The Identification of Topics for Research that are Important to People with Ulcerative Colitis
For which topic were research priorities identified?
In which location was the research priority setting conducted?
Europe - United Kingdom
Why was it conducted at all?
While involvement of patients is becoming more frequent once research funding and study design has been completed (for example as members of supervision committees), consultation of patients at the beginning to identify and prioritize areas for research is still rare. Ulcerative colitis was chosen as the disease of interest because we wished to use the findings to shape our local research strategy in the area of inflammatory bowel disease and because a small pilot study had suggested that it was feasible.
What was the objective?
to identify topics for research that are important to people with ulcerative colitis, and to provide a framework by which their research priorities can be analyzed
What was the outcome?
a list of 9 research topics
How long did the research prioritization take?
No information provided.
Which methods were used to identify research priorities?
focus group; interview
How were the priorities for research identified exactly?
Step 1: focus groups and interviews: discussion about patients' experience of colitis followed by discussion of their understanding and experience of research and discussion of research priorities. Step 2: data processing: content analysis: research topics identified, categorized and grouped together
Which stakeholders took part?
People with ulcerative colitis. Focus group: 25 participants. Interviews: 15 participants.
How were stakeholders recruited?
Purposive sampling was used to achieve a balance of representation. The project team sampled for diversity of experience and to represent a range of sex, age and length of time with disease. Patients were recruited at random from the hospital database of patients with inflammatory bowel disease or from out-patient clinics. The sampling frame ensured that all ages and disease extent and disease duration were represented.
Were stakeholders actively involved or did they just participate?
Stakeholders were mere participants of the research prioritization process; they were not actively involved in the process.