Patients and health professionals working together to improve clinical research: Where are we going?☆
Abstract
The pace of active involvement of patients in clinical research has increased over the last 10–15 years. Advocacy for this engagement between patients and health professionals is briefly traced, based on the author’s experiences both as an independent advocate and as co-founder and chairman (1995–1999) of the Consumers’ Advisory Group for Clinical Trials (CAG-CT). A brief history is outlined. As the benefits and minor drawbacks of collaborative working have become increasingly evident, attitudes have changed and methodologies have developed. A new professionalism in relationships with doctors is being sought: common vocabularies need to be defined. Some research governance problems are identified: forward thinking to solve them is advocated.
Keywords: Patient involvement in clinical research, Independent facilitation in collaborative research, Relevant hypotheses and endpoints, Research governance, Semantic interoperability
☆ From a presentation given at the 5th European Breast Cancer Conference (EBCC) Nice, France, 21st–25th March 2006 in a Europa Donna Workshop 24th March 2006, entitled: ‘Should advocates be involved in the design of clinical trials?’ against the given title: ‘Patient involvement in research (including the work of the Consumers‘ Advisory Group for Clinical Trials (CAG-CT)’.
PII: S0959-8049(06)00522-3
doi:10.1016/j.ejca.2006.05.022
© 2006 Elsevier Ltd. All rights reserved.
