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Outcomes in clinical research - whose responsibility ?

A meeting organised jointly by the James Lind Alliance, the Social Science Research Unit, Institute of Education, University of London and the Royal College of Nursing Research Institute, School of Health and Social Sciences, University of Warwick.

The meeting was held at the Institute of Education, University of London on 20th November 2008

The meeting was convened to promote debate about the role of patients, clinicians and researchers in determining clinical research outcomes.

For a report of this event, 'Outcomes in clinical research - whose responsibility?', written by PatientView, click here (PDF)

Presentation abstracts and slides are available below:

Morning session:

Chair:
Sir Iain Chalmers, Coordinator, Database of Uncertainties about the Effects of Treatment
James Lind Initiative

"Responding to the patient's voice: the importance of patient-reported outcomes"
Dr Kirstie Haywood, Senior Research Fellow, Royal College of Nursing Research Institute, School of Health and Social Sciences, University of Warwick
[slides – PPS 119kb – abstract PDF - Reference list/Bibliography PDF]

"New ways of measuring patient perspectives in healthcare systems"
Dr Alex Wyke, Managing Director. PatientView
[slides - PPS 487kb - abstract PDF]

"WHO’s quality of life?"
Professor Suzy Skevington, Professor of Health Psychology, Director, World Health Organisation Centre for the Study of Quality of Life, University of Bath
[slides unavailable - abstract PDF]

"Designing user-valued and user-generated outcome measures in mental health"
Dr Diana Rose, Senior Lecturer in User-Led Research and Co-director Service User Research Enterprise (SURE), Institute of Psychiatry, King's College London
[slides - PPS 75kb - abstract PDF]

"Choosing outcomes and measures - for doing and using research"
Professor Sandy Oliver, Professor of Public Policy, Deputy Director, Social Science Research Unit, Institute of Education, University of London
[slides - PPS 2,871kb - abstract PDF]

Afternoon Session:

Chair:
Lester Firkins, Chair, Strategy and Development Group, James Lind Alliance

Poster presentations and discussion groups:

For summary of feedback from Poster discussions click here - PDF

1. Back Injury "Pain scales measure patient unimportant outcomes"
Michael Power, Clinical Author, Sowerby Centre for Health Informatics at Newcastle (SCHIN)
[Poster - PDF 2,649kb]

2. Children’s Health "A systematic review of studies that determine which outcomes to measure in clinical trials in children"
Ian Sinha, Clinical Research Fellow, Medicines for Children Research Network Clinical Trial Unit, Institute of Child Health, Alder Hey Children's NHS Foundation Trust, Liverpool
[Poster - PDF 484kb]

3. Multiple Sclerosis "Disability and magnetic resonance imaging as outcome measures in multiple sclerosis clinical trials"
Ralf Strobl, Statistician at the Sylvia Lawry Centre for Multiple Sclerosis Research, Munich
[Poster - PDF 400kb]

4. Mental Health, Schizophrenia "Outcomes in schizophrenia research - would you recognise them?"
Mark Fenton, Editor, Database of Uncertainties about the Effects of Treatments (DUETs), James Lind Initiative, Oxford
[Poster - PDF 55kb]

5. Mental Health "User-valued outcome measures in acute care in mental health"
Jo Evans, Service User Researcher, and Caroline Laker, Nurse Researcher, Service User Research Enterprise (SURE), Institute of Psychiatry, London
[Poster - PDF 1,141kb]

6. ME/Chronic Fatigue Syndrome "Health status and quality of life in Myalgic Encephalopathy / Chronic Fatigue Syndrome (ME/CFS): a structured review of patient-reported outcome measures (PROMs)"
Kirstie Haywood, Senior Research Fellow, RCN Research Institute, School of Health & Social Studies, University of Warwick
[Poster - PDF 28kb]

7. Urinary Incontinence "James Lind Alliance Priority Setting Partnership on Urinary Incontinence"
Brian Buckley, Primary Care Researcher, Cochrane Fellow and Chairman of the Bladder and Bowel Foundation (formerly Incontact and the Continence Foundation)
[Poster - PDF 41kb]

8. Skin Disease "Patient oriented outcome measures for use in dermatology trials: experiences from the Centre of Evidence Based Dermatology"
Kim Thomas, Associate Professor (non-clinical) & Deputy Director of the Centre of Evidence Based Dermatology, University of Nottingham
[Poster - PDF 73kb]

9. Epilepsy "Patient groups’ priorities for research in the area of epilepsy"
Alex Wyke, Managing Director, PatientView
[Poster - PDF 43kb]

10. Pregnancy and Childbirth
Lelia Duley, Professor of Obstetric Epidemiology, University of Leeds
[Poster - PDF 37kb]

11. Sexual Health "Identifying and prioritising outcomes in sexual health: using formal consensus development methods"
Rebecca Rees, RCUK Academic Fellow, EPPI-Centre, Social Science Research Unit, Institute of Education, University of London
[Poster - PDF 98kb]

12. Chronic Kidney Disease "Patients’ priorities for health research: focus group study of patients with chronic kidney disease"
Allison Tong, Research Fellow, Centre for Kidney Research, Children's Hospital, Westmead, Australia
[Poster - PDF 69kb]