Patient participation in health research: research with and for people with spinal cord injuries

Qual Health Res. 2005 Dec;15(10):1310-28. doi: 10.1177/1049732305282382.


Traditionally, patients are rarely seen as partners in health research; their influence on priority setting, research design, the undertaking of research, and interpretation and dissemination of findings was marginal. Nowadays, health researchers, funding agencies, governments, and patient organizations are beginning to acknowledge that the passive role of patients in health research is no longer satisfactory. The emerging commitment and consensus concerning the aims and features of patient participation in research have created a need for an appropriate method to engage patients as partners in health research. In this article, the author argues that a responsive-constructivist approach to evaluation fits with the aims and features of patient participation. She illustrates its potential with a case example that concerns a dialogue among patients and (clinical) researchers in the field of spinal cord injuries. She reflects on learning experiences and the (un)expected difficulties and potentials in creating social conditions for patient participation in health research.

MeSH terms

  • Biomedical Research*
  • Cooperative Behavior
  • Humans
  • Narration
  • Netherlands
  • Organizational Case Studies
  • Patient Participation / psychology*
  • Physician-Patient Relations*
  • Quality of Life
  • Researcher-Subject Relations*
  • Spinal Cord Injuries / psychology*
  • Spinal Cord Injuries / rehabilitation
  • Time
  • Voluntary Health Agencies