title: Patient involvement in research programming and implementation: A responsive evaluation of the Dialogue Model for research agenda setting.
abstract: BACKGROUND
  The Dialogue Model for research agenda-setting, involving multiple stakeholders including patients, was developed and validated in the Netherlands. However, there is little insight into whether and how patient involvement is sustained during the programming and implementation of research agendas.
  
  
  OBJECTIVE
  To understand how the Dialogue Model can be optimised by focusing on programming and implementation, in order to stimulate the inclusion of (the perspectives of) patients in research.
  
  
  METHODS
  A responsive evaluation of the programming and implementation phases of nine agenda-setting projects that had used the Dialogue Model for agenda-setting was conducted. Fifty-four semi-structured interviews were held with different stakeholders (patients, researchers, funding agencies). Three focus groups with patients, funding agencies and researchers (16 participants) were organized to validate the findings.
  
  
  RESULTS
  Patient involvement in programming and implementation of the research agendas was limited. This was partly related to poor programming and implementation, partly to pitfalls in earlier phases of the agenda-setting. Optimization of the Dialogue Model is possible by attending to the nature of the agenda and its intended use in earlier phases. Attention should also be given to the ambassadors and intended users of agenda topics. Support is needed during programming and implementation to organize patient involvement and adapt organizational structures like review procedures. In all phases the attitude to patient involvement, stakeholder participation, especially of researchers, and formal and informal relationships between parties need to be addressed to build a strong relationship with a shared goal.
  
  
  CONCLUSIONS
  Patient involvement in agenda-setting is not automatically followed by patient involvement in programming and implementation. More attention should be paid, in earlier stages, to the attitude and engagement of researchers and funding agencies.
authors.affiliation: EMGO+ Institute for Health and Care Research, VU University Medical Centre, Amsterdam, The Netherlands.
authors.forename: Tineke A
authors.initials: TA
authors.lastname: Abma
authors.affiliation: Faculty of Earth and Life Science, Athena Institute for Research on Innovation and Communication in Health and Life Sciences, VU University, Amsterdam, The Netherlands.
authors.forename: Carina A C M
authors.initials: CA
authors.lastname: Pittens
authors.affiliation: EMGO+ Institute for Health and Care Research, VU University Medical Centre, Amsterdam, The Netherlands.
authors.forename: Merel
authors.initials: M
authors.lastname: Visse
authors.affiliation: Faculty of Earth and Life Science, Athena Institute for Research on Innovation and Communication in Health and Life Sciences, VU University, Amsterdam, The Netherlands.
authors.forename: Janneke E
authors.initials: JE
authors.lastname: Elberse
authors.affiliation: Faculty of Earth and Life Science, Athena Institute for Research on Innovation and Communication in Health and Life Sciences, VU University, Amsterdam, The Netherlands.
authors.forename: Jacqueline E W
authors.initials: JE
authors.lastname: Broerse
mesh_terms: D005260:Female; D006284:Health Plan Implementation; D006302:Health Services Research / Q000379:methods*; D006801:Humans; D008875:Middle Aged; D009426:Netherlands; D010358:Patient Participation / Q000379:methods*; D012107:Research Design
keywords: Dialogue Model; priority setting; research agenda setting; research programming and implementation; responsive evaluation