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Researcher and patient experiences of co-presenting research to people living with systemic sclerosis at a patient conference: content analysis of interviews.

Amanda WurzKelsey EllisJulia NordlundMarie-Eve CarrierVanessa CookAmy GietzenClaire AdamsElsa-Lynn NassarDanielle B RiceCatherine FortuneGenevieve GuillotTracy MieszczakMichelle RichardMaureen SauveBrett D Thombs
Published in: Research involvement and engagement (2024)
Findings from this study suggest that the co-presenting experience was a rewarding and enjoyable way to tailor research dissemination to patients. We identified a patient-centred approach and meaningful and prolonged patient engagement as essential elements underlying co-presenting success.
Keyphrases
  • case report
  • systemic sclerosis
  • end stage renal disease
  • interstitial lung disease
  • chronic kidney disease
  • ejection fraction
  • social media
  • rheumatoid arthritis