The Patient and Public Involvement (PPI) group was established in 2009 and includes approximately 200 members with an interest in PPI. These members have the opportunity to receive regular newsletters and updates, attend public engagement events such as “Ask the Researcher” and participate in PPI activities such as those below.
Ways in which the PPI group support the aims of the BRC include:
In 2015 a Core Steering Group was established to oversee the PPI activity. This group currently comprises 11 PPI members along with members of BRC, and is chaired by PPI member Lynne Lister.
Over the past 22 years that I have been a patient at Chapel Allerton Hospital, I have seen a lot of positive changes here. One of the changes is the research that goes on in the hospital.
I have taken part in many clinical trials, the present trial that I’m part of is called the STRIKE study. The purpose of this study is to collect blood samples and imaging data over a 5-year period, from people who have scleroderma disease such as myself. The study hopes to use this information to better predict who will be likely to undergo disease progression in the future. I have recently had an MRI scan of my right hand to see how the circulation flows in my fingers as I have Raynaud’s disease.
Without the regular treatment for the management of my scleroderma that I receive at Chapel Allerton hospital both as an outpatient and inpatient, I would not be able to do half the things that I do- such as taking on my new role as chair for the BRC PPI core group. I’m very passionate about the work that is done at Chapel Allerton Hospital, and it is even more exciting to be able to give something back for all the help, support and dedication of the doctors and staff, as without this help from patients the research would not be as successful.