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How to refer to people with disease in research outputs: The disconnection between academic practise and that preferred by people with multiple sclerosis
- Source :
- Multiple Sclerosis and Related Disorders. 10:127-133
- Publication Year :
- 2016
- Publisher :
- Elsevier BV, 2016.
-
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. Conclusion 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.
- Subjects :
- 0301 basic medicine
medicine.medical_specialty
Multiple Sclerosis
media_common.quotation_subject
Alternative medicine
Writing style
03 medical and health sciences
0302 clinical medicine
Surveys and Questionnaires
Terminology as Topic
Reading (process)
medicine
Humans
Social media
Registries
Public engagement
Psychiatry
media_common
Publishing
Government
Research
Patient Preference
General Medicine
United Kingdom
030104 developmental biology
Neurology
Family medicine
North America
Neurology (clinical)
Disconnection
Psychology
Social Media
030217 neurology & neurosurgery
Primary research
Subjects
Details
- ISSN :
- 22110348
- Volume :
- 10
- Database :
- OpenAIRE
- Journal :
- Multiple Sclerosis and Related Disorders
- Accession number :
- edsair.doi.dedup.....ce4d9643f2d0b4cccd18bfdac9045e0d