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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.
Working with our Patient & Public Research Panel 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. – Professor Karl Peggs, Co-Director of the UCL BTRU
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:
- The BBC Two documentary ‘War in the Blood’ follows two patients taking part in first-in-human CAR T-cell therapy studies and portraits researchers working on this treatment. Watch ‘War in the Blood’ at Vimeo
Image credit: BBC Two/Minnow films
- The animation ‘Gene Therapy explained: Changing our body’s recipe to treat disease’ was produced with the Young Person’s Advisory Group at Great Ormond Street Hospital. Tune in!
Image credit: NIHR BTRU in Stem Cells and Immunotherapies at UCL
- 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
“‘What you guys are doing is a great example of real patient engagement. I think we need to use this as best practice.’ -Patient partner
- 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
“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.’ -Attendee
- Blog post on research communication and involvement
- Producing different trainings, including PPI in lab-based and pre-clinical research, which is now offered by the UCL Hospitals Biomedical Research Centre
“All early-stage biomedical researchers need to be exposed to PPI training and activities’ -BTRU early career researcher
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.
More information
- Examples of our Patient and Public Research Panel being involved in research as part of the Translational Research Office report: Celebrating 10 successful years (March 2021), page 14
- Blog post about Patient and Public Involvement (PPI) in advanced therapies (new medical products such as cell and gene therapies or tissue engineering) webinar on 29 April 2021
- Blog post about Patient and Public Involvement in our funding extension application
