The Guardian are holding an online debate this Thursday focused on engaging patients in research. Great line up and should cover some interesting ground – as the Health Research Authority gets up and running its remit includes effective patient and public involvement. And the report summing up next steps in developing the UK’s research regulatory system published last week emphasised how important it is for patients and the public to have a say throughout the process of designing and regulating research to ensure we get the right balance – allowing research to go ahead and ensuring it is the research we want, conducted safely, ethically and with public confidence.
Online between 12pm and 2pm will be:
Simon Denegri is the national director for public participation and engagement in research at the National Institute for Health Research(NIHR). He is also chair of INVOLVE - an organisation supporting active public involvement in NHS research. Previously he was chief executive ofAssociation of Medical Research Charities (AMRC).
Joann Leeding is communications manager in the research and development team at Cambridge university NHS foundation trust. Her role involves informing the public about biomedical research taking place on the campus, organising patient and public awareness events and recruiting members of the public to ethics panels.
Richard Stephens is a survivor of two cancers, basal cell carcinoma and Hodgkin’s Lymphoma. Part of his Hodgkin’s treatment included a stem cell harvest and a PET scan delivered as part of a clinical trial. He has taken part in two other clinical trials (both drugs trials) as part of his treatments.
Dr Simon Ridley is head of research at Alzheimers Research UK and follows new developments in dementia research. Dr Ridley is also regular media spokesman on research matters.
Elaine Taylor-Whilde is chief executive of Nine Health CIC and former clinical research lead at the NHS information centre. She is also a member of the national nursing informatics strategic taskforce.
Susan Hamer is organisational and workforce development director at the NIHR Clinical Research Network. For the past two years, she has held the post of director of nursing, midwifery and allied health professionals at Connecting for Health.
Margaret Cooper is research and development director at university hospital of south Manchester NHS foundation trust. She has 15 years experience in research across various roles, from starting as a research nurse, to working as a research and development and network manager
If you want a preview of some of the topics that might come up, Simon Denegri has just posted a speech he gave last week about public involvement in research.