Thursday, 20 October 2016

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



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Multiple Sclerosis and Related Disorders. DOI: 10.1016/j.msard.2016.09.007

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

David Bakera;  Ananthi Anandhakrishnana; Katie A. Tuite-Daltonb;  Hazel Lockart –Jonesb;  Rodden M. Middletonb;  David V. FordbChristina Crowec;  Gavin Giovannonia

Neuroimmunology Unit, Blizard Institute, Barts and the London, Queen Mary University of London
bCollege of Medicine, Swansea University, Swansea, Wales, United Kingdom
cNorth American Research Committee on Multiple Sclerosis (NARCOMS),  The University of Alabama at Birmingham, Birmingham, Alabama, USA

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 pre-clinical 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.

1. INTRODUCTION
Multiple sclerosis (MS) is an immune-mediated, demyelinating and neurodegenerative disease of the central nervous system that affects about 2.5 million people worldwide (Compston & Coles 2008). The disease is insufficiently controlled by currently available treatments and therefore people utilize the internet to investigate research and treatments options (Brigo et al. 2014). There is a an increasing will amongst Government and Charity funders of research that there is patient and public involvement (PPI) in research and a strong aspect of public engagement in science. This includes the production of ‘open access’ research outputs, such that people paying for the research have access to the findings. This supports the development of an increasingly knowledgeable number of people with MS, who are reading original academic articles as they try to understand their disease and treatment options. Furthermore, members of the public are involved in review panels for ethics and research grant applications, all of which require a lay summary as part of the funding process.

To find a neutral term that best describes someone with MS, is empowering for people living with the disease, is non-patronizing and does not entrench stereotypes, we performed some surveys centred on web-based questionnaires (n=396) in which MSer was identified (Baker et al. 2014a). In our initial studies, people with MS (pwMS) did not like being called client, which is a ‘politically-correct’ term used by health economists, but also preferred not to be called a patient or an MS sufferer. In contrast pwMS received a good deal of support. The original surveys were from people visiting a United Kingdom (UK)–based, MS research blog (www.ms-res.org) and ShiftMS (www.shift.ms), which is a social media community for young people affected by MS. These sites used the term ‘MSer’, originating from the founders of ShiftMS, and therefore may have influenced the preferences of people taking the surveys. Therefore to examine this is further, different groups of people with MS were surveyed and the results were compared to that used by the academic community.

2. METHODS

2.1 Multiple Sclerosis Society Research Network Survey
In consulting with the Queen Mary University of London Research Ethics Committee no personal identifiers were collected as part of this and previous surveys (Baker et al. 2014a). By completing the surveys, participants provided implied consent for publication of results, as indicated by disclaimers. A web link to an anonymous survey was sent, via the Multiple Sclerosis Society in the United Kingdom, to members (n=315) of the MS Society Research Network (MSSRN). This is a PPI network of people personally affected by MS, who are involved in priority setting, reviewing grant applications, governance of the research programme, advisory groups and other ad hoc PPI activities. (www.mssociety.org.uk/ms-research/get-involved-in-research/research-network). People in the MSSRN survey were asked how someone with MS should be referred to with 5 set options (Client; MSer; Sufferer; Patient; PwMS that were selected previously (Baker et al. 2014a)), and asked to rank these on a 1–5 scale, from most preferred to least preferred.

2.2 UK MS Register
The UK MS Register (MSR) received peer review via MS Society mechanisms and has ethical approval from the South West–Central Bristol Research Ethics Committee (11/SW/0160) as a research database (Ford et al. 2012). Although identifiable information was collected via the MS register, this was only used to create data linkages such that the functioning UK MS Register contains only anonymous data accessed and analysed within a Safe Haven environment, with scrutiny of research outputs before release (Ford et al. 2012; Jones et al. 2014). The survey was performed, hosted and analysed by the UK MS register.

2.3 North American Research Committee on Multiple Sclerosis  registry
North American Research Committee on Multiple Sclerosis (NARCOMS) registry (www.narcoms.org; Kister et al. 2013) following ethical review by the University of Alabama at Birmingham (UAB) Institutional Review Board, sent the link to the original survey circulated to the MSSRN, to the NARCOMS registry.

