How to refer to people with disease in research outputs: The disconnection between academic practise and that preferred by people with multiple sclerosis

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• 作者：David Baker^a ; ^{david.baker@qmul.ac.uk} ; Ananthi Anandhakrishnan^a ; Katie A. Tuite-Dalton^b ; Hazel Lockart&ndash ; Jones^b ; Rodden M. Middleton^b ; David V. Ford^b ; Christina Crowe^c ; Gavin Giovannoni^a
• 关键词：IQ ; Intelligence Quotient ; MS ; Multiple Sclerosis ; MSR ; MS Register ; MSSRN ; MS Society Research Network ; NARCOMS ; North American Research Committee on Multiple Sclerosis ; PPI ; Patient and public involvement ; PwMS ; Person/people with MS
• 刊名：Multiple Sclerosis and Related Disorders
• 出版年：2016
• 出版时间：November 2016
• 年：2016
• 卷：10
• 期：Complete
• 页码：127-133
• 全文大小：778 K
• 卷排序：10

文摘

Someone who has MS prefers to be described as a “person with MS”. People with MS do not want to be referred to as a “sufferer” or “client”. Researchers largely used the term “Patient”, which is not particularly liked by people with MS. A simple change to practises of use of descriptors of MS may help the Patient and Public Involvement (PPI) process.