Patient Research Advisory Group/PPI

The PRAG aims to give advice to NHS researchers from a patient/carer perspective, considering the requirements and needs of the patient. We may be asked to review a proposed protocol (document detailing the projects aims etc. and how it will be conducted) or a patient information sheet to check that is clear, readable, and acceptable. We are also able to give researchers personal insights about our experiences and we can help to influence the way that the research will be carried out.
Our aims are:
•    To involve patients, service users and the public, to work in collaboration with researchers at WWL 
•    To help to develop research questions and design ways to answer them by working alongside clinicians
•    Promote and champion the benefit of public involvement in research
•    To act as Patient Partners working as members of teams to develop grant applications to secure funding to carry out research
•    To improve patient outcomes

• We have supported large grant applications to the National Institute of Research (NIHR) and are continuing to work collaboratively with the study teams to reach publication. A couple of examples are:
• The SOFFT trial (Suture fixation versus tension band wiring for simple olecranon fracture fixation: a multi-centre randomised controlled trial).
  The trial aims to see if tension suture repair is not inferior to tension band wiring for surgical fixation of fractures of the olecranon (elbow). Depending on the results of the trial, the study has the potential to change the type of surgical fixation used for simple olecranon fractures, allowing a more efficient use of NHS resources, or to prevent widespread adoption of a new fixation technique if it is not shown to have sufficient benefits for patients and use of NHS resources compared to the current method.
• The Rapsodi Trial (Reverse or Anatomical replacement for Painful Shoulder Osteoarthritis, Differences between Interventions: a multi-centre randomised controlled trial) The trial aims to evaluate the clinical and cost effectiveness of Reverse Total Shoulder Replacement compared to Anatomical Total Shoulder Replacement for patients with painful Osteoarthritis of the shoulder joint with an intact rotator cuff. The primary outcome measure is to determine the difference in patient-reported shoulder pain and function between the two interventions.
• Writing a patient information leaflet on how to ‘ask’ to be involved in a research study within our Trust (Taking part in a Research Study, is it for me?)

“I really enjoy meeting and working with people with a range of different backgrounds and conditions. Everybody has something different to contribute and are all really friendly and supportive. I feel I have learnt something new after every meeting and also have a greater insight into my own condition. It has also been interesting to meet medical staff and researchers from both within the trust and from other establishments.”

“I feel we are increasingly being seen as a resource which can provide support and add value to a range of research proposals and ongoing projects.”

“Hopefully our discussions have given researchers a greater insight into their work from a patient’s perspective.”

“I am an ordinary member of the public with no specific medical knowledge. I come to each task with an open mind and look at the proposals from a lay persons view point. I ask questions about things I do not understand so the researchers can see if clarification needs to be added to their proposal.”

“I feel as though I am doing something useful.”

“I enjoy meeting new, interesting people who bring a variety of life skills to the group.”

“I try to bring an open non-medical mind and patient’s point of view by clarification of the why and how the research will benefit the patients”.

“I feel that my contributions were valued. I have enjoyed and learnt from hearing the life lessons of my fellow volunteers, prompted by the research topics under discussion. I feel that barriers to conversations with clinicians are broken down. This has given me an excellent insight into the process of the whys and the wherefores for research and barriers to gaining funding for research projects.”

“I know speaking to family and friends about research most do not understand what it entails and how much work and time is involved in the process.  I personally find that the meetings are very interesting and that we can be involved in a variety of subjects.  I feel my opinion matters.”

“The patient research advisory group is a great asset to the Trust. I am an early career researcher and have been guided by them at various stages of research. I have approached the group for developing multiple research projects and they have been kind enough to read through research documents and provide valuable feedback. Their feedback ensures that the research projects at WWL Trust as easily understandable and accessible for potential participants.”

“Following a lengthy consultation with the group I was able to modify interview questions to make them easier to understand, relevant and comprehensible.  The group helped me to refine my thinking around the interviews, ensuring that I was capturing the most important aspects for patients regarding their fatigue experiences.”

“I would like to extend my thanks to the patient research partner group for their interest, support and enthusiasm for our project. Particularly, I am extremely grateful for the relationship we have been able to develop over the last 4 years and their warm welcome and engagement during and after our meetings. I would also like to thank all the patients and healthcare professionals who participated in my research studies.”