professionals who may support them during their recovery when using an e-health platform; however, selection bias means the population studied is likely to be more digitally connected than the general ICU population. Digital solutions could cater to their information and support needs. For family members, the highest priority reported was receiving help in managing their emotional distress. The development of an e-health platform considering the opinions and priorities of this target group could contribute to a personalised recovery trajectory promoting self-management while including digital elements addressing relevant ICU follow-up services.