Name:
Sayyora Alieva
Name of research project:
BAxSIC study
What stage(s) did you involve PwA in your research?
Identifying and Prioritising Research ☐
Project design and application ☒
Monitoring and conducting ☒
Dissemination ☐
What area is your research in?
Clinical ☐
Pre-clinical ☒
Discovery/Fundamental ☒
Health services ☐
Translational ☐
Other (please state):
How did PwA get involved?
Please let us know in as much detail as possible how PwA contributed to your research.
Tell us about your project (main aims etc):
How did you involve people?
RB, along with other SpA PPI members, reviewed how the study's electronic Case Report Form (eCRF) 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.
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. Patient RB was supported specifically throughout their work with the BAxSIC study.
Can you give more examples of how you worked with them?
At the first trial steering committee meeting, RB 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.
What impact did it have?
Patient RB, alongside two other 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.
RB’s involvement exemplifies 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.