Patient and Public Involvement and Engagement
Patient and public involvement and engagement (PPIE) is central to our research.
It improves our research and motivates us to work even harder to find better treatments for patients with blood cancer and other blood disorders. We value our partnerships with patients, carers and members of the public. You can read more about Public and Patient Involvement here.
You could join us!
We have two friendly ways to connect, share ideas and work together. You don’t need any qualifications or previous experience to join, just a willingness to share your thoughts and work with others.
Activities vary from voting on ideas, commenting on documents, taking part in online meetings or attending events. You will always know what to expect (e.g. how long it will take, what support is available and payments offered) – so you can decide if it is right for you. Watch our video to see some of our members describing their reasons for getting involved.
BTRU PPIE Launch Video from Mark Chatterley on Vimeo.
Patient and Public Advisory Mailing Group
This is a network of patients, carers and members of the public who receive a regular newsletter (by email or post). This provides updates about the research and opportunities to get involved. Most activities are short tasks that can be done from the comfort of your home. However, there are opportunities to meet the researchers too! Members can get involved as much, or as little, as they want.
Patient and Public Strategy Group
This group includes patients, carers and members of the public who meet regularly. They help the researchers to make important decisions and provide ongoing advice. They also shape how we do PPIE. Members generally meet online, but occasionally attend events in Birmingham or Oxford.
Interested? Have questions?
Contact Karen/Lee to find out more: btruppi@contacts.bham.ac.uk
Glossary
Graft-versus-host disease (GVHD) This is an immune reaction that occurs in some people after a stem cell transplant from another donor. It can cause inflammation in different parts of the body.
Graft-versus-leukaemia (GVL) This describes the process by which a donor immune system can 'reject' any remaining leukaemia cells in the patient after a transplant. The immune cells that induce GVL are T cells.
T cells These are important immune cells that normally help to eliminate viruses but also have an important role in preventing cancer.
T cell receptors (TCRs) These are special molecules on the surface of T cells. The T cells use them to recognise cells that are foreign, for example a cell infected by a virus or a cancerous cell.
Chimeric antigen receptors (CARs) These receptors have been created in the lab and are part T cell receptor and part antibody. The antibody part helps the receptor to better recognise cancerous cells.
Haematopoietic stem cells (HSC) These are rare cells found in the bone marrow that can make all types of blood cell. During a stem cell transplant, enough HSC have to be infused to ensure that blood can be made normally.
Gene editing This term describes several different techniques to switch one DNA sequence to another. This approach could be used to correct a faulty gene, help a gene make more of a helpful protein or conversely, prevent a gene from making a harmful protein.
Patient-reported outcome measure (PROM) The purpose of a PROM is to understand better how a treatment is affecting a person from their perspective. Increasingly, PROMs are being included in clinical trials to better understand how patients perceive the benefit of a new treatment.
Resources for patients and the public
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Euro GCT (Gene and Cell Therapy Information) |
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Thinking, Doing, Talking Science (Resources for schools and kids) |
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NHSBT Educational Resources |