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

H


©2016.
This manuscript version is made available under the CC-BY-NC-ND 4.0 license
http://creativecommons.org/licenses/by-nc-nd/4.0/

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



Click for Paper
How do you describe someone you study.
Please Retweet. May help you get a grant 
http://authors.elsevier.com/a/1TvWc7skoepyg9
Paper available until 8 December 2016


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. Fordb
Christina 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.


About the author

MouseDoctor

6 comments

By MouseDoctor

Translate

Categories

Recent Posts

Recent Comments

Archives