Joan Bedlington, BTRU Public and Patient Research Panel member
The simple answer is yes. However, it might not appear that simple to everyone.
National Institute for Health Research (NIHR) Blood and Transplant Research Units (BTRUs) conduct research into organ donation and transplantation, blood donor health and genomics, stem cells and immunotherapies and red blood cell products. By becoming a member of one of their Patient and Public Research groups 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 have been involved with the Newcastle and Cambridge BTRU in Organ Donation and Transplantation (ODT) since 2016 when I expressed an interest in becoming a member of the Patient and Public Research Panel. From the outset it has 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 in ODT.
Recently I’ve had the opportunity to attend meetings in London, where I have met with people from BTRUs from different parts of the country, learning from their experiences, which in turn widens my own views and helps me to understand the priorities of others.
One positive outcome of the pandemic has been 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 in ODT has been positive throughout, I’ve learned so much from researchers, academics, nurse specialists, consultants and not least from fellow members.
So, is being involved important? Simple answer: Yes.