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

Abstract

Chao C1,2,3,4,5, Berlowitz DJ2,3,6, Metcalf O5, Gregson PA4, Hart GK5,7, Howard ME2,3,8,9

User-centred design of a patient portal for persons living with home mechanical ventilation and long-term tracheostomy: A mixed methods study 1. Department of Physiotherapy, Austin Health 2. Department of Respiratory and Sleep Medicine, Austin Health 3. Institute for Breathing and Sleep 4. Tracheostomy Review and Management Service, Austin Health 5. Centre for Digital Transformation of Health, The University of Melbourne 6. Department of Physiotherapy, The University of Melbourne 7. Intensive Care Unit, Austin Health 8. Department of Medicine, The University of Melbourne 9. School of Psychological Sciences and Turner Institute for Brain and Mental Health, Monash University

Aim: Patient portals are secure online platforms that offer patients access to their personal health information. While patient portals are being increasingly offered by health services, there is limited data on their use for persons living with home mechanical ventilation (HMV) and/or long-term tracheostomy. This study conducted at an Australian tertiary hospital aimed to explore the perspectives and attitudes of patients and carers regarding the introduction of a patient portal.

Methods: A mixed-methods study was conducted utilising a user-centred design approach. Data from persons living with HMV and/or long-term tracheostomy or their carers, were obtained via a survey administered online and mail, complemented by semi-structured interviews. Informed consent was obtained and ethical approval was obtained from the Austin Health Human Research Ethics Committee.

Results: 231 survey responses were received and 6 semi-structured interviews were conducted. Interest in using a patient portal was high, with 87% of survey respondents indicating that they would consider using a patient portal. Those that were significantly more likely to be interested were younger (< 60 years), 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 highest interest were the ability to view personal health information including ventilation and tracheostomy information and the ability to order ventilation and tracheostomy related equipment. Key concerns regarding using a portal were the inability to use a portal effectively, a perceived reduction in level of hospital services and security of personal data.

Conclusion: The majority of people living in the community with long-term ventilation and/or tracheostomy were interested in using a patient portal to navigate their health care. To facilitate uptake and usage of a patient portal, reasons for hesitancy with using a patient portal also needs to be considered before and during implementation.

Impact: This study provides information regarding preferences and attitudes of persons living with home mechanical ventilation and/or long-term tracheostomy regarding use of a patient portal.