Here at North Bristol NHS Trust we run a range of Patient and Public Involvement (PPI) groups where we actively work in partnership with patients and members of the public to plan, manage, design and carry out research.
Meet Jos, a member of our H4RT (Kidney Research) Patient & Public Involvement (PPI) group...
I have been a renal dialysis and transplant patient for 21 years.
Kidney failure runs in the family so I was really first involved in the early 70s when my Mum was on dialysis at home and we helped to construct the kidney machine filter three times a week. This required big trays of formaldehyde and torque wrenches and could be the reason I ended up an engineer!
Why did you join this PPI group?
The reason I decided to join was because I’ve seen the remarkable advances in dialysis technology since my mum was unwell 50 years ago and wanted to help in future developments that will improve patient care.
How did you find your role within the group?
I’ve found my role challenging but interesting because we are continually trying to communicate complicated issues to the wide ranging kidney community. As a lay member of the public we don’t understand fancy medical vocabulary so we have to dream up new ways of describing medical terms. We also have to think of ways to make our research programme interesting and to encourage as many people as possible to sign up.
Is there anything you have learned about how a research study is run that you didn’t know before?
It’s clear that the medical community are continually trying to answer new questions but they can only do this with the help of patients. The research infrastructure at Southmead is much bigger than I realised. I didn’t know there were so many research nurses and doctors involved across the various medical disciplines.
What type of activities have you been involved in?
I’ve been involved in designing posters and web-based publicity and helped in a range of meetings, including a national event where I gave a short presentation on the role of the Patient & Public Involvement (PPI) groups. One of the meetings was in the Shard in London so there are perks to the job! Acting as a patient member of a research committee keeps the medics on their toes as they are forced to put themselves in the position of patients.
What would you say to anyone who is thinking about being part of a Patient & Public Involvement (PPI) group?
Patient and Public Involvement Groups need members from a wide range of ages and communities. We all have different life experiences but a common bond of benefitting from medical help so don’t be shy and get involved. You could make the difference to the patients that follow and there’s satisfaction in making a difference.