On Monday 3rd August 2015, SITU hosted its first patient involvement group. This was for proposed research into Dupuytren’s disease. SITU are currently supporting an application for a National Institute of Health Research (NIHR) HTA Call which will look at whether a new injection containing the drug Collagenase is as effective as surgery for the treatment of moderate Dupuytren’s.
SITU hosted the focus group to receive input into the proposed research from service users. In this case patients who all had some form of treatment for Dupuytren’s. The group was also supported by a member of staff from the South Central Research Design Service (RDS), who was able to facilitate the session. The team in SITU had prepared some topics which they wished to discuss with the patients. These included which outcome measure the patients felt best represented their concerns and limitations from the Dupuytren’s. The feedback from the patients will be considered and incorporated where possible into the choice of outcome measure utilised. The patients also discussed what they would like to see if a new outcome measure were to be designed. The group also reviewed the ‘patient flow’ which was proposed. This involved discussing how many follow-up visits would be acceptable for patients. The group also liked the idea of providing patients with tablets during visits to fill out questionnaires. The group also agreed that patients should be offered the choice of filling in follow-up questionnaires online or by hand.
The meeting started with one of the lead surgeons on the project explaining why the research needed to be done, and why we needed patient input into the research. As this surgeon had treated the members of the focus group, he then left the room so that everyone could speak freely and without concern. The group then discussed their own experiences with Dupuytren’s, and the effect that their treatment had on them. The variety of experiences of the group was particularly interesting.
The discussions from the focus group will inform the team’s application to the HTA, the deadline for which is the 24th September 2015.