2.4 Academic use of descriptors of pwMS.   As part of a previous study [Baker et al. 2014b], 161 primary research papers concerned with experimental autoimmune encephalomyelitis studies, which were published over a six-month period in 2012 had been downloaded [Baker et al. 2014b]. These were analysed for which descriptors were used. In addition the total publication outputs of some MS specialist clinical journals for the same year were analysed. We searched papers in: Multiple Sclerosis and Related Disorders (n=42), Multiple Sclerosis Journal (n=220) and Multiple Sclerosis International (n=23). These were read to determine which descriptors were used.

3. RESULTS
3.1 The preferential descriptor for someone with multiple sclerosis-The patient perspective
Following surveying the research network of the Multiple Sclerosis Society there were n=146 responses. The vast majority of people (about 70% of preferred responses in MSSRN) preferred the use of pwMS, while client was the least preferred (about 2–3% of the preferred responses) (Table 1; Figure 1). Although MSer was the second choice by the MSSRN for use in social media (Table 1), it was clear this was either a most-liked or disliked term, as also found in a sub-study (n=173) of the original surveys (Baker et al. 2014a) undertaken (Figure 1). In the survey of the MSSRN about 49% of responses selected MSer as a first or second (Preferred) choice, compared to 95% pf responses for pwMS, which was universally preferred, and 11% of the responses for client, which was the least preferred (Figure 1). Similarly 34% of responses that selected MSer were the last and second from last choices (Disliked) compared to 1% for pwMS or 70% for client (Figure 1). Patient was neither really liked (25% of response for patient) or disliked (36% of responses for patient) and most responses (39%) centred on the median preference. However, for use in scientific papers about 48% of the two most-preferred choices liked the use of patient compared to about 18% who disliked the use of patient. Again 96% of the top two responses preferred the use of pwMS and 0% of the two least-preferred responses disliked the use of pwMS. Thus, there were similarities in the overall types of responses in this new survey compared to one of the original surveys (Baker et al. 2014a), which addressed the same questions (Figure 1), although it was clear that pwMS was the preferred choice.

Table1  Descriptors most preferred by People with MS to describe someone with MS


               Most preferred descriptor of someone with multiple sclerosis
Descriptor
MS Blog
    MSS Research Network
NARCOMS
 UK MS Register


Social
Academic
Social
Academic
Social
Academic
Client
2%
3%
2%
4%
3%
6%
6%
MSer
47%
18%
5%
11%
3%
17%
12%
pwMS
42%
70%
67%
76%
67%
58%
54%
Patient
10%
3%
15%
7%
23%
9%
21%
Sufferer
6%
8%
14%
2%
4%
12%
16%
Anonymous surveys were undertaken via: a MS blog site (n=174. Baker et al. 2014a); the UK MS Society Research Network (n=146); NARCOMS (n=518) and the UK MS Register (n=1731). It was requested that respondents ranked their most preferred descriptor for being referred to in either the social media or within academic media.  In the MS Blog, MSSRN and NARCOMS surveys some responses recorded equal preferences. In the MS register survey, only data from fully competed surveys with a single preference were included in the analysis (n=1582–1618).

Figure 1.  Preferred descriptors used to describe someone with MS


An anonymous survey was undertaken via (a) an MS research blog (Baker et al. 2014a) and (b) the MS Society Research Network. It was requested that respondents ranked the quality of/their most preferred descriptor for being referred to.  The data represent the frequency distribution or each preference on the research blog (n=173) or preference of how to describe someone with MS on Social media (n=111–140). 

