Table 6

Reported training content for researchers and PRPs

Soft skillsTraining content for researchersTraining content for PRPs
General training
  • Provide guidance on how to engage lay audiences in research

  • Guidance and support from experienced PRPs19

  • Individual support and training provided upon request25

Communication skills training
  • Exercises to improve communicating research findings to non-scientists

  • Strategies to avoid jargon and define terms for better understanding of research discussions by PRPs

  • Practising communication skills: respectful dialogue, active listening and knowledge checks for successful PRP engagement

  • Communication skills training45

  • Understanding the advantages of involving PRP in research

  • Understanding collaborative research principles

  • Training courses on their own45

  • One-on-one training with mentors38

  • Individual support and training tailored to needs of the individual or specific research activities4 15 24

  • Intensive training programme in research for PRPs, for example, 2-day training as a PRP in research63

  • Preparatory course for PRPs, for example, special training by the German League against Rheumatism45

  • Continued education opportunities for PRPs, for example,

    courses through EULAR School of Rheumatology5 69

  • Educational webinars, workshops and feedback sessions, for example, OMERACT,5 EUPATI

  • Resources available on websites for researchers

  • Online training on patient participation in research62

  • Reference materials for PRP involvement in research, for example, EULAR patient involvement reference cards51 70

  • Glossaries for research terminology, for example, glossaries on NIH and CARRA websites38

  • Glossary and lay summaries of sessions in conferences or prior to meetings,25 for example, OMERACT19

  • Extensive library of engagement training resources, for example, PCORI engagement training materials38

  • Comprehensive training manual for PRPs,37 for example, EUPATI

Confidence building
  • Building confidence in engaging young individuals in research activities

Engagement of PRPs
  • Practising role-playing for the first introduction meetings between PRPs and researchers

  • Identification of opportunities to increase PRP involvement

  • CARRA, Childhood Arthritis and Rheumatology Research Alliance; EULAR, European Alliance of Associations for Rheumatology; EUPATI, European Patients' Academy on Therapeutic Innovation; NIH, National Institute of Health; OMERACT, Outcome Measures in Rheumatology; PCORI, Patient-Centered Outcomes Research Institute; PRP, patient research partner.