Stages of involvement

PPI can serve different objectives at each and every stage of a research project. Below you will find several examples.

Identification and prioritization of research topics

  • Help define research priorities
  • Be consulted on research topics and priorities that are important to patients as service users
  • Collaborate with researchers to identify research topics
  • Identify research topics themselves
  • Develop and revise grant proposals

Study design

  • Inform the design of a research study
  • Clarify the research question and affirm its importance
  • Assist in ensuring that the research is ethical and acceptable to patients
  • Ensure that the methods chosen are appropriate for the patients
  • Assist in the design of the detailed protocol, including comprehensible consent forms
  • Draft contracts and other guidance documents
  • Assist in creating a recruitment strategy
  • Review and comment on proposed questionnaires and data collection methods

Research execution: Data collection and recruitment

  • Provide guidance throughout the research process
  • Assist in the completion of patient information and consent forms
  • Produce patient-friendly research updates
  • (Assist in) conducting interviews and surveys and other data collection methods

Data analysis and interpretation

  • Assist the research team in developing themes from the obtained data (e.g. in working, focus, or steering groups)
  • Be consulted to see if patients interpret the data in the same way as the research team
  • Analyse data and compare with existing literature

Communication and dissemination of results

  • Advise on the different ways to disseminate results
  • Present research results together with researchers
  • Write information or summarize results for local patient groups, hospitals, etc.
  • Co-author publications of research results
  • Draft and proofread documents, especially lay versions
  • Help to disseminate research results within their formal/informal networks


  • Ensure that research leads to action
  • Establish relationships with key agencies and policy makers