Table 2

Activities and roles of PRPs

Areas of involvementActivities and roles of PRPs
Development/design
  • Guidelines development,22 including voting on draft recommendations24

  • PRO development5 21

  • Grant application3

  • Survey/questionnaire development2 3

  • Interview guide66

  • Tools (educational or others)3 4 57

  • Patient-facing materials (develop patient information sheets, pamphlets, glossary, distribution and use of booklet, website, poster)3 6 42

  • Developing or reviewing (recommendations) lay summaries4 5

Leadership
  • Establishing a patient association5

Co-leadership role
  • Member of steering committee7 (eg, EULAR, FOREUM,17 GRAPPA61)

  • Member of working groups (eg, GRAPPA8)

Coauthorship
  • Writing research papers (coauthoring)3

  • Writing research protocol56

Education
  • Trainer at a training programme6

  • Mentoring less-experienced PRPs38

Planning
  • Strategic planning42 47

  • Event planning: organise, communicate52

  • Interview schedules3

Facilitation
  • Session at a conference53

  • Held sessions in a meeting68

Reviewer
  • Grant application2

  • Research projects (ongoing)5 58

  • Summaries of scientific publications5

Recruitment
  • Support recruitment of PRPs (to a project or association)3 6 67

Evaluation
  • Training programme6

Participation
  • In dissemination of research results3 7

  • Attendance of conferences and scientific meetings3 40

  • In meetings2, discussions66

  • In quality of care improvement programmes51 60

  • EULAR, European Alliance of Associations for Rheumatology; FOREUM, Foundation for Research in Rheumatology; GRAPPA, Group for Research and Assessment of Psoriasis and Psoriatic Arthritis; PRO, patient-reported outcome; PRPs, patient research partners.