A consensus statement on how to conduct inclusive health
research
T. K. Frankena,
1
J. Naaldenberg,
1
M. Cardol,
2
E. Garcia Iriarte,
3
T. Buchner,
4
K. Brooker,
5
P. Embregts,
6
E. Joosa,
7
F. Crowther,
8
A. Fudge Schormans,
9
A. Schippers,
10
J. Walmsley,
11
P. O’Brien,
12
C. Linehan,
13,14
R. Northway,
15
H. van Schrojenstein Lantman-de Valk
1
& G. Leusink
1
1 Radboud University Medical Center, Department of Primary and Community Care, Nijmegen, Gelderland, The Netherlands
2 Hogeschool Rotterdam, Chair Disability Studies: Diversity in Participation, Rotterdam, The Netherlands
3 Trinity College Dublin, School of Social Work and Social Policy, Ireland
4 queraum.kultur- und sozialforschung, Vienna, Austria
5 University of Queensland, Queensland Centre for Intellectual and Developmental Disability, Brisbane, Queensland, Australia
6 Tilburg University, Department Tranzo, Tilburg, Noord-Brabant, The Netherlands
7 Inclusive Creative Education and Independent Research Consultancy, Arts of the Earth Learning Hub, Singapore
8 Flinders University, Disability and Community Inclusion Unit, Adelaide, Australia
9 McMaster University, School of Social Work, Hamilton, Canada
10 VU University Medical Centre Amsterdam, Disability Studies in Nederland, Amsterdam, The Netherlands
11 Jan Walmsley Associates, UK
12 University of Sydney, Centre for Disability Studies, Sydney, Australia
13 University College Dublin, Centre for Disability Studies, Dublin, Ireland
14 University of Kent, Tizard Centre, Canterbury, UK
15 University of South Wales, School of Care Sciences, UK
Abstract
Background The active involvement of people with
intellectual disabilities in research, or inclusive
research, is relatively common. However, inclusive
health research is less common, even though it is
expected to lead to appropriate healthcare and
increased quality of life. Inclusive health research can
build upon lessons learned from inclusive research.
Method A total of 17 experts on inclusive (health)
research without intellectual disabilities and 40
experts with intellectual disabilities collaborated in
this consensus statement. The consensus statement
was developed in three consecutive rounds: (1)an
initial feedback round; (2) a roundtable discussion at
the 2016 International Association for the Scientific
Study of Intellectual and Developmental Disabilities
World Congress; and (3)afinal feedback round.
Results This consensus statement provides
researchers with guidelines, agreed upon by experts in
the field, regarding attributes, potential outcomes,
reporting and publishing, and future research
directions, for designing and conducting inclusive
health research.
Conclusions Consensus was reached on how to
design and conduct inclusive health research.
1
Correspondence: Ms Tessa Kim Frankena , Radboud University
Medical Center, Intellectual Disabilities and Health, PO Box 9101,
Nijmegen, Gelderland 6500 HB, The Netherlands (e-mail: tessa.
frankena@radboudumc.nl).
Journal of Intellectual Disability Research doi: 10.1111/jir.12486
VOLUME 63 PART 1 pp 1–11 JANUARY 2019
© 2018 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
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However, this statement should be continuously
adapted to incorporate recent knowledge. The focus
of this consensus statement is largely on inclusive
health research, but the principles can also be applied
to other areas.
Keywords inclusive research, intellectual
disabilities, health research, participation, user
involvement
Introduction
When taking on a new or complex research
methodology, most researchers seek expert guidance.
A consensus statement is commonly developed by an
independent expert panel on a particular issue in
order to provide guidance to professionals in the field
when they are dealing with this topic (Mosby’s
Medical Dictionary, 2009). An example of such a
complex methodology is inclusive research (Bigby
et al., 2014), which is defined as ‘research which
includes or involves people with intellectual
disabilities as more than just objects of research’
(Walmsley and Johnson, 2003,p.61). Inclusive
research has developed over the past three decades
and is expected to lead to a better match between
research and practice (Walmsley and Johnson, 2003;
Elberse, 2012). As a consequence of recent
developments in healthcare, patients are now often
viewed as partners rather than service users (Vayena,
2014). There is an emphasis on the rights of
individuals to make decisions about their lives
(Riddell and Watson, 2003) and, by extension, in
research. Consequently, health researchers
increasingly involve the patient’s perspective in their
study design (Richards et al., 2013). This consensus
statement adopts a broad definition of health
research which includes all research that addresses
‘the coverage, quality, efficiency and equity of health
systems’ (Alliance for Health Policy and Systems
Research, 2007,p.2). Unfortunately, people with
intellectual disabilities are not structurally involved in
health research yet, even though their involvement is
expected to lead to appropriate healthcare and
increased quality of life (Frankena et al., 2016).
