Patient partnership in medical research: an important consideration for systemic lupus erythematosus research in Australia: a patient perspective

Research output: Contribution to journalLetterpeer-review

Abstract

Sir,

I have presented at national and international conferences for seven years – first as a doctoral candidate, and since, as an active contributor in my own field of research. Yet, by far the most challenging presentation I have given was most recently as a patient, at the 12th International Congress on Systemic Lupus Erythematosus and and the 7th Asian Congress on Autoimmunity held in Melbourne, Australia (March, 2017). The challenge came from speaking about an intensely personal topic, from an entirely different perspective, with that of a patient, and my experience with autoimmune disease. I was diagnosed first with undifferentiated connective tissue disease in 2010 during the first year of my doctoral studies, and subsequently with systemic lupus erythematosus (SLE). This unique conference opportunity facilitated patient connection with cutting edge research across the entire scientific programme, and enabled a dialogue between those experiencing SLE with leading clinicians and researchers. The inclusion of patients in medical conferences such as this experience reflects growing evidence of the benefits afforded to clinicians, researchers and patients by highlighting patient priorities and needs, facilitating patient–research collaboration and the development of new ideas, and engagement of patients in the translation and dissemination of research findings.1

Original languageEnglish
Pages (from-to)694-695
Number of pages2
JournalLupus
Volume27
Issue number4
DOIs
Publication statusPublished - Apr 2018
Externally publishedYes

Keywords

  • Letter
  • Correspondence
  • Lupus
  • Patient partnership
  • erythematosus

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