The results of medical trials should be shared with patients and the public. This ensures that the research is clear, honest, and trustworthy. But, in reality, results are not often shared with these groups. Previous studies show that one of the major reasons why results are not being shared regularly is that researchers are unsure about the best way to share the results. There is no formal system to guide researchers on what results to share, when and in which format. Therefore, we are aiming to develop a standard reporting guideline for researchers to use when they are sharing results with patients and the public.
Before developing any guidance, it is important to carry out research to understand the opinions and preferences of the stakeholders involved – in this case, the people who will write the report (researchers) and those who will read the report (patients and the public). In this study, we will interview both of these groups to obtain their opinions and recommendations on how best to share results, what information to include and which formats to use. This will empower participants and the public to be fully aware of the trial results and increase future participation. By taking into account public opinion, we plan to make the guidelines responsive to people’s needs and to make them user-friendly and accessible.
Below is a simple outline of what is involved:
- A single one-to-one interview, which will take about an hour, where we will talk through opinions of how people want to receive trial results; interviews can be done in-person, via phone or online, depending on what the participant wants.
- Participants will be invited to join a focus group discussion (optional), where they can discuss with other participants and share their opinions. This will take about 1.5 hours.
If you are interested in taking part, please email or call for more details (participant information sheet, etc) – see contact details below. Participants should be over 18 years old. The aim is to be as inclusive and diverse as possible. Preference will be given to participants who are from ethnic minority communities or any other minority groups as I want to reflect the viewpoints of the under-represented and ensure their voices are heard.
Date required
Ongoing
Organisation
University of Oxford, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences.
Contact
Sanjana Choudhury: Sanjana.choudhury@wolfson.ox.ac.uk
Phone: +44 7574279163
https://www.ndorms.ox.ac.uk/team/sanjana-choudhury
Clinical Trial Registration Details
N/A