Patient Research Advisory Group/PPI
What do we do?
At WWL we believe that patient and public involvement in research is extremely important. As with the INVOLVE organization (https://www.involve.org.uk/) we believe that people should be at the heart of decision making about research. To facilitate this we have set up the WWL Patient Research Advisory Group. The original funding to create our group came from the National Institute of Health Research (NIHR) as part of a Clinical Lectureship award held by Dr. Jane Martindale. Jane continues to both support and co-ordinate the work of the group in her current role as Research Sponsorship Manager.
- The aims of the group include:
- To involve lay people, for example patients and service users, to work in collaboration in research at WWL as we work towards a common vision.
- To try to ensure that the work that we do meets the values of the INVOLVE organisation which shares the belief that everyone in society has an equal right to be listened to and participate in decisions that affect their lives.
- 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.
- 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 together with WWL clinicians alongside experts from Academic Institutions and Clinical Trials Units.
- To improve the experience of people who take part in research by influencing the way it is carried out
- To influence the choice of the design and the way that research should be carried out by suggesting measures that are acceptable for people who use the services
- To increase the number of people who take part in research by making it is of good quality and is easy to understand. We aim to ensure that research information and findings are provided in user friendly ways and shared as widely as possible.
- To try to reach out into our community to overcome barriers of being involved in research ensuring that we address issues of both inequality and diversity.
- To try to alleviate fears of taking part the research studies by giving clear and understandable explanations e.g. when new methods of treatment or new medications are involved.
- Examples of our work:
- We have supported a large grant application to the National Institute of Research (NIHR) and are continuing to work collaboratively with the study team on the SOFFT trial (Suture fixation versus tension band wiring for simple olecranon fracture fixation: a multi-centre randomised controlled trial).
SOFFT is a multi-centre, non-inferiority Randomised Controlled Trial within UK Major Trauma Centres and Trauma Units. WWL are the Sponsor for the study and we are working with the University of York Clinical Trials Unit. The trial is aiming to see if tension suture repair is not inferior to tension band wiring for surgical fixation of fractures of the olecranon (elbow) in 280 consenting patients over the age of 16 years. 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.
https://www.york.ac.uk/healthsciences/research/trials/research/trials/sofft/#tab-1
- We have contributed to a successful grant application which led to the completion of a PhD study for Dr. Nathan Pearson. The aim of the study was to understand and measure the impact of fatigue associated with axial SpA and was in collaboration with Warwick University. The group worked directly with Dr. Pearson from the original grant application including the methods used, helping with the interview schedules and ultimately with the analysis. The work continues with an application for funding for the final stage of the validation of a patient centered questionnaire which has been developed as a consequence of the study.
Examples of how this work has been shared are currently as follows and further papers are in press:
https://academic.oup.com/rheumatology/article/59/Supplement_2/keaa111.069/5822332
https://academic.oup.com/rheumatology/article/59/Supplement_2/keaa111.070/5822339
- 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?
- We have contributed to the design and implementation of a study on disclosure of diagnosis in inflammatory arthritis
https://www.mrc.soton.ac.uk/cmhw/work-productivity-and-ankylosing-spondylitis/
- We have supported a large grant application to the National Institute of Research (NIHR) and are continuing to work collaboratively with the study team on the SOFFT trial (Suture fixation versus tension band wiring for simple olecranon fracture fixation: a multi-centre randomised controlled trial).
How to become a member
Being a member of the group is entirely voluntary. No special qualifications are needed and training is provided.
- Do you want to get involved with research at WWL?
Research is a vital part of the NHS. Up and down the country there are hundreds of research projects taking place, which are aiming to improve patient care.
That is why we are looking for people to join a group to advise on programme proposals for research for the NHS.
It is very important that people who have used NHS services also have input into the research that is to be carried out. Consequently we have set up our Patient Research Advisory Group, which involves ordinary people who have experienced being a patient, carer or a service user.
The group aims to give advice to NHS practitioners which takes into account the requirements of the patient. We help with all types of research not only establishing questions but also giving information to enable a suitable research programme to be established.
Our group aims to introduce and facilitiate service user involvement in research at WWL. We help to guide researchers to ask the right questions and ensure that patient information about research 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.
If you feel you could assist in patient research we are currently looking for new members, and would welcome hearing from you!
If you would like to join the group or would like more information please contact Jane Martindale via e-mail: jane.martindale@wwl.nhs.uk
- 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 including zoom 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
- Become a lay member of Wrightington, Wigan and Leigh Teaching Hospitals 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.”
“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.”
- 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 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.”
Take a look at our video which gives you more details about the Trust:
How to get involved:
In the first instance contact Dr Jane Martindale via e-mail: jane.martindale@wwl.nhs.uk
Patient and Public Involvement
The Wrightington Wigan and Leigh Patient Research Advisory Group Poster
The WWL Research and Development Department Patient Satisfaction Survey 2017
National Institute for Health Research (NIHR) Patients and the Public Newsletter September 2019
