How did you involve people?
PPI members, reviewed how the study's electronic Case Report Form (eCRF) and worded patient-reported outcomes (PROs). Based on their feedback, the eCRF was amended to better reflect patient experiences and perspectives, making the data collection process more relevant and comprehensive.
At the first trial steering committee meeting, a patient shared a significant perspective on the importance of considering patients in research. They highlighted a past experience where young researchers failed to mention patients in their presentations. This point was well-received by the steering committee members, who emphasized the collaborative nature of their study with patients.
How did you find people to involve in your project?
Professor Marzo-Ortega discussed the definition and evolving terminology of spondyloarthritis (SpA). This discussion was particularly helpful for new patients and their relatives, aiding them in understanding the variability in diagnostic information they may receive from different doctors.
How did you support people in your project?
Hosted Research Awareness Afternoon (15th Nov 2023) to provide updates for patients and public members. Patients were supported specifically throughout their work with the BAxSIC study.
What impact did it have?
Patient and Public Involvement (PPI) members, played a crucial role in reviewing the BAxSIC study documents, including the Patient Information Leaflet and Consent Form. Their feedback was invaluable, leading to adjustments that ensured the documents were clear and patient-friendly.
The committee highlighted the patient-centric approach of the BAxSIC study, which heavily relies on patient input for data collection. This approach ensures that the research is aligned with the needs and perspectives of those it aims to help.
Involvement exemplified the vital role that patient and public engagement plays in the BAxSIC study. Their contributions, from document review to active participation in the steering committee, have ensured that the study remains patient-focused. The adjustments made based on his and other PPI members' feedback highlight the study’s commitment to a collaborative and patient-centric research approach.