User-centred design of a patient portal for persons living with home mechanical ventilation and long-term tracheostomy: a mixed methods study

Patient portals are secure online platforms that offer patients access to various functions such as personal health information. While patient portals are being increasingly offered by health services, there are limited data on their use for persons living with home mechanical ventilation (HMV) and/or long-term tracheostomy. This study, conducted at an Australian hospital's home mechanical ventilation and long-term tracheostomy services, aimed to explore the perspectives and attitudes of patients and carers regarding the introduction of a patient portal. There were 231 survey responses and 6 semi-structured interview participants. Interest in using a patient portal was high with 87% of survey respondents indicating that they would consider using a patient portal if it were offered. Those that were more likely to be interested were younger, had higher levels of education, and reported being confident with using technology and accessing health information. The functions of a patient portal that were of most interest were the ability to view their own health information including ventilation and/or tracheostomy information and the ability to order ventilation and tracheostomy-related equipment. This study is the first step of a user-centered design for the implementation of a patient portal for persons living with home mechanical ventilation and/or long-term tracheostomy.