Good practices of patient involvement in clinical research
Whilst scanning the literature a number of good practices were identified that described the partnership between patient organisations and clinical researchers. A number of examples have been described below.
The Aids/HIV movement: Over the years HIV groups have become successful advocates in clinical trial development (62).
OMERACT: an initiative of the worldwide rheumatology network; since 2002 patients are engaged actively. Patients helped in putting the subject of fatigue in Rheumatoid Arthritis on the Rheumatology research agenda (63)(64).
PXE International: A Biotech company set up by the parents of two children with PXE, raised funds for the studies into the genetic markers for PXE. Since then they have been the driving force behind a blood/tissue bank as well as being involved in research, patenting of genes and the conducting of several research studies (65).
AFM: The French organisation for Muscular diseases. An organisation that combines a patient organisations as well as a funding and research organisation in one. Funds multiple studies in rare diseases as well as raising the money for these studies and informing patients throughout France on clinical research, therapy opportunities etc. (16).
CAG-CT: consumers advisory Group in the UK for clinical trials, prioritised outcomes patients, clinicians and researchers wanted in clinical trials. Provides training for patient advocates (66).
EUROPADONNA: European Patient Organisation for Breast Cancer; actively involved in training patient advocates on the topic of clinical research, as well as providing a booklet on clinical trials. EUROPADONNA stimulates advocates to be actively involved in clinical research (67).
Asthma & COPD organisations in the Netherlands: assessed ability of patients to prioritize research. Organised Focus groups, questionnaires, feedback meetings with patients to prioritise their research topics for funding. Concluded that patients are able to prioritize research targets successfully (68).
Association of stroke sufferers (UK)(43). Involved stroke patients and carers in the design of a study. 3 focus groups, questionnaire. Identified outcome measures that are important to the stroke population but often not addressed by research.