Table 2

Facilitating and inhibiting factors for structural involvement of patients

Facilitating factorsInhibiting factors
Strong leadership

  • Endorsement by key opinion leaders

  • Endorsement by key opinion leaders

  • Long-term financial and organisational commitment

  • Ambassadors of participative research

  • Acknowledgement of contributions

Selection procedure

  • Recruitment through clinicians

  • Proportional representation

  • Selection criteria

  • Learning curve

Conference design

  • Multistakeholder approach

  • Spirit of Outcome Measures in Rheumatology (OMERACT)

  • Full and equal participation

  • Interactive breakouts

  • Structural involvement

Facilitative moderation style

  • Open dialogue

  • Deliberate encouragement

  • Respect of confidentiality

  • Clear communication

  • Sensitivity to patient values

Individualised support

  • Preconference information pack

  • Training

  • Personalised programmes

  • Buddy system

  • Glossary

  • Preconference involvement

Intensity of the programme

  • Physically challenging

  • Intercontinental travel

  • Accessibility

  • Mentally challenging

  • Language and terminology

  • Remote themes

Scepticism

  • Doubts about added value

  • Risk of tokenism

  • Imperceptibility of contributions

  • Lack of continuity

Composition patient group

  • Lack of representativeness

  • Pseudoprofessionalism