Our panel members come from a range of different backgrounds and walks of life. Their lives and experiences differ and so they can offer us a variety of different perspectives. That’s really important as it ensures our research is of the best quality, has real impact and reflects the views of the wider organ donation and transplantation community.
Read on to hear directly from some of our panel members about their motivations for joining us and their experiences so far.
Irene
I’ve been a member of the panel for several years. A relation of mine was a donor, and a general interest in health and research led me to join the group to find out more. I especially wanted to find out if a health condition would mean that I could still be a donor.
I enjoy listening to the researchers talk about their projects and have learned a lot from their presentations. Some panel members have personal experiences and it’s been insightful to hear their perspectives. The panel aims to be as diverse as possible, and we have members from across the country. We regularly meet virtually and our PPIE Lead, Hannah, endeavours to organise in-person events for us to meet the team for presentations and social events.
We occasionally have tasks that we can contribute to, for example, looking at documents or the website, to make sure that things are as understandable as possible. I like to have some knowledge of research but then ‘bring myself’ to the project. We are encouraged to give feedback – we’re always told that our questions and opinions are important. I also feel that it’s important to be respectful of the views of others and to have an interest in research.
In the photo, I’m wearing ‘Red for Research’.
Joan
Is it important to get involved in research? The simple answer is yes. However, it might not appear that simple to everyone.
The BTRU carries out research into organ donation and transplantation. By becoming a member of the Patient and Public Research Panel you have the opportunity to consider research proposals, give your opinion on the relevance of a proposal and to be involved in the design and methodology of research projects. Patients and members of the public share their views, ideas and experiences; in doing so, they’re able to contribute to ongoing and future research in partnership with medical and research teams.
It’s important to stress that involvement is not exclusive. Depending upon your experience, circumstances and preferences, anyone can contribute through raising new research questions, assisting in the development of patient information documentation and publicising study findings.
Key to the success of any collaboration is the need for mutual respect and the acceptance of differing opinions. As a lay person, I’ve been involved with the BTRU since 2016 when I expressed an interest in becoming a member of the panel. From the outset it’s been a positive experience. Everyone has been welcoming, the researchers have presented their research projects using clear and informative methods, and fellow panel members have openly expressed their views with no apparent hesitation. It’s clear to me that our opinions have been listened to and that we are a valuable resource to the BTRU.
I’ve had the opportunity to attend meetings in London, where I met with people from different parts of the country, learning from their experiences, which in turn widened my own views and helped me to understand the priorities of others.
One positive outcome of the pandemic was the opportunity for people to meet virtually. It’s not always convenient or possible for people to travel around the country; however, through Zoom meetings the opportunity to connect with others has been broadened.
Never underestimate the value of your opinion: my experience with the BTRU has been positive throughout, I’ve learned so much from researchers, academics, nurse specialist, consultants and, not least, from fellow members. So, is being involved important? Simple answer: Yes.
John
I was invited by Newcastle University to join the BTRU Patient and Public Research Panel in 2016 after being interviewed by a medical student as part of their studies. My wife had received a heart transplant the previous year and I felt that not only was I interested to find out about research but also that it was a way of giving something back.
By being a member you are finding out about the research work that is being carried out and giving your opinion as an ordinary member of the public as to how you perceive the relevance of the work being proposed. Those of us whose lives are directly or, in my case, indirectly affected by the limitations of life with a transplant can impart our experiences to the researchers. But you don’t need to have any personal experience, just your own thoughts are enough – it all goes into the mix. I’ve had no formal training just guidelines on how to conduct yourself at meetings.
Our views are important to the researchers, they do take notice and sometimes have made significant changes based on what we’ve said.
For me being part of the panel has been very rewarding. And to anyone thinking of joining us I would say that it doesn’t matter who you are, where you come from, what religion or none you may follow. Come with an open mind and say what you think and ask questions. Your views are important.
Kath
The information about the panel came my way while I was recovering from a double lung transplant, so I expressed an interest and here we are.
I’m quite new to the panel, but I find it interesting and satisfying to learn about and comment on research proposals. Anything that furthers development is a positive thing.
Before joining I had online meetings with Hannah (PPIE Lead) and had the opportunity to observe a panel meeting before actively joining. I think it’s important for panel members to be interested and to be prepared to be a critical friend as you help provide a voice for current patients/recipients and indeed future patients.
If you have an interest in learning more and in contributing through co-production, then this is the place for you. You don’t need medical knowledge or experience; all you need is a willingness to listen and ask questions. This will help shape future research and in turn outcomes and that can only be for the good.
Ray
I’ve been involved with the BTRU in ODT Patient and Public Research Panel since 2018. I have no formal education in any branch of medicine but have experience with a family member who has kidney problems.
In the past at one of our renal appointments at the Freeman Hospital, I had the opportunity to attend an open meeting where the process of transplantation was the topic discussed. The meeting finished with an open request to anyone to talk about their particular experiences of the actual process, so I joined and that was 7 years ago.
From the start I felt very welcome. Becoming a member of the panel has allowed me to share my views, ideas and experiences to impact new areas of research.
Meeting with people from the BTRU and learning from their experiences has widened my own views and helped me to understand the views and concerns of others. There is value in our experience and opinions
and my experience of the BTRU has been a positive one. I have learned so much from my BTRU colleagues and fellow panel members.
Roger
Shortly after my heart transplant in 2015 I joined the BTRU as a panel member. I saw it as an opportunity to share my experience of transplant and hopefully inform future research.
The primary enjoyment of being a panel member is working with other like-minded individuals and sharing experiences. Also, I enjoy being kept abreast of research and being allowed to participate in, and influence, further research and clinical practices.
I’ve been given the opportunity to work on international projects, widening my own knowledge and understanding. The panel has been evolving since its conception and much of the training has been ad hoc and gained from group discussion with other members and professionals. However, as we’ve now grown more experienced, we’ve been exploring induction training and mentoring for new members.
The greatest joy of being a member of the panel is meeting other members and professionals and having the opportunity to discuss issues and lend support to solutions. Everyone brings a wealth of experience. All panel members need is a commitment to be open and a willingness to share ideas.
Our public co-applicant
Our public co-applicant joined us as a panel member in the first BTRU in ODT. She then played a crucial role in the current unit by becoming our public co-applicant. She was involved in the writing of the grant application, particularly in developing the plain English summary. This is what she has to say about her experience of being involved.
I originally heard about the panel from one of the existing members. Transplant surgeons undertook a massive operation on a family member with cancer. Joining the panel was a way of giving back and saying thank you for their amazing work.
I find it fascinating and inspiring to hear about the research. It’s also very interesting to hear the views of other panel members at the meetings. They come up with questions and ideas that I never would have thought of. I enjoy being involved in other activities too. These include:
- going to annual meetings with the whole research team
- participating in sessions for students and researchers
- attending online talks
- being involved in engagement activities where we meet members of the public
To help me with my role, I have attended online training sessions on relevant topics, e.g. writing in plain English.
I think the most important qualities a panel member needs are:
- an interest in learning new things
- being prepared to listen to different views on a topic
- being happy to share any thoughts you have on the research
I would advise anyone interested in joining the panel to contact Hannah to discuss what’s involved. Hannah can also arrange for people to talk to other panel members and for them to attend a meeting as a guest.
