title: Patients/carers and clinicians can set joint priorities for research in cleft lip and palate.
abstract: The James Lind Alliance is a not-for-profit organisation that was established in 2004 in the United Kingdom with financial support from the Medical Research Council and the Department of Health. It brings together patients, carers and clinicians to identify and prioritise the uncertainties, or 'unanswered questions,' about the effects of treatments that they agree are most important. This information helps to ensure that those who fund health research are aware of what matters to both patients and clinicians. The James Lind Alliance has now facilitated these "priority setting partnerships" in several conditions as diverse as asthma and schizophrenia, and recently completed a partnership to gather and prioritise unanswered questions relating to clefts of the lip and/or palate, working with those affected, their parents/carers and healthcare professionals. As the James Lind Alliance prepares to transfer to a new home within the National Institute for Health Research Evaluation, Trials and Studies Coordinating Centre, this article tells the story of the James Lind Alliance based on a presentation given by Lester Firkins at the European Society of Paediatric Otolaryngology in Amsterdam, May 2012, entitled "Who's life is it anyway?" and the completion of the James Lind Alliance Priority Setting Partnership in cleft lip and palate research.
authors.forename: Sophie
authors.initials: S
authors.lastname: Petit-Zeman
authors.forename: Katherine
authors.initials: K
authors.lastname: Cowan
mesh_terms: D035843:Biomedical Research; D002971:Cleft Lip / Q000601:surgery*; D006282:Health Personnel; D006801:Humans; D012106:Research; D035501:Uncertainty