A user‐led consultation model: making inclusion of service users in research a reality

Abstract

PurposeDisabled people who are the end‐users (EU) of health services have a poor record of inclusion, yet a major stake in the quality of scientific research that informs the development of health knowledge and interventions. In traditional rehabilitation research it has been the researcher who sets the agenda, including determining the research question, study design and methods, and who controls dissemination of findings. This paper aims to describe the development of an EU research consultation committee and to describe the evaluation protocol used to assess the effectiveness of the committee.Design/methodology/approachThe paper describes the context and development of an EU research consultation committee (the committee) to promote collaboration between researchers and lay‐EUs within a research organization in New Zealand. It also describes the qualitative evaluation protocol to be used to assess the effectiveness of the committee over the first 12 months of operation in order to refine its process and procedures.FindingsThe paper discusses the issues and challenges involved in achieving collaboration between researchers and EUs in the rehabilitation research space and describes this consultation model as a positive example of making inclusion a reality. Challenges include building research capacity within the EU community and development of real models of collaboration and partnership in rehabilitation research.Originality/valueIt is argued that the integrity and relevance of clinical research is enhanced by the involvement of EUs in all aspects of the research process.