The MRC Clinical Trials Unit at UCL is committed to actively involving patients and the public in our trials. All our Patient and Public Involvement (PPI) work is overseen by our PPI Group, made up of MRC CTU staff alongside seven patient representatives, with a wide range of experience in different areas. In this episode of the Trial Talk podcast, two members of the Unit’s PPI Group, Richard Stephens and Ian Newsome, discuss what PPI means to them; how they got involved as patient representatives in clinical research; and how the MRC CTU at UCL embeds PPI into our trials. Resources: • Our PPI group: www.mrcctu.ucl.ac.uk/patients-publi…our-ppi-group/ • PPI resources: www.mrcctu.ucl.ac.uk/patients-publi…ppi-resources/ • Testing Treatments: Better Research for Better Healthcare (book): www.ncbi.nlm.nih.gov/books/NBK66204/ For more information and to access the transcript: bit.ly/3KlKtak For questions or feedback on the podcast series, message us at mrcctu.engage@ucl.ac.uk.

4

5/29/2024

Researcher Lauren Herlitz and theatre maker James Baldwin talked to 14 young people in care or who are care leavers about their experiences of seeing doctors. The frank conversation covers trust in doctors, opening-up about mental health, the effects of trauma, and being judged by healthcare professionals. Lauren and James invited two experts in child health, Dr. Claire Agathou and Prof. Monica Lakhanpaul, to respond to young people's views. They talk about young people’s difficulties in accessing healthcare and why some doctors find it hard to start conversations about mental health or trauma. The conversations were recorded in person with young people, aged 13-22 years, in Nov 2022 and Apr 2023, and online with health experts in Sept 2023. This podcast was funded by the National Institute for Health and Care Research (NIHR) through the Children and Families Policy Research Unit. The views expressed are not necessarily those of the NIHR or the Department of Health and Social Care.

31

4/25/2024

Agenda: 12:30-12:35 – Welcome and introduction of the TINs (Asha Recino, Therapeutic Innovations Networks Coordinator) 12:35-12:45 – Patient and Public Involvement (PPI) in Research - An introduction (Linda von Nerée, PPI Lead at NIHR Blood and Transplant Research Unit (BTRU) in Stem Cells and Immunotherapies at UCL) 12:45-12:55– PPI engagement and benefits in gene therapy research (Matthew Walker, Consultant Neurologist at the National Hospital for Neurology and Neurosurgery) 12:55 -13:05 – Patient experience and involvement in hemophilia gene therapy studies (Luke Pembroke, Gene Therapy Patient) 13:05 -13:15 – Patient involvement in stem cell and immunotherapies for blood cancer (Gillian Murphy, Patient & Public Research Panel Member, Blood and Transplant Research Unit at UCL) 13:15- 13:25 – PPI in pre-clinical regenerative medicine research (Nick Hamilton, NIHR Clinical Lecturer, UCL) https://www.ucl.ac.uk/therapeutic-innovation-networks/join-community/subscribe-tins-newsletter

90

4/30/2021