These added values of inclusive health research are
needed, as people with intellectual disabilities
experience more health issues (Van Schrojenstein
Lantman-de Valk and Walsh, 2008) and barriers
when accessing health services compared to the
general population (Walmsley, 2004). Therefore, this
consensus statement specifically addresses the
involvement of people with intellectual disabilities in
health research, also known as inclusive health
research.
Inclusive health research can build on the
knowledge base of inclusive research in general. For
example, there is grey literature such as a document
titled I’m a researcher – Let me in! by The Learning
Difficulties Research Team (2006), which provides
lessons from 12 inclusive projects within Valuing
People in the form of an easy read report. However,
currently there are many ambiguities in inclusive
research. Although Walmsley and Johnson’s
definition of inclusive research is widely used, its
umbrella-like character leaves room for individual
interpretation (Bigby et al., 2014). This leads to
different approaches to people with intellectual
disabilities’ involvement, possibly leading to less
meaningful, tokenistic inclusive research (Grant and
Ramcharan, 2007). Additionally, experiences with
people with intellectual disabilities’ involvement in
research are scarcely documented, and therefore
there is little insight into inclusive processes
(Kramer et al., 2011; Flood et al., 2013). This
consensus statement aims to build on existing
knowledge on inclusive research, provide support to
researchers when they are designing and conducting
inclusive health research, and increase the
transparency of the inclusive health research
process.
This consensus statement specifically addresses
four topics of inclusive health research based on
scientific knowledge and expert experience: (1)
attributes; (2) potential outcomes; (3) reporting and
publishing; and (4) future research directions. Firstly,
attributes of inclusive health research should provide
researchers, both with and without intellectual
disabilities, with detailed information on important
considerations when designing and conducting the
study. Secondly, the outcomes of inclusive health
research may vary between different stakeholders. For
example, for health researchers, an inclusive approach
might influence their quality of work. For people with
intellectual disabilities, inclusion in health research
could have more personal outcomes such as improved
quality of life. Awareness of and insight into
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T. K. Frankena et al. • Consensus statement on inclusive health research
© 2018 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
differences between stakeholder groups is needed to
generate sufficient support for inclusive health
research (Frankena et al., 2016). Thirdly, guidelines
on what to report when publishing inclusive health
research would aid the transparency and
understanding of inclusive health research
methodologies. Finally, as with any consensus
statement, this paper also addresses future research
directions identified by experts; this should contribute
to taking the next steps in inclusive health research
(Mosby’s Medical Dictionary, 2009). The aim of this
consensus statement is to provide researchers with
guidelines, agreed upon by experts in the field,
regarding attributes, potential outcomes, reporting
and publishing, and future research directions, when
they are designing and conducting inclusive health
research.
Consensus development
This consensus statement was developed in
collaboration with the International Association for
the Scientific Study of Intellectual and
Developmental Disabilities’ (IASSIDD) Health
Special Interest Research Group (SIRG) and experts
with and without intellectual disabilities on inclusive
(health) research.
Participants in the consensus statement
Eighteen experts without intellectual disabilities were
invited if they (1) had an accepted abstract on
inclusive (health) research for the 2016 IASSIDD
World Congress (IASSIDD, 2016) and/or (2) had
peer-reviewed publications in the field. These experts
were asked to identify experts with intellectual
disabilities with whom they could collaborate on the
consensus statement in order to gain their
perspective. No criteria were attached to the inclusion
of experts with intellectual disabilities. However, most
of these experts were experienced co-researchers and
had reading and writing abilities. Experts were mostly
associated with university-based health research
departments and had expertise in inclusive research.
