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Should Patients tell Researchers what to do? If so, how?

A meeting organised jointly by the James Lind Alliance and the Association of Medical Research Charities at The Wellcome Trust, London on 17 September 2007

The meeting was convened by the James Lind Alliance and the Association of Medical Research Charities to promote debate about the role of patients in deciding what clinical research is important. Case studies were provided as examples of where such engagement has positively changed the research agenda, and the methods that were used.

To see Blog of the event written by Paul Chinnock, click following link: http://www.plos.org/cms/blog/12

Presentation abstracts and slides are available below:

Morning Session:

Chair:
Philippa Yeeles, Programme Manager, UK Clinical Research Collaboration

“Stormy waters, or just uncharted?”
[slides – PPS 9,100 kb – abstract PDF]
Simon Denegri, Chief Executive, Association of Medical Research Charities

“An industry view”
[slides – PPS 207 kb – abstract PDF]
Richard Tiner, Medical Director, Association of the British Pharmaceutical Industry

“Researchers should ignore patients”
[slides – PPS 99 kb – abstract PDF]
Mark Welfare, Consultant Gastroenterologist/Senior Lecturer, Northumbria Healthcare NHS Trust

Case studies:

1. “Patient involvement in Rheumatoid Arthritis Research”
[slides – PPS 9,807 kb – abstract PDF]
John R Kirwan, Consultant Rheumatologist and Professor of Rheumatic Diseases, Bristol Royal Infirmary
Pam Richards, Chair, Patients Advisory Group – Rheumatology Department, Bristol Royal Infirmary

2. “Identifying the treatment uncertainties of people with asthma”
[slides – PPS 5,366 kb – abstract PDF]
Colin Gelder, Consultant Respiratory Physician, Penarth; Asthma DUETS editor
[slides – PPS 622 kb – abstract PDF]
Samantha Walker, Research Liaison Officer, Asthma UK
Ivor Cook, Asthma Spokesperson

Afternoon Session:

Chair:
Lester Firkins, Chair, JLA Monitoring and Implementation Group

“Putting the public at the heart of research”
[slides – PPS 3,355 kb – abstract PDF]
Amanda Burls, Director, The International Network for Knowledge about Wellbeing, (ThinkWell)

Debate: Can the research drivers and interest of patients, industry and the NHS, be reconciled?

Panel members:
• Brian Buckley, Chair, Incontact (Action on Incontinence) and Primary Care Researcher
• Mark Fenton, Editor, Database of Uncertainties about the Effects of Treatments (DUETs)
• Marianne Miles, Patient and Public Involvement Lead, UK Clinical Research Network
• Sophie Petit-Zeman, Head of External Relations, Association of Medical Research Charities
• Pam Richards, Chair of the Patients Advisory Group – Rheumatology Department, Bristol Royal Infirmary
• Richard Tiner, Medical Director, Association of the British Pharmaceutical Industry

For summary of feedback from discussions, and panel discussion: [Please click here - PDF}