Experiences adapting an advance care planning clinical trial in partnership with people living with HIV

The Palliative Centre, HammondCare

December 2023 Research Meeting

Insights from people with lived experience to improve trial design and increase community engagement: Experiences adapting an advance care planning clinical trial in partnership with people living with HIV

Consumer and Community Involvement (CCI), or the facilitated, active involvement of people with lived experience in the research process, is an important development which has the potential to improve community engagement and foster greater representation of diverse communities in research. Consumer and community involvement is promoted by governments and research funders. However, its implementation is variable and sometimes ad hoc. Established frameworks can enable more transparency in the use of CCI, flattening hierarchies between researchers and community members, and assisting with accurate reporting of CCI methods. This talk explores a case study in which novel CCI methods were used to consult with a community in which a stigmatised condition has impacted on health service engagement. The CCI process had a specific aim of consulting with people living with HIV, to inform the adaptation of an existing clinical trial for implementation in partnership with this population. The use of peer networks and independent facilitation has enabled a robust consultation process which has built trust and buy-in from the community organisations involved. The talk will conclude with reflections and learning from the process, considerations of challenges and resourcing, and implications for the use of CCI in other research studies.

Who: Dr Craig Sinclair, Senior Research Fellow, UNSW School of Psychology; Senior Research Fellow, Palliative Centre, HammondCare

Session Chair: Prof Josephine Clayton

When: Tuesday 5th December 1-2pm

Where: Teams teleconference

RSVP: Madeleine Juhrmann, mjuhrmann@hammond.com.au

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