Experts without intellectual disabilities were invited
to co-author the consensus statement, and experts
with intellectual disabilities were invited to co-author
an easy-read version of the statement. At the
conclusion of this consultation, a total 17 experts
without, and 40 experts with, intellectual disabilities
collaborated in this consensus statement. Experts
with and without intellectual disabilities are referred
to as ‘experts’ in the rest of this paper if not specified
otherwise.
Inclusive health research topics
As stated in the introduction, this consensus
statement specifically addresses four topics of
inclusive health research based on scientific
knowledge and expert experience. Previous to this
consensus statement, a structured literature review
(Frankena et al., 2015), a Delphi study (Frankena
et al., 2016) and an international multiple case
study (Frankena et al., submitted) on inclusive
health research were conducted. Outcomes from
these studies and the knowledge of experts were
combined in this consensus statement, leading to
the topics: (1) attributes; (2) potential outcomes;
(3) reporting and publishing; and (4) future
research directions. These topics were the outline
of the process leading to the final consensus
statement.
Consensus statement process
This consensus statement was developed in three
consecutive rounds. Table 1 provides an overview of
the steps taken during the consensus development
and the number of experts participating in each
round. All communication during this process was
conducted in the English language. Experts without
intellectual disabilities often functioned as translators
for the experts with intellectual disabilities; this was
also the case for English speaking experts with
intellectual disabilities. Several means were used to
make the process inclusive for experts with
intellectual disabilities, for example: an easy-read
report was developed; a Skype meeting was
organised to provide feedback; written feedback was
provided, which in one case included photos from
flip-overs used during discussion on the easy-read
statement.
Firstly, an outline of the consensus statement was
developed by the lead researchers on this project with
(A.C., H.J.) and without (T.F., J.N., H.L.)
intellectual disabilities (see Section 0.0), after which it
was distributed among experts to obtain their
feedback. During the first round, experts received the
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T. K. Frankena et al. • Consensus statement on inclusive health research
© 2018 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
outline and provided feedback. The experts all
confirmed the need to include four topics as
described in the outline and provided extensive input
of their content.
Secondly, experts and additional Congress
attendees participated in a roundtable discussion
during the 2016 IASSIDD World Congress. In this
discussion, the topics ‘attributes’, ‘potential
outcomes’ and ‘future research directions’ were
presented and discussed in small brainstorming
sessions using flipcharts. Time constraints
precluded discussion of the topic ‘reporting and
publishing’. Roundtable participants agreed on the
relevance of the developed outline, and additional
content was added.
Finally, based on the roundtable discussion, a
second draft of the consensus statement and an
easy-read version were again circulated among the
experts. The final round aimed to jointly develop a
statement with consensus from all experts involved.
An easy-read version was compiled by the lead
researchers on this project with (A.C., H.J.) and
without (T.F.) intellectual disabilities. These experts
with intellectual disabilities specifically provided
feedback on the easy-read version of the statement
using their experience in research. Feedback
provided by the experts during these three rounds
was carefully compared, processed and implemented
by the lead researchers. Remaining questions were
asked in subsequent rounds. On the basis of the
final feedback round, the lead authors of this paper
then prepared the final version of the consensus
statement, including the easy-read version, with
additional references. The experts signified general
agreement with the entire document and gave
permission for co-authorship.
Findings that form the consensus statement
This consensus statement addresses (1) attributes;
(2) potential outcomes; (3) reporting and
publishing; and (4) future research directions of
inclusive health research. Topics 1 and 3, attributes
and reporting and publishing, give researchers
practical guidance when they are designing,
conducting and publishing inclusive health research.
