10am – 5.30 pm, 10 June 2011.
University College London, Foster Court (Room 114)
AGENDA
9.30
Registration (in Foster Court Room 113, adjacent to main meeting room)
10.00 Workshop opens: morning plenary session
Professor Malcolm Grant, UCL Provost - Welcome
10.10-11.00 Research Reports Chair: Professor Hugh Middleton, School of Sociology
and Social Policy, Nottingham, and NHS Consultant Psychiatrist
Panel presentations by researchers (social science and biomedical) and participating research
volunteers: (3 x 5-10 min. presentations)
 Norma Morris, Jeremy Hebden, Sharon Fullerton and Brian Balmer (UCL) - Optical
Imaging participant-involvement project - ‘Just bodies’- or partners in research?
 Alex Leff (consultant neurologist, UCL Institute of Neurology) and Mark Jarvis
(participating patient) – Treating patients using the internet
 Lorena Teran (University of California, Irvine) – Research participant engagement at
University of California, Irvine
10.40 Discussion session: Questions and contributions from the floor
11.00 Coffee Break
11.30-12.45
experience.
How organised groups may contribute to the research participant’s
Chair: Dr Louise Wood, Deputy Director, R&D Directorate, DoH
11.30 Panel 1 The contribution of Patient Groups and PPI: (3 x 5-10 min. presentations)
 Dr Adrienne Morgan, Maggie Wilcox (Independent Cancer Patients’ Voice - ICPV) –
ICPV’s role and policies
 Dr Jill Shawe (Margaret Pyke Centre for Sexual and Reproductive Health) - Research
and Innovation Forum
 Dr Naomi Pfeffer (UCL) – Reflections on ‘CERES’ (Consumers for Ethics in Research)
12.00 – 12.20 Questions and discussion
12 20 Panel 2. Governance, Sponsorship and the participant: (2 x 5-10 min. presentations)
 Dr Jane Cope , Director, National Cancer Research Institute (NCRI)  Dr Susan Kerrison, (UCL/UCLH Joint Unit) - Research Governance and PPI - the view
from a large Trust
12.45 - 13.00 Questions and discussion
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13.00 - 14.15 Lunch
14.15 BREAK-OUT SESSIONS
Convene in Room 114 where Workshop participants will be assigned to one of 3 groups, who
will discuss and report back to the Plenary Session after the tea-break (see below) on the
following questions, reflecting themes aired in the morning’s presentations and discussion.
Group A
Venue: Main Meeting Room - Foster Court Room 114
Chair: Carolyn Morris (COMPASS User Involvement Group)
- Opening remarks: Maryrose Tarpey (INVOLVE)
Does Patient and Public Involvement (PPI) , as presently practised, affect the experience or
level of involvement of actual ‘research participants’?
Group B
Venue: Foster Court Room 113
Chair: Dr Brian Balmer (UCL)
- Opening remarks: Dr Oonagh Corrigan, (Associate Professor in Sociology and Ethics,
University of Plymouth)
Are the people enrolled in a clinical study best (or most accurately) described as participants,
collaborators or research subjects?
Group C
Venue: Foster Court Room 112
Chair: Professor Ulf Schmidt (University of Kent)
- Opening remarks: Dr Janet Wisely, (Director, National Research Ethics Service)
Government policy plans to increase the proportion of patients taking part in research. What
are the implications of this for patients and research participants?
15.30 – 16.00 Coffee Break
16.00 Plenary Session:
Chair: Professor Graham Scambler (Professor of Medical
Sociology, Research Department of Infection & Population Health, UCL)
1. Professor Stuart Blume (University of Amsterdam and Innovia Foundation) – The Politics
of Patient Participation
2. Reports from Break-out Groups (Chairmen/Chairwomen or Rapporteurs report back on the
Group’s discussion)
(About 15 minutes for each group- (to include chairman/rapporteurs’ report, clarifying and
supplementary comment and specific questions)
17.10-17.30 Questions, discussion and where next.
17.30 Close, and adjourn for wine and soft drinks in the Terrace Restaurant, Wilkins Building
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