Building Bridges in Palliative Care: Perspectives on a Community-Health Information Exchange

Individuals experiencing homelessness or unstable housing conditions face many challenges in accessing palliative and end-of-life care. Although supports may exist in hospitals and community settings, service providers face communication barriers with different agencies and may struggle to connect clients with appropriate community and hospital resources. Community-health information exchanges (CHIEs) are one possible vehicle to enhance communication and understanding between service providers and recipients. They hold potential to support more personalized palliative and end-of-life care for individuals whose needs span multiple systems.

Participants were recruited through snowball sampling from a mobile palliative care team in Calgary, Alberta, Canada. In total, 11 service providers and 7 service recipients were interviewed. A vignette was created based on service recipient perspectives, and a thematic analysis was conducted to explore service providers' perspectives of an upcoming CHIE in Calgary. Following this, a hypothetical vignette, informed by service recipient and provider perspectives, envisioned how a CHIE could function in practice.

The fictional vignette, constructed from service recipient interviews, highlighted barriers to palliative care access such as silos in service provision and experiences of being labeled in the system. The thematic analysis showed three major themes: (1) an information exchange can have potential benefits, (2) organizational readiness and system design will shape the success of information exchange, and (3) equity, consent, and trust must remain central to implementation.

Participants indicated that a CHIE, if guided by principles of consent and equity, could meaningfully impact palliative care access and continuity for structurally vulnerable populations. However, they also cautioned that without careful attention to privacy, power dynamics, and the risk of reducing individuals to labels, CHIEs could inadvertently reinforce inequities.