To achieve independent replication, the survey was performed, hosted and analysed by the UK MS register. There were a total of 1713 responses to the survey over a two-week period and as per protocol, only completed responses were included in the analysis. Again there was a clear preference (54–58%) for the use of pwMS as a descriptor of someone with MS. Incomplete answers in the other surveys tended to only include 1–3 choices, often with pwMS as the most preferred, and this figure may therefore slightly underestimate the clear preference for use of pwMS. Likewise, again use of client was an infrequently preferred choice (6% of responses) (Table 1. Figure 2). MSer again had some preference for use in the social media (Table 1), but was again found to be a term that was either liked or disliked (Figure 2). Similarly, the use of MS sufferer was either disliked or liked with a trend for the term to be disliked in both social media and the academic literature (Figure 2).  Whilst MSer may lack familiarity and thus account for the wide range of preferences observed (Figure 1, Figure 2), opinion may change as indicated by a more positive view from pwMS about MSer surveyed from sites that use the descriptor (Figure 1). Again, most notably in relation to use for social media, the use of patient was neither liked nor disliked (Figure 2). However, there was a greater preference for the use of patient in scientific publications (Table1; Figure 2). Thus, the trends identified in this large survey reflect those found in the smaller UK–based surveys (Figure 1; Figure 2). 

Figure 2.  Preferred descriptors used to describe someone with MS on the UK MS Register

A survey was undertaken via the UK MS Register. It was requested that respondents ranked their most preferred descriptor for being referred to in either: Social Media or within Academic Publications. The data represent the frequency distribution or each preference from fully completed surveys that used recorded only a single preference (n=1582–1618).

The web link used by the MSSRN was also hosted by the NARCOMS registry. Again, the preferred descriptor was pwMS for use in both social and academic media (n=518; Table 2; Figure 3). Similar to surveys by the MSSRN and MSR, here the preference for use of MSer was wide ranging. Likewise, patient was also neither most liked nor disliked for use in social media, although again use of patient was considered more acceptable in scientific outputs (Table 1; Figure 3). Client again tended to be disliked, although there appeared to be a greater acceptance of this politically-correct term than in the UK-based surveys (Figure 1-3). Likewise, use of the term sufferer suggested some national differences in acceptance of descriptor terms (Figure 3). Sufferer was largely disliked in the North American NARCOMS survey compared to the British MSR survey (Figure 3).  As such, 33.6% of MSR respondents “liked” or “most preferred” the use of sufferer, compared to only 14% of people in North America (P<0.001 Chi-squared Test). The underlying reasons behind this difference require further investigation, however the United Kingdom has poor access to disease modifying treatments (Kobelt & Kasteng 2009) and thus may be more likely to feel that they are suffering. Nevertheless in conclusion, it is clear that pwMS is the universally preferred descriptor of someone with MS for both social media and academic research outputs.

Figure 3.  Preferred descriptors used to describe someone with MS on the NARCOMS registry

An anonymous survey was undertaken via the NARCOMS registry website (www.narcoms.org). It was requested that respondents ranked their most preferred descriptor for being referred to in either: Social Media or within Academic Publications. The data represent the frequency distribution of each preference (n=454–509).

3.2 The preferential descriptor for someone with multiple sclerosis-Academic use
In an attempt to determine what descriptors MS researchers use (Table 2), we analysed primary research papers concerned with experimental autoimmune encephalomyelitis (EAE) studies (n=161), published over 6 months [Baker et al. 2014b]. We also analysed the total publication outputs of some MS specialist clinical journals for the same year. In these journals we found that 114 pre-clinical, basic science papers about EAE described someone with MS. In the vast majority (98%) of cases, patient was used to describe someone with MS. Additional descriptors were used and MS sufferer or someone suffering from MS was used in 8% of papers describing pre-clinical studies (Table 2). However, this term did not appear in the papers in clinical journals examined (Table 1). Basic scientists sometimes also use MS sufferer, in their grant applications (unpublished observations). However, it is clear that academics largely use patient, as this occurred in 98-99% of published papers (although about a quarter of papers published in clinically-oriented journals used pwMS (Table 2)).  Therefore there is a disconnection between that used by MS researchers and that preferred by pwMS.

Table2  Descriptors used to describe someone with MS in academic papers


  Frequency of descriptor of someone with multiple sclerosis in academic papers
Descriptor
Basic Science Papers
Clinical MS Special Journals
Client
0%
0%
MSer
0%
0%
pwMS
1%
24%
Patient
98%
99%
Sufferer
8%
0%
Published papers on pre-clinical studies using animal models of MS (n=114) and papers published in clinically-related, MS-specialist journals (n=285) were read and frequency of the descriptor, which may have contained multiple descriptors within one study, used to describe of someone with MS was recorded. 

