Patient and Public Involvement

Patients, carers and members of the public bring valuable views and the lived experience to research. This ensures new or better treatments meet the needs of patients. We involved patients and the public in research as active partners and in the development of novel treatment approaches at the Blood and Transplant Research Unit (BTRU) in Stem Cells and Immunotherapies at UCL.

(Patient & Public Involvement in lab-based and early clinical research workshop for researcher and Patient & Public Research Panel members on 12 March 2021.)

Our dedicated Patient and Public Research Panel members and other Patient Advisory Groups provided valuable insights to ongoing research in our unit. The Panel consisted of ten members who added a wealth of skills and experiences to stem cell and immunotherapy research to better treat cancer of the blood and lymph nodes as well as inherited genetic disorders.

Involving patient/public partners in lab-based and first-in-human clinical studies felt challenging initially, and we are immensely grateful to the guidance and dedication of Patient and Public Research Panel members who worked 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.

• 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.
• 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.
• Revising the Advance Care Planning booklet for patients taking part in CAR-T cell studies.
• Shaping content for a first-in-human cancer study patient information evening.
• Advising on ethical questions and addressing COVID-19 in a gene therapy study 
• Planning and delivering a research engagement event for sickle cell disorder with a sickle cell patient and the Sickle Cell Society. Read the event summary.
• Producing different trainings, including PPI in lab-based and pre-clinical research, which is now offered by the UCL Hospitals Biomedical Research Centre.

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.