Empowerment, digital literacy and shared digital health records: the value of 'nothing about me without me'

People with complex chronic conditions (CCCs), particularly those living in rural locations, experience numerous challenges in engaging with quality integrated healthcare services. The deployment of shared digital health records (SDHRs) has been promoted to lessen these issues. However, the implementation of them has actually exacerbated the problems and inhibited SDHR adoption and use with this cohort as well as amongst rural health professionals. Based on a larger study conducted with a rural community, supported to adopt and use their SDHR, this paper highlights one finding, an empowerment gap. This needs to be overcome if vulnerable healthcare users and health professionals are to be able adopt and use SDHRs and realise some of their promised benefits. Critically, the finding highlights the importance of these users being empowered as active participants in SDHR adoption and use including by overcoming the digital literacy challenges faced. The research demonstrates that traditionally marginalised people living with CCCs in rural communities can be empowered and benefit more from an SDHR in ways comparable with users from less vulnerable groups.