4. DISCUSSION
There is clearly a disconnection between pwMS-preference and that used by academia, suggesting that change is needed. As lay pwMS are commonly reading and appraising research grants as part of the PPI process, academics should consider the sensitivities of how best to refer to someone with MS.  Simple consideration to these issues should be made during grant and paper-writing, as they are simple to implement. Although sufferer, which is more common in the tabloid media, was not commonly used in the medical journals, patient has its origins in Latin from the verb pati, to suffer, and through the participle form patientem, for one who is suffering. Patient is currently defined as a person who is under medical care or treatment and thus still carries a perhaps an out-dated paternalistic aura. This may need change as modern medicine evolves and decision-making is becoming a shared experience between the patient and caregiver. The medical profession has a history of being adaptive to change in relation to the description of people in their care; for example, the historical, medical use of: moron (Intelligence Quotient (IQ) <25), imbecile (IQ25-50) and idiot (IQ 50-70) as a measure of mild, moderate and profound mental retardation has ceased, as their use is considered politically incorrect and offensive by society.  

Concern has been expressed that any form of label can be used as a means for division and prejudice. With the need to have descriptors, the term pwMS was the preferred method for current description. This should be used in preference to ‘patient’ and use of both MS sufferer and MS client should be avoided. Whilst this aspect has been examined here in relation to MS, it is probably unlikely that the academic use of ‘patient’ and preference for ‘person with’ to describe any other condition is not the current norm. Therefore, a simple change in writing style could and should be adopted, if we are to show that we respect the wishes of the people that we serve and wish to help.

FUNDING: This research received no specific grant from any funding agency in the public, commercial or not-for-profit sectors.

ACKNOWLEDGEMENTS: The authors thank the assistance of the Multiple Sclerosis Society, notably Ms. Mital Patel. The MS Register gratefully acknowledges the support of the Multiple Sclerosis Society. NARCOMS acknowledges support from the Consortium of Multiple Sclerosis Centers, the National Multiple Sclerosis Society and unrestricted grants from pharmaceutical companies.

CONFLICTS OF INTEREST: None relevant

REFERENCES

Baker D, Pepper G, Yauner F, Giovannoni G. MSer - A new, neutral descriptor for someone with multiple sclerosis. Mult Scler Relat Disord. 2014a; 3:31-33..


Brigo F, Lochner P, Tezzon F, Nardone R. Web search behavior for multiple sclerosis: An infodemiological study. Mult Scler Relat Disord. 2014; 3:440-443.

Compston A, Coles A. Multiple sclerosis. Lancet. 2008; 372:1502-1517.

Ford DV, Jones KH, Middleton RM, Lockhart-Jones H, Maramba ID, Noble GJ, Osborne LA, Lyons RA. The feasibility of collecting information from people with Multiple Sclerosis for the UK MS Register via a web portal: characterising a cohort of people with MS. BMC Med Inform Decis Mak. 2012; 12:73.

Jones KH, Jones PA, Middleton RM, Ford DV, Tuite-Dalton K, Lockhart-Jones H, Peng J, Lyons RA, John A, Noble JG. Physical disability, anxiety and depression in people with MS: an internet-based survey via the UKMS Register. PLoS One. 2014; 9:e104604.

Kister I, Bacon TE, Chamot E, Salter AR, Cutter GR, Kalina JT, Herbert J.  Natural history of multiple sclerosis symptoms. Int J MS Care. 2013; 15: 146-158.

Koberlt G, Kasteng F. Access to innovative treatments in multiple sclerosis in Europe. 2009, pg3:1-3:20 European Federations of Pharmaceutical Industry Associations.


6 comments:

  1. MSer...horrible term...what's next AlSer..appalling...whew how can people be so clueless.

    ReplyDelete
    Replies
    1. What is AIS? (Automatic Identification System?)

      Delete
  2. The problem is we need to describe...can we ever get it right?

    ReplyDelete
    Replies
    1. I lover Marmite and I am not impartial to being called an MSer; better than called a person with x. I might as well be called a person with HIV, but I would prefer being called an HIVer.

      Delete
    2. What ever we do it will not be right for some, but if the majority rules, what do you do?

      Delete

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