title: How to refer to people with disease in research outputs: The disconnection between academic practise and that preferred by people with multiple sclerosis.
abstract: BACKGROUND
  Increasingly, Government and Charity funders require public engagement in research. Invariably these research outputs describe the condition of someone with the disease of interest. We therefore sought to identify the preferred descriptor of someone with a disease, such as multiple sclerosis (MS) and to determine what descriptors are currently used by academics.
  
  
  METHODS
  Several surveys were undertaken: one from the Research Network of the MS Society (MSSRN), a major MS Charity within the United Kingdom, who are involved in reviewing grant applications, priority setting and research governance (n=146), and surveys from both the United Kingdom MS register (MSR; n=1713) and the North American Research Committee on Multiple Sclerosis (NARCOMS) registry (n=518). People were asked to rate descriptors of someone affected with MS. These were compared to that used by academic experimenters in basic science and clinical science research papers.
  
  
  RESULTS
  Although the frequency of responses varied between surveys the overall findings showed many consistencies. This included use of person/people with MS (pwMS) as the preferred descriptor for someone with MS for social media and scientific publications. This was the preferred choice in about 55-60% people from the MRS and in over 70% in the NARCOMS and the MSSRN, respectively. Although MSer was the second preferred-choice for use in social media, there was as a large range of preferences from the 'most-preferred' to the 'most-disliked.' This reflected an earlier survey by UK-based research blogs using the term MSer (n=173). In contrast, pwMS had few 'dislikes' and results were skewed towards the 'liked' and 'most-preferred' choices. Client and sufferer were generally disliked terms, although there was some regional variation in levels of choice. Patient was generally seen as a neutral term that was neither strongly liked nor disliked. However, patient gained more public support for use within scientific publications (~20-25%) compared to social media (~10-15%). This descriptor was however most commonly used (98-99%) within both pre-clinical (searched in 6-month output of preclinical autoimmune MS models; n=161) and in clinical publications (specialist MS journals; n=220), whereas pwMS was not reported in over 75% of papers published in some specialised MS journals, and did not appear in the pre-clinical animal studies examined.
  
  
  CONCLUSIONS
  There is a clear disconnection between preferences by individuals living with MS and current academic practise. As pwMS are increasingly reading primary research publications and are involved in patient and public involvement in research and grant review activities, the sensitivities of lay readers should be considered when writing research outputs. This issue may affect other diseases and a change in writing style could be adopted to show that we respect the wishes of the people that we study and wish to help.
authors.affiliation: Neuroimmunology Unit, Blizard Institute, Barts and the London, Queen Mary University of London, UK. Electronic address: david.baker@qmul.ac.uk.
authors.forename: David
authors.initials: D
authors.lastname: Baker
authors.affiliation: Neuroimmunology Unit, Blizard Institute, Barts and the London, Queen Mary University of London, UK.
authors.forename: Ananthi
authors.initials: A
authors.lastname: Anandhakrishnan
authors.affiliation: College of Medicine, Swansea University, Swansea, Wales, UK.
authors.forename: Katie A
authors.initials: KA
authors.lastname: Tuite-Dalton
authors.affiliation: College of Medicine, Swansea University, Swansea, Wales, UK.
authors.forename: Hazel
authors.initials: H
authors.lastname: Lockart-Jones
authors.affiliation: College of Medicine, Swansea University, Swansea, Wales, UK.
authors.forename: Rodden M
authors.initials: RM
authors.lastname: Middleton
authors.affiliation: College of Medicine, Swansea University, Swansea, Wales, UK.
authors.forename: David V
authors.initials: DV
authors.lastname: Ford
authors.affiliation: North American Research Committee on Multiple Sclerosis (NARCOMS), The University of Alabama at Birmingham, Birmingham, AL, USA.
authors.forename: Christina
authors.initials: C
authors.lastname: Crowe
authors.affiliation: Neuroimmunology Unit, Blizard Institute, Barts and the London, Queen Mary University of London, UK.
authors.forename: Gavin
authors.initials: G
authors.lastname: Giovannoni
mesh_terms: D006801:Humans; D009103:Multiple Sclerosis / Q000523:psychology*; D009656:North America; D057240:Patient Preference / Q000523:psychology*; D011643:Publishing; D012042:Registries; D012106:Research; D061108:Social Media; D011795:Surveys and Questionnaires; D009626:Terminology as Topic; D006113:United Kingdom
keywords: Multiple sclerosis; Patient public Involvement; Public engagement; Social media; Surveys