The potential outcomes provide insight into benefits
of inclusive health research and advocate for
inclusive health research. Future research directions
provide insight into the research agenda with regard
to this topic, originating from inclusive health
research practice. Each topic is presented in a
separate section. This consensus statement
addresses one particular inclusive approach: a team
of university researchers collaborating with
individuals with intellectual disabilities. However,
some aspects may be relevant to other inclusive
research approaches, such as researchers with
intellectual disabilities looking to collaborate with
university researchers or a university researcher
looking to collaborate with an established group of
researchers with intellectual disabilities; this focus
should be noted here. Parallel to the development of
this consensus statement, an easy-read version of
4
Table 1 Consensus development
Time Action Participants
June 2016 Invitation to experts and development of the outline
of the consensus statement
18 experts and their colleagues with
intellectual disabilities
July 2016 Round I: feedback on outline of the consensus statement 16 experts without intellectual disabilities
August 2016 Round II: roundtable discussion during 2016 IASSIDD
World Congress on first draft of the consensus statement
and topics ‘attributes’, ‘potential outcomes’ and ‘future
research directions’
11 experts and 11 additional conference
attendees
September 2016 Round III: feedback on second draft of the consensus
statement and the easy-read statement
16 experts without, and 40 experts with,
intellectual disabilities
January 2017 Agreement on final consensus statement and
easy-read statement
17 experts without and 40 experts with
intellectual disabilities
Journal of Intellectual Disability Research VOLUME 63 PART 1 JANUARY 2019
T. K. Frankena et al. • Consensus statement on inclusive health research
© 2018 MENCAP and International Association of the Scientific Study of Intellectual and Developmental Disabilities and
John Wiley & Sons Ltd
the statement was developed by experts with
intellectual disabilities (n = 40) to facilitate access to
the information (see Appendix SI for easy-read
statement). Whereas this consensus statement
provides the academic underpinning and agreement
among experts, the easy-read consensus statement
provides more practical support for health
researchers aiming to adopt an inclusive approach.
The decision was made to use this inclusive
approach following consultation with two experts
with intellectual disabilities.
Attributes of inclusive health research
Inclusive health research design depends on study
characteristics, research topic, research questions,
researchers (both with and without intellectual
disabilities), funding and options with in academic
structures. When inclusive health research is being
designed and conducted, eight attributes identified by
the experts in this consensus should be borne in mind
(Table 2). For each attribute, researchers are
provided with a detailed description of what inclusive
health research entails and what the research team
needs to take into consideration. However, in light of
the multitude of ways in which inclusive health
research can be conducted, not all attributes might be
necessary for every project. Attributes should,
therefore, be perceived as flexible and mouldable to
the diverse research teams and topics. As this
consensus statement addresses inclusive health
research in particular, please be aware that study
participants can be individuals with intellectual
disabilities.
An important attribute and precondition is the
inclusive research ‘ethos’, which is applicable during
the whole research process. The ethos is a certain
mindset put forward by experts in this statement. The
ethos encourages meaningful inclusion, and
discussion on this topic within the research team is
essential. Other attributes are as follows: recruiting
researchers; designing the study; facilitating the
process; dealing with practicalities; generating data;
analysing data; and using results. The attribute
‘recruiting researchers’ with intellectual disabilities
is especially important for researchers new to
inclusive health research, for whom it can be
difficult to recruit researchers with intellectual
disabilities if there is no network in place yet.
Researchers without intellectual disabilities have to
consider how to recruit a representative group of
researchers with intellectual disabilities; how to deal
with their service providers and/or support network;
how to respond to everybody’s competencies; and
how to deal with financial compensation of
researchers with intellectual disabilities. The
attribute ‘designing the study’ focuses on roles;
skills and competencies; research methodology; and
creative and alternative ways to conduct health
research inclusively. The attribute ‘facilitating the
study’ provides information on how to make the
study as inclusive as possible, by ensuring
researchers with intellectual disabilities’ meaningful
inclusion through planning, discussion and decision
making. The attribute ‘dealing with practicalities’
presents practical aspects of inclusive health
research that have to be taken into account. The
attributes ‘generating data’, ‘analysing data’ and
‘using results’ all support inclusion in data
collection, analysis and dissemination, whereby
every step is discussed with the researchers with
intellectual disabilities.
Potential outcomes of inclusive health research
When an inclusive approach is adopted, several
outcomes that relate to the inclusive process can
be expected (Table 3). We have grouped these
outcomes into five levels that can support the
research team when they are setting goals for their
project and evaluating these goals afterwards. The
five levels are personal, professional, research,
healthcare and societal, where the personal level
affects a few, and the societal level affects many
people. At the personal and professional levels,
outcomes affect researchers both with and
without intellectual disabilities. The potential
outcomes support the call for inclusive health
research and help advocate for such an approach.
Generally, inclusive research is said to empower
people with intellectual disabilities and increase the
relevance of study results. In this consensus
statement, we would like to draw attention to a
myriad of other outcomes. In particular, the
outcomes for research signify the potential of
inclusive health research for, for example,
contributing to appropriate data collection, quality of
data and relevance of research outcomes.
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