Position: Trustee Advisor
Organisation: UK Thalassaemia Society
Area of work: Ethical Legal Social Issues
Member of: Ethical Legal Social Issues
Address: 19 The Broadway, Southgate
, London, N14 6PH, United Kingdom
Role in RD-Connect:
Chris is a member of the RD-Connect Patient and Ethics Council (RD-PEC) and the Patient Advisory Council (PAC).
Chris is a patient with beta thalassaemia major representing the UK Thalassaemia Society (UKTS) and has been a tireless patient advocate for EURORDIS and the Rare Disease community at national and international level for many years.
As a UKTS Trustee he was involved with the first ever thalassaemia clinical outcomes patient registry until 2001. His expertise includes the setting up of the National Haemoglobinopathies Register (NHR), and being the UKTS representative on the NHR commissioning group. Since then he has been directly involved in the development of surveys to assess patient quality of life. More recently, he has been leading the creation of a PROM aimed at being integrated within the NHR. Its aim is to elicit areas of inequity and on how patients experience the impact of their treatment.
His earlier work within the Sickle Cell and Thalassaemia Screening Programme Steering Group Committee have allowed him to give a patient perspective and help develop the ethics underlying screening for a genetic condition like thalassaemia, as well as on issues of “informed consent” and “informed choice”.
As one of the European Medicines Agency's (EMA) experts, affiliated to EURORDIS he has strived to increase engagement in patient-critical areas within the wider EMA regulatory framework, and has been consulted on many Health Technology Assessment (HTA) Parallel Scientific Advice sessions. He has been an invited speaker to many conferences and workshops on Access and Reimbursement and, notably, has presented the “Patient perspective on HTAs for Personalised Medicine” during the plenary session debate of the HTAi conference in Bilbao in 2012.
Closely engaged as the lead representative of his patient community in NICE Health Technology Assessments (Single and Multiple Appraisals) and in drafting national commissioning policies for standard specification of care and orphan medicinal products for thalassaemia patients.