Background:
The ultimate cause of arthritis and autoimmune conditions remains unknown. There is interplay between genetic and environmental factors for disease occurrence. New interest in the microbiome suggests there may be a role in pathogenesis. Collection of blood, saliva and stool samples will be necessary for testing for biomarkers which may play a role in inflammatory arthritis. Biobanking is becoming increasingly important in research. Our aim is to assess patient perspectives on the microbiome, biobanking, data linkage and willingness to participate in such research.
Methods:
Mixed methods including quantitative and qualitative principles will be used. Data will be collected in an anonymous survey disseminated via social media, through a semi-structured individual and group interview process (focus groups). Focus groups will be moderated by a group leader. Adult patients with rheumatic conditions and their caregivers will be invited. Demographic details will be collected with a standard questionnaire. Interviews will be audio-recorded and transcribed.We will conduct thematic analysis of the transcripts. The project has ethics approval from Northern Sydney LHD.
Results:
The preliminary results will be presented during the meeting. This will include results of the survey data, semi-structured interview and focus groups.
Conclusions:
This qualitative study may provide insight into patients’ perspectives and avenues to strengthen participation in scientific research, particularly in an Australian setting.