Are guidelines following the guidelines?
2010 Conference
Abstract:
This will be a training and discussion session. We shall describe a collaborative project between two international patient organisations, to follow up the extent of stakeholder involvement (multi-disciplinary clinical and patient involvement) in the development of clinical guidelines by professional guideline development bodies. We liaised with other patient organisations in our disease areas seeking their support and corresponded with a number of guideline development bodies. As a result there has been increased activity on the part of professional bodies to involve patients and patient representatives in Europe.
Participants may learn:
- how patients and patient representatives can usefully contribute to the development of clinical guidelines
- how to assess who was involved and how meaningful the involvement was
- to explore ways of adapting and applying the ideas to their own disease area.
Authors
Birch ~ Judy
Chief Executive, Pelvic Pain Support Network Judy Birch founded the Pelvic Pain Support Network in 2006. She has given presentations to clinicians and researchers at several medical congresses and workshops, national and international, and spoken as a patient advocate to policy makers in the UK and European Parliaments. She has represented patients at the National Institute for Health and Clinical Excellence (NICE) on various committees.
View all articles by this authorFearon-Low ~ Ella
Capacity Building Director, International Alliance of Patients' Organisations Ella Fearon- Low is Capacity Building Director for the International Alliance of Patient's Organisations. Her role is liasing with patients' organisations worldwide and supporting them in developing skills to represent patients effectively.
View all articles by this authorvan Poelgeest-Pomfret ~ Lynne
Vice-President, World Federation of Incontinent Patients Lynne van Poelgeest-Pomfret is Chair, Interstitiële Cystitis Patiëntenvereniging (ICP), Netherlands and Vice-President of the World Federation of Incontinence Patients. She represents these organisations as a patient advocate at clinical and policy making meetings worldwide.
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