Close
Patients, carers and members of the public bring valuable views and the lived experience to research. This听ensures new or听better treatments meet听the听needs of patients. We involved patients and the public in research as active partners and听in the development of novel treatment approaches at听the Blood and Transplant Research Unit (BTRU) in Stem Cells and Immunotherapies at 皇家华人.
Patient & Public Involvement in lab-based and early clinical research workshop for researcher and Patient &听Public Research Panel members听on 12 March 2021
听
Our dedicated Patient and Public Research听Panel members and other Patient Advisory Groups provided valuable insights to ongoing research in our unit. The Panel consisted听of ten听members who added听a wealth of skills and experiences to stem cell and immunotherapy research to better treat听cancer of the blood and lymph nodes as well as inherited genetic听disorders.
Working with our Patient & Public Research听Panel听members on ways to integrate Patient and Public Involvement in the proposed research was very rewarding and led to some novel ideas to add real value to our programme.听 鈥� Professor Karl Peggs, Co-Director of the UCL BTRU
Involving听patient/public partners in lab-based and first-in-human clinical studies felt challenging initially, and we are immensely grateful听to the guidance and dedication of Patient and Public Research Panel members who worked听with researchers and the PPIE Lead.
Patient and public partners were involved in the governance, helped to shape communication, training, and first-in-human research studies:
- The BBC Two documentary 鈥榃ar in the Blood鈥� follows two patients taking part in first-in-human CAR T-cell therapy studies and portraits researchers working on this treatment. Watch
Image credit: BBC Two/Minnow films听
听
- The animation 鈥楪ene Therapy explained: Changing our body鈥檚 recipe to treat disease鈥� was produced with the Young Person鈥檚 Advisory Group at Great Ormond Street Hospital. !
Image credit: NIHR BTRU in Stem Cells and Immunotherapies at 皇家华人听
听
- Various blog posts, lay summaries and the twitter account @BTRUinStemCells communicated research to a patient/public audience run by a patient partner and PPIE Lead
- Contributing to governance in Theme Lead, Scientific Advisory Group and quarterly BTRU PPI meetings
- Representing patient perspectives in several CAR T-cell study management groups听
- Providing feedback on patient facing materials for new CAR T-cell studies. The Health Research Authority uses extracts of one participant information sheet in training for Research Ethics Committee members to demonstrate good quality documentation听
- Revising the Advance Care Planning booklet for patients taking part in CAR-T cell studies听
- Shaping content for a first-in-human cancer study patient information evening
鈥�鈥榃hat you guys are doing is a great example of real patient engagement.听 I think we need to use this as best practice.鈥櫶� -Patient partner
听
- Advising on ethical questions and addressing COVID-19 in a gene therapy study听
- Planning and delivering a research engagement event for sickle cell disorder with a sickle cell patient and the Sickle Cell Society. Read the
鈥�As I expected, the session was very informative and such a positive experience. As a parent with a child with sickle cell disease, it was empowering to get information and share knowledge.鈥櫶� -Attendee听
听
- Producing different trainings, including PPI in lab-based and pre-clinical research, which is now offered by the 听
鈥�All early-stage biomedical researchers need to be exposed to PPI training and activities鈥櫶� -BTRU early career researcher听
In one word, Patient and Public Research Panel members described their experience as:
Please note that funding for this unit ended on 31 July 2022.
