Patient Research Advisory Group/PPI
What do we do?
At WWL we believe that patient involvement in research projects is extremely important. To facilitate this we have set up the WWL Patient Advisory Group. Funding to set up the group came from the National Institute of Health Research as part of a clinical lectureship award for Dr Jane Martindale.
- The aims of the group include:
To involve lay people, for example patients, in research at WWL
Advise on WWL research projects
Promote the benefit of public involvement in research
- The objectives of the group include:
To help to identify which research questions are important to fund
To shape the way that research is planned by working on research projects
To improve the experience of people who take part in research by influencing the way it is carried out
To influence the choice of methodology in research by suggesting measures that may be more important to people who use the services
To increase the number of people who take part in research by making sure that good quality information is given
To ensure that research findings are provided in user friendly ways and publicised widely to people who need to know about it
- Examples of our work:
Contributed to a successful grant application on how to measure fatigue associated with Ankylosing Spondylitis in collaboration with Warwick University. Direct involvement with the Principle Researcher on methodology, the interview schedule and ultimately with the analysis
Design of an interview schedule for patients undergoing hip surgery as part of a Masters Research study
Writing a patient information leaflet on how to ‘ask’ to be involved in a research study within our Trust
Providing constructive help and feedback to a study, looking at flare in Ankylosing Spondylitis, conducted by the University of Aberdeen
Contributed to the design and implementation of a study on disclosure of diagnosis in inflammatory arthritis
Guidance and lay representation for an application for an NIHR Clinical Research fellowship - Developing a novel Disclosure Needs Assessment Tool for people with inflammatory arthritis in the workplace
How to become a member
Being a member of the group is entirely voluntary. No special qualifications are needed and two half days training is provided.
- Essential qualities for group members:
Be a good communicator with a practical approach and confidence to voice your opinions
Be able to read and assimilate information about research proposals
Be available to attend meetings
Understand the requirement for confidentiality
Be willing to undertake training to equip you to carry out your role
Have a strong personal commitment to ensuring the highest standards for clinical research
To become a lay member of Wrightington, Wigan and Leigh NHS Foundation Trust
- Desirable qualities:
Live locally
Have experience as a carer or user of the NHS
Have experience serving in the voluntary sector, in education or community organisations
Have an understanding and experience of the public, private or voluntary sectors
- Our members tell us:
‘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’.
‘It is early days, but I feel we are increasingly being seen as a resource which can provide support and add value to a range of research proposals and on-going 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.”
- Our researchers tell us:
“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 are 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.”
How to get involved:
In the first instance contact Dr Jane Martindale via e-mail jane.martindale@wwl.nhs.uk
Take a look at our video which gives you more details about the Trust:
