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Broadening the diversity of consumers engaged in guidelines: a scoping review

Authors:
  • La Trobe University and Monash University, Melbourne, Australia
Article

Broadening the diversity of consumers engaged in guidelines: a scoping review

Abstract

Background Guideline developers are encouraged to engage patients, carers and their representatives (‘consumers’) from diverse backgrounds in guideline development to produce more widely applicable guidelines. However, consumers from diverse backgrounds are infrequently included in guidelines and there is scant research to support guideline developers to do this. Objectives To identify principles and approaches to broaden the diversity of consumers engaged in guideline development. Design Scoping review and semi-structured interviews. Methods We conducted comprehensive searches to March 2020 for studies, reports and guidance documents. Inclusion criteria included the terms ‘consumer’ (patients, carers and their representatives), ‘diversity’ (defined using the PROGRESS-PLUS mnemonic) and ‘consumer engagement’ (the active involvement of consumers at any stage of guideline development). We also conducted four interviews with consumers and guideline developers. We used descriptive synthesis to identify themes, and summarised information about implemented approaches used to broaden diversity of consumers in guidelines. Results From 10 included documents, we identified eight themes. Themes covered general engagement concepts (Respectful partnerships; Recruitment; Expectations, process and review); specific concepts about guideline development group (GDG) engagement (Characteristics of guideline personnel; Consumers’ role, characteristics and prominence; Preparing and supporting consumers); and other (non-GDG) approaches (Online methods; Consultations and research-based approaches). The most commonly included PROGRESS-PLUS categories were Disability, Race/culture/ethnicity/language, Place of residence and Other vulnerable (eg, ‘disadvantaged groups’). Each theme included the views of both consumers and guideline developers. We found descriptions of 12 implemented engagement approaches to broaden diversity of consumers in guidelines. Conclusions Relationship-building, mitigating power imbalances and meeting consumers where they are at underpin our findings. Engaging with diverse groups may require greater attention to building formal, respectful partnerships and employing inclusive engagement methods.
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SynnotA, etal. BMJ Open 2022;12:e058326. doi:10.1136/bmjopen-2021-058326
Open access
Broadening the diversity of consumers
engaged in guidelines: a scoping review
Anneliese Synnot ,1,2 Sophie Hill,1 Allison Jauré,3,4 Bronwen Merner,1 Kelvin Hill,5
Peta Bates,6 Alexandra Liacos,7 Tari Turner 2
To cite: SynnotA, HillS,
JauréA, etal. Broadening
the diversity of consumers
engaged in guidelines: a
scoping review. BMJ Open
2022;12:e058326. doi:10.1136/
bmjopen-2021-058326
Prepublication history and
additional supplemental material
for this paper are available
online. To view these les,
please visit the journal online
(http://dx.doi.org/10.1136/
bmjopen-2021-058326).
Received 13 October 2021
Accepted 22 May 2022
1Centre for Health
Communication and
Participation, School of
Psychology and Public Health,
La Trobe University, Melbourne,
Victoria, Australia
2Cochrane Australia, School of
Public Health and Preventive
Medicine, Monash University,
Melbourne, Victoria, Australia
3Sydney School of Public Health,
The University of Sydney,
Sydney, New South Wales,
Australia
4Centre for Kidney Research,
Children's Hospital at
Westmead, Westmead, New
South Wales, Australia
5Stroke Foundation, Melbourne,
Victoria, Australia
6Murdoch Children's Research
Institute, Melbourne, Victoria,
Australia
7Eastern Health, Box Hill,
Victoria, Australia
Correspondence to
Anneliese Synnot;
a. synnot@ latrobe. edu. au
Original research
© Author(s) (or their
employer(s)) 2022. Re- use
permitted under CC BY- NC. No
commercial re- use. See rights
and permissions. Published by
BMJ.
ABSTRACT
Background Guideline developers are encouraged
to engage patients, carers and their representatives
(‘consumers’) from diverse backgrounds in guideline
development to produce more widely applicable
guidelines. However, consumers from diverse backgrounds
are infrequently included in guidelines and there is scant
research to support guideline developers to do this.
Objectives To identify principles and approaches to
broaden the diversity of consumers engaged in guideline
development.
Design Scoping review and semi- structured interviews.
Methods We conducted comprehensive searches to
March 2020 for studies, reports and guidance documents.
Inclusion criteria included the terms ‘consumer’ (patients,
carers and their representatives), ‘diversity’ (dened
using the PROGRESS- PLUS mnemonic) and ‘consumer
engagement’ (the active involvement of consumers at
any stage of guideline development). We also conducted
four interviews with consumers and guideline developers.
We used descriptive synthesis to identify themes, and
summarised information about implemented approaches
used to broaden diversity of consumers in guidelines.
Results From 10 included documents, we identied
eight themes. Themes covered general engagement
concepts (Respectful partnerships; Recruitment;
Expectations, process and review); specic concepts
about guideline development group (GDG) engagement
(Characteristics of guideline personnel; Consumers’
role, characteristics and prominence; Preparing and
supporting consumers); and other (non- GDG) approaches
(Online methods; Consultations and research- based
approaches). The most commonly included PROGRESS-
PLUS categories were Disability, Race/culture/ethnicity/
language, Place of residence and Other vulnerable (eg,
‘disadvantaged groups’). Each theme included the views
of both consumers and guideline developers. We found
descriptions of 12 implemented engagement approaches
to broaden diversity of consumers in guidelines.
Conclusions Relationship- building, mitigating power
imbalances and meeting consumers where they are at
underpin our ndings. Engaging with diverse groups may
require greater attention to building formal, respectful
partnerships and employing inclusive engagement
methods.
INTRODUCTION
Clinical practice guidelines (‘guidelines’) are
statements that include recommendations
for healthcare practice used by clinicians
and patients to inform healthcare decision-
making. However, guideline recommenda-
tions are not always universally applicable
across populations and patient groups.1 2 For
example, compared with more privileged
populations, people from disadvantaged
groups may experience different baseline
risks of a particular condition, face more
barriers to access the recommended treat-
ment or hold different values about the
treatment’s effects.1 In this way, guidelines
may unintentionally result in poorer health
outcomes (or health inequities) for people
from disadvantaged groups.3 Health ineq-
uities are defined as differences in people’s
health that are unnecessary, avoidable, unfair
and unjust.4 They are derived from social
and economic factors commonly termed
PROGRESS- PLUS (Place of residence, Race/
culture/ethnicity/language, Occupation,
Gender and sex, Religion, Education, Socio-
economic status, Social capital, Age, Sexual
orientation and Disability).2 5
Guideline developers are encouraged to
address health equity in guidelines,2 6 for
example by prioritising equity- relevant ques-
tions and searching for evidence relevant to
people from diverse backgrounds.6 7 Another
STRENGTHS AND LIMITATIONS OF THIS STUDY
Including evidence from a variety of sources (eg, re-
search studies and guidance reports) and data from
interviews with consumers and guideline develop-
ers provided considerable depth and breadth to the
ndings.
We used a highly structured data charting process
and rigorous descriptive synthesis to synthesise and
summarise the ndings.
It is likely we missed some descriptive reports about
broadening diversity of consumer engagement in
guidelines as they are sometimes published online
in manuals and reports that are difcult to nd or
they remain unpublished.
Only a single researcher conducted the descriptive
synthesis with checks by a second researcher, rath-
er than independent double coding.
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approach is to directly engage consumers from diverse
backgrounds (ie, those listed in PROGRESS- PLUS) in the
guideline development process, for example, as guideline
development group (GDG) members.6 8 The intention is
not to aim for complete representation, but to ensure
that a diversity of the lived experience of consumers,
and those they may represent, is reflected in the guide-
line. However, it would seem this happens infrequently
as there are few methodological or descriptive studies
exploring how consumers from diverse backgrounds
can be engaged in guidelines.9–11 Instead, recruiting and
engaging diverse groups is commonly described as either
a key challenge or limitation by guideline developers who
have undertaken consumer engagement activities.9 12–14
Consumer engagement in guidelines can be defined as
the active involvement of consumers in a bi- directional
relationship that results in informed decision- making at
any stage of the guideline development process (adapted
from Concannon et al).15 It may include having multiple
consumers as members of the GDG, or involve a parallel
process, for example, as participants in focus groups,
interviews and workshops.9 However, consumers from
diverse backgrounds may face additional barriers to
participation, meaning guideline developers may need to
adapt their approach and provide additional support.16 17
Despite the need for specific advice, guidance to address
equity in guidelines typically includes little practical
advice about how to do this.6 8 Guidance does exist for
engaging specific groups in guidelines, such as children
and people with mental illness or intellectual disability16
and Indigenous Australians,18 but this may not be appli-
cable across the spectrum of diversity. Further, there has
been no rigorous and comprehensive synthesis of the
relevant literature on which to develop such guidance.11
Our aim was to identify principles and approaches to
broaden the diversity of consumers engaged in guideline
development. The findings will be relevant to guideline
developers and guideline funders wanting to engage
consumers from diverse backgrounds. Broadening the
diversity of consumers engaged in guidelines may lead
to guidelines that better address health equity,8 poten-
tially supporting optimal healthcare delivery and health
outcomes for consumers from diverse backgrounds.3
METHODS
Context
This research was funded by Australia’s Stroke Foun-
dation to inform refinements to the consumer engage-
ment model used in their stroke living guideline.19 We
conducted companion scoping reviews, one described
here and one elsewhere.20
Research approach
We conducted a scoping review, supplemented by key
informant interviews with consumers and guideline devel-
opers. We selected scoping review methodology given our
broad aim and the exploratory nature of the research,
which necessitated the inclusion of evidence from a
variety of sources (eg, research studies and guidance
reports).21 Scoping reviews still adhere to core systematic
review characteristics, such as an explicit, transparent
search, inclusion criteria and data extraction process.
We also conducted interviews to augment review find-
ings22 after our initial exploratory searches identified
few documents which met the inclusion criteria. Key
informants have special, often first- hand knowledge of
a phenomenon and can provide a deeper insight into
what is occurring.23 The scoping review was commenced
first, with provisional results informing interview data
collection.
We followed relevant guidance to conduct21 and
report24 the review, but did not publish our protocol a
priori.
Inclusion criteria
Participants
We included documents that pertained to consumers
from diverse backgrounds. We defined consumers
as patients and potential patients, carers and people
who use healthcare services and their representatives,
including organisational representatives.25 We defined
people from diverse backgrounds as those who might
experience health disadvantage for reasons relating to
the PROGRESS- PLUS categories, that is, Place of resi-
dence (ie, low- income country, or living in a remote
area), Race/culture/ethnicity/language, Occupation
(eg, being unemployed or working in a high- risk envi-
ronment), Gender and sex (eg, transgender), Religion,
Education (ie, limited education), socioeconomic status
(ie, poor/limited money), Social capital (ie, social isola-
tion and having limited networks), Age, Sexual orienta-
tion and Disability.2 5 The PROGRESS- PLUS acronym is a
recommended framework used in guidelines to consider
health equity.26
Core concepts
Our core concepts were ‘consumer engagement’ and
‘ways to broaden the engagement’ of people from diverse
backgrounds in guidelines.
We defined consumer engagement as the active
involvement of consumers in a bi- directional relation-
ship that results in informed- decision making at any
stage of the guideline development process (adapted
from Concannon et al).15 We were interested in examples
of engagement where consumers had some impact on
decision- making, operationalised using the upper three
levels of the International Association of Public Participa-
tion (IAP2) Spectrum of Participation.27 These include:
Involve (work directly with consumers throughout
the process); Collaborate (partner with consumers in
each aspect of the decision) and Empower (place final
decision- making in consumers hand).27
We included documents if they described ways to support
or increase the involvement of people from diverse back-
grounds, or they described an implemented example of
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consumer engagement involving people from diverse
backgrounds. Where documents in the latter group also
included non- diverse consumers, we included them if the
majority of consumers were from diverse backgrounds, or
the data or recommendations pertaining to people from
diverse backgrounds could be differentiated.
Context
We defined guidelines as ‘statements that include recom-
mendations intended to optimise patient care that are
informed by a systematic review and an assessment of
the benefits and harms of alternative options’,28 (p.4)
although in practice we took a generous view of what
constituted a guideline.
Evidence sources
To allow a comprehensive exploration of the topic, we
included qualitative and quantitative research studies
(primary and secondary), case reports, guidance and
other reports, collectively, referred to as ‘documents’.
Search sources and strategy
Using a search strategy developed by a specialist librarian,
we searched the following databases in March 2020:
MEDLINE (1946 to 20 March 2020) and Embase (1947
to 20 March 2020; see online supplemental material 1).
We developed and ran additional searches in PsycINFO
and CINAHL but they were not subsequently used as they
yielded few additional citations and few unique citations
corresponding to a reference set of potentially included
studies that were already identified in the MEDLINE
and Embase searches. We searched the websites of inter-
national organisations and networks specialising in
guidelines or health technology assessments and those
concerned with consumer engagement in healthcare.
Examples include Guidelines- International- Network,
Health Technology Assessment International, the
National Health and Medical Research Council and the
National Centre for Health and Care Excellence, NIHR
INVOLVE and the Consumers Health Forum of Australia.
We contacted experts in the area by email and via listservs
asking if they could recommend potential documents
for inclusion. Finally, we searched the reference lists of
included documents.
We undertook a single search and screening process
for the review reported here and the companion review.20
More detail describing and justifying the terms used in
the search strategy is provided in online supplemental
material 1).
Selection process
We conducted two- person independent screening of titles
and abstracts and full- texts (AS, AL, JH) using Covidence
systematic review software.29 Records were de- duplicated
prior to uploading into Covidence. Discrepancies on title
and abstract were resolved by AS, and for full texts, by
discussion between the researchers or with input from
another researcher (TT).
Data charting items and process
To record document characteristics, one researcher (AS)
charted the following key features using a standardised
template: aim, country of origin, document type (ie, qual-
itative research, guidance document), research methods
used (or other basis of their findings/recommendations),
consumer type (ie, carer), PROGRESS- PLUS category
and the views presented in the document (consumers or
guideline developers). We added an ‘other vulnerable’
PROGRESS- PLUS category to capture groups that did
not fit into existing categories, such as young people who
had grown up in care.
To chart information relating to principles and
approaches to increase diversity, we copied relevant text
from any section of the included documents into a single
Word document.
To chart information relating to implemented exam-
ples of diverse consumer engagement, we devised a
chart template based on relevant standards and frame-
works30 31 to capture the number of consumers, guide-
line stages, key engagement features such as engagement
methods, and the tasks given to consumers. We sourced
some of this detail from relevant additional references,
if provided.
One researcher (AS) conducted the data charting, with
queries discussed and resolved with a second researcher
(TT).
Interviews
We included English- speaking adults who identified as
either a consumer from a diverse background(s) who
had contributed (in any capacity) to one or more stages
of guideline(s), or a guideline developer who had had
a central role in guideline(s) in which consumers from
diverse backgrounds were engaged in any stage or
capacity.
Using purposive sampling, we recruited participants
via the networks of the project team and those of inter-
national guideline groups, such as the National Institute
for Clinical Excellence and Guidelines- International-
Network. We emailed study information to individuals
and organisations requesting they forward the details to
relevant contacts, who could then get in touch with the
researcher. We intended to conduct 10 interviews but
ceased recruitment early as the data was adding some
illustrative examples to the descriptive themes but few
unique codes.
An experienced qualitative researcher (AS) conducted
60- min interviews over Zoom. Questions probed partic-
ipants’ experiences of engaging consumers/being
engaged in guidelines, whether they felt able to make an
active contribution (consumers only), what worked well,
what could have been improved and their recommenda-
tions (see online supplemental material 2). The inter-
views were audio- recorded and transcribed. Participants
were sent a copy of the results.
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Synthesis
We conducted a descriptive synthesis of relevant text and
transcripts. Descriptive synthesis, in the context of system-
atic reviews of qualitative evidence, allows the generation
of themes from textual evidence that remain ‘close’ the
primary studies (Thomas 2008)32 and has been used in
similar reviews (Tong 2018).33 A more analytical approach
was not possible given the limited data available in some
included documents. As outlined by Thomas (2008),
starting with the included documents, one researcher
(AS) undertook line- by- line coding in Microsoft Word,
applying free codes to the text. We reviewed the free
codes, seeking like concepts, then merged and refined
codes before grouping them under subthemes and then
themes.
We used these codes, subthemes and themes as a frame-
work to analyse the interview transcripts but created new
codes in the few instances where new ideas or concepts
were described. Once the document and interview data
were integrated together, we refined and finalised the
codes, subthemes and themes, and created overarching
categories. A second researcher (TT) reviewed the data
within each theme and subtheme, checking it was coded
appropriately. The categories, themes and subthemes are
presented in a table, along with the PROGRESS- PLUS
categories they pertain to, the included source, and illus-
trative quotes.
Separately, we summarised information about the
implemented approaches for boosting diversity of
consumers engaged in guidelines, in a table and text.
Patient and public involvement
Patients and the public (in this paper, ‘consumers’) were
not involved in developing or conducting this study or
disseminating its results. This decision was made because
of our tight time frames and the implications this would
have had on our ability to meaningfully engage consumers
and address their concerns. In a subsequent stage of the
broader project we sought consumer input via a focus
group to apply the review findings to the funder’s stroke
living guidelines, however this step is not reported in this
paper.
RESULTS
Selection of documents
We identified 15 611 records from database searches
and 87 records from additional sources. After de- dupli-
cation, we screened 11 090 citations on title and abstract
and subsequently reviewed 347 documents in full text.20
Of these, 337 documents were excluded from the review
(see Preferred Reporting Items for Systematic Review and
Meta- Analysis flow chart, online supplemental material 3,
for reasons), with 10 documents included in the review.
Characteristics of included documents
The 10 included documents (see table 1) comprised a
systematic review,34 a qualitative interview study,35 two
evaluation studies,36 37 one descriptive report,38 a check-
list,8 a toolkit chapter,16 two handbook modules18 39 and
a discussion paper.40 They were from Australia (n=3), the
USA (n=3), the UK (n=1), Europe (n=1) and from inter-
national groups (n=2).
The documents aimed to: provide guidance for
developers about engaging diverse groups in guide-
lines8 16 18 34 39 40; provide an account of engaging diverse
groups in a guideline36–38; and explore the views of
consumers from diverse backgrounds about engaging in
guidelines.35
Across the documents, most diversity categories were
mentioned including: Disability (intellectual, phys-
ical and mental illness; n=6), Race/ethnicity/culture/
language (culturally and linguistic diverse backgrounds
generally, and African Americans, and Aboriginal and
Torres Strait Islander peoples; n=6), Place of residence
(low- income and middle- income countries, n=3), Other
vulnerable (young people who had grown up in care;
n=3), Age (children and young people; n=2), Gender and
sex (transgender men; n=2), Education (n=1), Socioeco-
nomic status (n=1), Sexual orientation (men who have sex
with men; n=1). No documents focused on the remaining
categories (Occupation, Religion, Social Capital). Most
documents focused on one or two of the PROGRESS-
PLUS categories (n=6), while the remaining documents
(n=4) included several categories, with a broader focus,
for example on disadvantaged groups, or people facing
barriers to participation.
Most documents (n=7) included the views of consumers
from diverse backgrounds (of these, five also included
guideline developer views). Three documents solely
presented the views of guideline developers.
Interview participants
We interviewed two consumers and two guideline devel-
opers (three women and one man), based in Europe
(n=3) and Australia (n=1). Consumers self- identified as
belonging to a minority ethnic group (n=1) and being
older (n=2) and had contributed to two or three guide-
lines. Guideline developers had engaged people with
autism and people with a neglected tropical disease in
one guideline each.
Both consumers were experienced as consumer
members of a GDG. This involved semi- regular face- to-
face meetings for the duration of the guideline’s devel-
opment. For one guideline developer, the consumer
engagement approach involved face- to- face interviews
with consumers in low- resource settings. For the other,
it included a consumer member on the GDG, online
submissions about draft recommendations, an online
survey to prioritise recommendations and multiple face-
to- face workshops to review the draft guideline.
Principles and approaches to broaden diversity of consumers
engaged in guidelines
We identified eight themes grouped under one of the
three overarching categories (see table 2). Within each
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Table 1 Characteristics of included documents
Document type
(country) Aim/objective
Methods, or basis of
recommendations
Consumer group(s)
(PROGRESS- PLUS)*
Views
shared††
Checklist8
(International)
Guidance for guideline developers on how to consider
health equity at key stages of the guideline development
process
Literature review,
group discussions and
consensus building
‘Disadvantaged groups’ (with specic example: men
who have sex with men and transgender people in
LMICs) (P/S/G/OV)
GL
Toolkit chapter16
(UK)
To show how it is possible to effectively involve people
who may face additional barriers to participation
Published literature and
authors’ experiences
People facing barriers to participation (children, young
people, mental illness, substance use, cognitive
impairment, minority ethnic groups) (P/R/A/D/OV)
GL
Systematic
review34
(International)
Practical considerations for using online methods to
engage patients in guideline development
Rapid qualitative
evidence synthesis (79
studies)
Various ‘diverse’ groups and ‘specic patient
populations’‡‡ (P/R/G/E/SES/A/D/OV)
C; GL
Handbook
module18
(Australia)
Practical advice to guideline developers about how
Aboriginal and Torres Strait Islander people need to be
involved in guideline development
Literature, and guidelines
and methods experts and
consumers
Aboriginal and Torres Strait Islander people (R) C; GL
Handbook
module39
(Australia)
Outline how guideline developers can engage with and
support consumers in ways that help them make a
meaningful contribution to guideline development
Literature, and guidelines/
methods experts and
consumers
Consumers with a variety of needs (related to disability,
medical conditions, cultural, language, social) (R/D)
C; GL
Discussion
paper40
(Australia)
Assist in the implementation of culturally and
linguistically diverse consumer, carer and community
participation in the Victorian healthcare system
Literature and local health
policies
Culturally and linguistically diverse consumers (R) C
Evaluation36
(UK)
Outline the approach taken (involving people with
learning disabilities in guideline development) and
highlight lessons learnt
Reections documented
during process
People with learning disabilities (n=4) (D) C; GL
Evaluation37
(US)
Describe participant experiences with a novel online,
scalable approach for patient and caregiver engagement
in guideline development
Surveys and interviews People with Duchenne muscular dystrophy and carers
(n=95) (D/P)
C
Descriptive
report38
(Europe, n=8
countries)
Engage multiple sclerosis patients and caregivers in the
denition of the key questions to be answered in the
guideline on palliative care of people with severe multiple
sclerosis
No evaluation; informal
reections only
People with multiple sclerosis and carers (n=970) (D) GL
Qualitative
research35
(US)
Investigate potential consumer perspectives on
engagement in guidelines, including barriers and
facilitators
Focus groups African American research patient partners (n=10)(R) C
*PROGRESS- PLUS categories: Place of residence, Race/culture/ethnicity/language, Occupation, Gender and sex, Religion, Education, Socioeconomic status, Social capital, Age, Sexual
orientation, Disability, Other vulnerable.5
†Refers to whether the ndings or recommendations made in the document were those of consumers (C) or guideline developers (GL). If classied as consumer, the document directly
included consumer views via formal research, the author team included consumers, or consumers provided feedback on the document.
‡Full list: People with limited mobility or other travel limitations, age and sex, socioeconomic status, ethnicity and culture, patients living in geographically different areas, younger people,
people with less education, people living rurally with limited internet access.
A, age; C, consumer; D, disability; E, education; G, gender and sex; GL, guideline developer; LMIC, low- income and middle- income country; N, number of participants; OV, other vulnerable; P,
place of residence; R, race/culture/ethnicity/language; S, sexual orientation; SES, socioeconomic status.
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Table 2 Principles and approaches for engaging diverse groups in guideline development
Theme
(sources)
PROGRESS-
PLUS Components Illustrative quotes
Category 1: General concepts about engaging diverse groups in guidelines
1. Respectful
partnerships
(5 documents, 3
interviews)
P/R/A/D/OV Establish respectful partnerships with organisations that work with or represent
diverse groups. They can assist with recruitment,16,18, Int- C;GL offer advice,16 18 40 or
actively support16, Int- GL the engagement.
Partner with individual consumers to plan the engagement and share core
tasks,36,40,Int- GL acknowledging that they are the experts in how consumers should
be engaged.18 36 40
Establish and maintain respectful partnerships from the beginning.18,35,Int- GL
Employ an adult autistic researcher, and a caregiver researcher, as members of the
GDG so that they're on staff and involved in the day- to- day work (…). It would have
been really important.” Int- GL
“Engage key people (…) such as Elders and community leaders in the early stages
and respect their advice throughout the process.” 18
2. Recruitment
(3 documents, 2
interviews)
P/R/A/D/OV Tailor recruitment strategy to the topic and the demographics (eg, age and language)
of all diverse consumer groups sought.8,16,40,Int- C
Health and other professionals working with your target group can assist with
recruitment,16,Int- G but relying on third parties can be challenging as you cannot
follow- up with consumers directly.Int- GL
Organisations that work with or represent diverse groups can also assist, see
Respectful Partnerships theme.
“For some topics, it may be possible to recruit young people (aged 16–25) using
targeted advertising and social media.”16 (p.54)
“Professionals working in the eld can also play a role. This turned out to be a
successful route for recruiting young adults (aged under 25) for the NICE ‘looked after
children’ guideline development group.”16 (p.55)
3. Expectations,
process and
review
(7 documents, 3
interviews)
R/A/D/OV Ensure a clear purpose and role for consumers from diverse backgrounds,16 35 with
well- dened recruitment and support processes to support this.35 40
Provide feedback and acknowledgement of participation (eg, a certicate),16 cover
expenses and consider providing compensation.16,Int- C
Review the engagement: ask consumers for their feedback,8 35 40 or conduct a formal
evaluation.35 40 Share examples of success.18
Allow additional time for engagement.16,18,35,Int- GL; GL
Allow additional resources for engagement (eg, for interpreters or travel),39,40,Int-
GL; GL,18 but some adaptations (eg, alternate ways of running GDG meetings) are
cost- neutral.36
“Make your purpose of the group clear. Like, this is what we're here to do, this is why
you are here, this is the overall goal, why this is important.”35 (p.9)
“It is important to formally thank participants, for example with a letter or certicate
(…). It may be possible to accredit certain forms of participation, which could be
useful (for people) with limited work experience.”16 (p.60)
“The key takeaway that I had was in the very early stages when you're negotiating the
guideline to happen just asking for enough money and enough time.” Int- GL
Category 2: Engaging diverse groups in the guideline development group
4. Characteristics
of guideline
personnel
(seven
documents, 2
interviews)
R/A/D/OV Ensure chair is skilled in facilitation and is able to actively support involvement of
diverse groups,16 35 36 39,Int- C; C acknowledging some consumers from diverse
backgrounds do not like direct questioning.35
Ensure the GDG is supported by people with skills and experience working with the
diverse group(s).8 16
Ensure the chair and other guideline personnel are familiar with relevant history,
cultural practices and safety measures8 16 18 39 and recognise the diversity of views
and backgrounds within a single diverse group.18 35 40
Make certain guideline personnel are sensitive to their own cultural beliefs
and behaviours18,40,Int- C as misperceptions and stereotypes hinder
engagement.35,40,Int- C
Make sure there is diversity among GDG members, reecting the ethnic or racial
diversity of the consumer group.35 40
“The chair I've got is in no way patronising to patients. We are treated the same as
any other committee member. In fact, sometimes we maybe get a little bit more sway.
He will say, what do you think?” Int- C
”Take the time to learn about local history and traditions including traditional names
for the lands and languages and the local families. Local Aboriginal community-
controlled organisations can be contacted to ask about local protocols and how to
follow them.” 18
“When considering culturally diverse communities it is important to remain attuned to
the tendency to homogenise differences in backgrounds, viewpoints and needs.”40
(p.29)
5. Consumers’
role,
characteristics,
and prominence
(5 documents, 2
interviews)
P/R/A/D/OV Most consumers from diverse backgrounds can and should be involved as full and
equal GDG, even if this requires some adjustments.8,16,18,36,Int- C For priority topics,
they might co- chair the GDG.18
Include at least two consumers on the GDG, but potentially four or more.18 35 36
Consider smaller groups to make consumers feel more comfortable to share their
views.35 36
Engaging consumers from diverse backgrounds can be tokenistic.8,Int- C Consumers
should have the skills and condence to make an active contribution, Int- C; C,35 however
they can be intimidated by professionals8,35,Int- C and other consumers or carers.35
Use a consumer representative when people from the diverse group can’t take part
or for a different perspective35,Int- C although including people with lived experience
is ideal.Int- C
“These ndings indicate that people with learning disabilities can be included as full
members of (guideline) groups with reasonable adjustments.”36 (p.253)
“These (meetings) are very important; you have a duty and responsibility to other
patients. I fully believe in equality of access, but if you're not able to do it then
somebody who can has to do it. Because that voice is not going to be heard and it
has to be heard.” Int- C
“It’s not necessarily the person themselves, as much as someone who has experience
of what these people are going through. Because it would be quite difcult to have
someone of a certain age be there and contribute and be there all the time.” Int- C
Continued
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Theme
(sources)
PROGRESS-
PLUS Components Illustrative quotes
6. Preparing
and supporting
consumers
(7 documents, 3
interviews)
R/A/D/OV Offer consumers training in the content and process.8 16 35
Provide an ongoing, proactive support person to provide practical, technical or
emotional support35,Int- C; C; GL
Ask consumers about their support needs and meeting preferences at the
outset.35,39,Int- C This might include interpreters and translating services,18 39 40 a
support person or carer attending meetings35 39 and alternate ways of sharing their
views (eg, written feedback subsequent to meetings).35 39
Send meeting documents (tailored to individual needs) in advance to give consumers
time to prepare.16,35,39,Int- C
Consider pre- meeting contact, for example, to discuss meeting documents or for
venue orientation,16 36 39 although too much communication can be overwhelming.35
Use understandable language during meeting and paperwork.16 35 36 40
Use accessible and structured formats for decision- making and sharing opinions.8 35 36
“There was one particular person who coordinated things. I had contact with her
regularly. She would ring and say, how are things going? (…) We would discuss quite
a lot of things, so the support was there if one wanted it.” Int- C
“Ask if a communication support person will be attending, if they have difculty
understanding written or spoken language and what specic strategies would be most
helpful for them.” 39
“Send copies of agenda papers well in advance. Check if they want to have a chat
about the content prior to the meeting and arrange main topic points in bullet list.” 39
“Multiple individuals mentioned the advantage of having an established process for
making sure that everyone has a chance to share an opinion.”35 (p.9)
Category 3: Other (non- guideline development group) engagement approaches
7. Online
methods
(5 documents, 4
interviews)
P/R/E/SES/A/D Online methods preference the participation of well- educated, online- procient
consumers with internet accesss.34,38,Int- GL
Online methods facilitate engagement for people with physical or social
disabilities,34,37,39,Int- GL; C those in geographically dispersed areas in mostly high-
income countries,34 37 38 and young people.34
Online methods hinder participation for people with cognitive disability,34 and people
who are disadvantaged and living in low and low- middle income countries.Int- GL
Online Delphis facilitate community building and sharing of experiences, with their
staggered contribution reducing participation burden.37
Online GDG meetings offer less opportunity for explanation, less team building, and
shorter meetings.Int- C, C Multiple, in- person meetings may help build group dynamics.35
“The online submission probably had the least barriers to participation (…) and we
probably had a little bit more diversity. It was the easiest. You didn't need to go
anywhere. You didn't need to be in a social situation. It was all anonymous. Whereas
with our workshops I don't think we got as much participation.” Int- GL
“There’s something about meeting face to face and having coffee breaks and a
preamble. It seems on Zoom quite formal and you can't chit chat with anybody. You're
there and you're down to business. (…), there’s no room for, what sort of weekend did
you have? (…) So it puts off all the informalities, which are part of group bonding.” Int- C
8. Consultations
and research-
based
approaches
(3 documents, 2
interviews)
R/A/D/OV For some diverse groups it is impractical to include them in the GDG (eg, children,
people with severe cognitive limitations),16 while others may prefer a separate
consultation (eg, those with limited condence or culturally and linguistically diverse
groups).16 40
In these instances, families or advocates could join the GDG with additional
consultation approaches (reference groups, advisory groups or expert testimony)16
used to capture consumer views.
Consultation approaches can be used at key stages of the guideline development
process to widen the range of views, address a specic issue and ll evidence
gaps.16 18
Specic recommendations for reference groups: know your objectives and
recruitment criteria, consider participant welfare, induction and support needs,
provide participation rewards and feedback16 and ensure transparent report back to
the GDG.Int- C
Research- based methods, including interviews, group- based methods or surveys
(conducted in person, by phone or online) are appropriate in response to gaps in the
evidence that cannot be lled by more participatory approaches.16,Int- GL
Specic suggestions regarding research based approaches: tailor approach to the
diverse group, use people with research expertise and experience working with
the diverse group, and pilot tested16,Int- GL however this can be challenging and
disadvantaged groups can’t always answer questions framed in ways to feed into the
guideline.Int- GL
“It may be appropriate to have CALD (culturally and linguistically diverse)- specic
(…) initiatives or to integrate CALD consumers and their experiences within the more
generic process.”40 (p.24)
“We recommend you consider alternative approaches to involving people with the
condition or from the affected population. One option is to have a reference group or
panel to help the guideline group identify patients’ perspectives and priorities at key
stages of guideline development, and beyond to dissemination and implementation.”16
(p.56)
“The only problem (with seeking consumer views outside a GDG meeting) is that (…)
they evolve from discussion. As long as those views are brought to each meeting in
written form or whatever form (…) those would be added by patients or patient reps
while they're there.” Int- C
“The second challenge is if you ask patients to give the best treatment outcome
from their point of view, some cannot think what you are trying to ask. If you identify
your four best treatment outcomes (…) this is what you want to formulate your
recommendation. But that’s not the response you get from the patient.” Int- GL
.A, age; D, disability; E, education; G, gender and sex; GDG, guideline development group; Int- C, interview with consumer; Int- GL, interview with guideline developer; NICE, National Institute for Clinical Excellence; O, occupation; OV, other
vulnerable; P, place of residence; R, race/culture/ethnicity/language; Re, religion; SC, social capital; SES, socioeconomic status; SO, sexual orientation.
Table 2 Continued
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theme, the description pertains to multiple PROGRESS-
PLUS categories; with Race/culture/ethnicity/language,
Age, and Disability the most commonly represented. We
describe the components of each theme derived from
(documents and interviews) and provide illustrative
quotes. Each theme contains the views of consumers and
guideline developers.
Three themes relate to general concepts about engaging
diverse groups in guidelines. Establish respectful part-
nerships (theme one) at the outset with organisations
and individuals who represent diverse groups to facili-
tate a range of different activities. Recruitment (theme
two) should build on partnerships and be tailored to the
topic and demographics of consumers. The expectations
of consumers’ role and review processes should be clear
(theme three).
Three themes relate specifically to engaging diverse
groups in the GDG. Characteristics of guideline personnel
(theme four) should include relevant skills, experi-
ence and understanding about working with diverse
groups, sensitivity to their own cultural beliefs and they
should reflect the racial or ethnic diversity of consumers
involved. Regarding consumers’ role, characteristics and
prominence (theme five), most consumers from diverse
backgrounds can be GDG members. They need sufficient
skills and confidence, but also benefit from having more
than two consumers in the group and smaller group
meetings. Consumers need to be prepared and supported
(theme six) through training and ongoing support, with
many potential meeting adaptations such as using under-
standable language in meetings and paperwork.
Two themes relate to other (non- GDG) engagement
approaches. Online methods (theme seven) can facili-
tate the participation of some diverse groups (eg, social
disability) and hinder participation for others (eg,
cognitive disability). Consultations and research- based
approaches (theme eight) may be necessary or preferred
for some diverse groups.
Summary of implemented approaches for boosting diversity
of consumers in guidelines
Six documents8 16 18 36–38 included a description of one
or more implemented engagement approaches to boost
diversity of consumers in guidelines (see online supple-
mental material 4).
These 12 engagement activities occurred in the UK
(n=5), Australia (n=3), Europe (n=2), unspecified low-
income and middle- income countries (n=1) and the USA
(n=1). The following PROGRESS- PLUS categories were
included: Age (n=4), Disability (n=4), Other vulnerable
(n=3), Race/culture/ethnicity/language (n=3), Place of
residence (n=2), Sexual orientation (n=1) and Gender
and sex (n=1).
Broadly, the engagement approaches included: consumer
members of the GDG (including as chair; n=3); consumer
members of the GDG plus other activities, such as a work-
shop (n=2); and consumer advisory groups external to
the GDG (n=2). In these examples, consumers were likely
involved across all guideline development stages. The
remaining examples (n=5) used consultation approaches,
such as workshops and online surveys, in which consumers
might be engaged in one guideline stage (developing
recommendations, or priority setting and topic selection) or
multiple stages. The reports for nine of the 12 implemented
approaches provided a description of the engagement
methods used with no additional reflections or recommen-
dations from those involved.
DISCUSSION
From 10 included documents and four interviews with
consumers and guideline developers we devised eight
themes summarising principles and approaches to
broaden the diversity of consumers engaged in guidelines.
Three themes related to general concepts about engaging
diverse groups in guidelines, including respectful partner-
ships, recruitment and expectations, process and review.
Three themes relate to engagement in the GDG, including
characteristics of guideline personnel, consumers’ role,
characteristics and prominence and preparing and
supporting consumers. The final two themes related to
other engagement approaches, including online methods,
and consultations and research- based approaches. Across
themes, the most commonly included PROGRESS- PLUS
categories were Disability, Race/culture/ethnicity/
language, Place of residence and Other vulnerable (eg,
‘disadvantaged groups’). Each theme included the views
of consumers and guideline developers. In addition,
we found descriptions of 12 implemented engagement
approaches to boost diversity of consumers in guidelines.
They included a mix of methods, such as GDG member-
ship, consumer advisory groups and different consulta-
tion approaches, but included limited information about
how they did this (eg, partnerships, recruitment, support
to consumers). We found very little information about
engaging consumers from diverse backgrounds in guide-
lines in low- income and middle- income countries, and
scant or no information relating to the PROGRESS- PLUS
categories of Education, Socioeconomic status, Sexual
orientation, Occupation, Religion, Social Capital. We also
found very little research exploring the perspectives of
consumers from diverse backgrounds, nor many descrip-
tive reports or evaluations about implemented engage-
ment approaches.
The few existing systematic and related reviews on
consumer engagement in guidelines9 11 41 yield very little
related to any aspect of diversity.9 Thus, this review provides
the first in- depth exploration of how to include people
from diverse backgrounds in guidelines, with examples of
how this has been done in practice. There is substantially
more literature exploring diversity in consumer engage-
ment in the broader areas healthcare and research
(which includes guidelines).11 42 There is considerable
overlap between our results and this literature. For
example, partnering with diverse community groups to
plan and undertake engagement is recommended,11 43 as
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is ensuring the professionals involved view consumers as
equal and possess linguistic and cultural competency.11 43
Two important factors in the diversity literature that are
supported by our findings (while not being standalone
themes) are the importance of trusting, long- term rela-
tionships17 42 and identifying and mitigating power imbal-
ances.11 43
Many of our findings are not unique to engaging people
from diverse backgrounds in guidelines, but reflect recom-
mended practice in consumer engagement in guidelines
more broadly. For example, consumers should be set up with
clear role expectations,9 39 their contribution appropriately
acknowledged and be given an opportunity to feed back
about their experience.39 44 Further, consumers and guide-
line developers should be offered guidance and ongoing
support in their respective roles.9 39 44 However, compared
with our findings, there is less emphasis in this literature on
building formal and respectful partnerships with individuals
and organisations, and on the use of engagement methods
beyond membership of the GDG, where often only a small
number of consumers are involved.
Considered together, we believe there are three over-
arching concepts that underpin our findings and speak
to where attention should be paid when engaging diverse
groups in guidelines. First, the importance of establishing
trusting, long- term relationships, where consumers’
expertise is respected and valued (eg, respectful part-
nerships and expectations, process and review themes).
The second is mitigating power imbalances, giving
consumers every chance to make an active contribution
(eg, preparing and supporting consumers and guide-
line developer characteristics theme). Third is meeting
consumers where they are at, through the use of flexible
and tailored engagement methods and practices (eg,
consumers’ role, characteristics and prominence theme
and non- GDG methods category).
The strengths of this study are that we included evidence
from a variety of sources (eg, research studies and guid-
ance reports) and augmented review findings with inter-
views to provide the greatest depth and breadth of the
findings. We also used a highly structured data charting
process and rigorous descriptive synthesis to synthesise
and summarise the findings.
One limitation is that we are unlikely to have captured
all relevant evidence. Some of our included documents
(specifically guidance manuals and reports) were found
via online searches, rather than bibliographic databases,
where it is difficult to ensure comprehensive searches.
We also suspect there are many examples of consumer
engagement with diverse groups in guidelines that
remain unpublished. For example, we found eight brief
descriptions of implemented consumer engagement
approaches in two included documents16 18 yet only
one45 had been published separately in full. However,
given the breadth of issues we identified, this may not
have altered the results but rather strengthened specific
findings or provided additional illustrative examples.
A second limitation is that only a single researcher
conducted the descriptive synthesis (with checks by a
second researcher). If we had conducted independent
double coding the interpretation and organisation of
synthesis concepts may have been different, meaning the
final conclusions may have differed. In terms of implica-
tions for policy and practice, our findings have relevance
to guideline organisations and funders. Creating an envi-
ronment in which consumers from diverse groups are
valued and included in guideline development requires
organisational support and commitment, such as policies
and procedures and additional resources, for example,
to train and support guideline developers. Such organisa-
tions may need to develop the capacity in this area before
encouraging guideline developers to engage with diverse
groups. For guideline developers, the general principles
of consumer engagement (eg, planning, identifying who
to include, training, support, attention to inclusive prac-
tices) still apply but careful attention should be paid to
building formal partnerships with organisations and
individuals representing diverse groups and working
with them to plan the engagement activities. Further, the
skills, experience, attitudes and backgrounds of the GDG
should be carefully considered, and developers should
be prepared to be flexible and inclusive in the specific
approach (including non- GDG methods, if appropriate).
While this review identified that most consumers from
diverse backgrounds can be included in the GDG (with
adaptations), other engagement approaches will be pref-
erable for some consumers and some guideline contexts.
Not all concepts and approaches we identified will be
relevant to all diverse groups. Instead, the ideas could
help shape or refine their engagement plans and make it
a more satisfactory experience all round.
Researchers could build a more complete picture of
ways to boost diversity of consumers engaged in guide-
lines with more reports detailing how consumers from
diverse backgrounds have been engaged in guidelines,
along with parallel evaluations, or standalone research,
exploring the perspectives of consumers and guideline
developers. Particular settings (low- income and middle-
income countries) and diversity categories (Education,
Socioeconomic status, Sexual orientation, Occupation,
Religion, Social Capital) warrant attention. The inclusion
of more illustrative examples, or providing more depth to
some of the descriptive themes, would allow the results to
be turned into more comprehensive guidance for guide-
line developers, for example, building on the existing
work of Guidelines- International- Network in this area.16
CONCLUSIONS
Guidelines must be developed in a way that ensures they
support equitable decision- making and health outcomes.
Engaging consumers from diverse groups is one way to do
this, however these groups are often excluded from guide-
line development. In a scoping review, we found 10 docu-
ments and conducted four interviews with consumers and
guideline developers, identifying eight themes describing
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principles and approaches for boosting the diversity of
consumers engaged in guidelines. The themes speak
to the importance of relationship- building, mitigating
power imbalances and meeting consumers where they
are at. Many themes reflect good practice in consumer
engagement in guidelines, more broadly, but engaging
with diverse groups may require greater attention to
building formal, respectful partnerships and employing
inclusive engagement. Both guideline organisations
and funders have a role to play in creating a supportive
environment. These findings offer guideline developers
many ideas to shape or refine their approaches regarding
consumers from diverse backgrounds, and therefore
provide all parties with more meaningful and valuable
experience and outcomes.
Twitter Anneliese Synnot @anneliesejs, Allison Jauré @allisonjaure and Tari Turner
@tari_turner
Acknowledgements We acknowledge Anne Parkhill for devising the search
strategy and Jack Hewitt for his assistance with screening.
Contributors AS led the study design, contributed to search development,
conducted study screening and the interviews, conducted the analysis and
interpretation, drafted the manuscript, and is responsible for the overall content
as guarantor. SH contributed to the study design, critically reviewed the analysis
and interpretation, provided supervision throughout the review process, and
critically reviewed the manuscript for important intellectual content. AJ contributed
to the study design, critically reviewed the analysis and interpretation, provided
supervision throughout the review process, and critically reviewed the manuscript
for important intellectual content. BM contributed to the study design, and critically
reviewed the analysis and interpretation, and critically reviewed the manuscript
for important intellectual content. KH conceived the original idea and contributed
to the overall study design, critically reviewed the analysis and interpretation, and
critically reviewed the manuscript for important intellectual content. PB contributed
to the study design, and critically reviewed the manuscript for important intellectual
content. AL contributed to the study design and conducted study screening, and
critically reviewed the manuscript for important intellectual content. TT conceived
the original idea and contributed to the overall study design, contributed to study
screening and validated the data charting and analysis, provided supervision
throughout the review process, critically reviewed the analysis and interpretation,
and contributed to drafting the manuscript. All authors approved the nal version of
the manuscript before publication.
Funding This work was supported part by the Stroke Foundation, as part of a
larger project to test living stroke guidelines, funded by the Australian Government
via the Medical Research Future Fund. Further nancial support was provided in
part by the National Health and Medical Research Council (NHMRC), an Australian
Government statutory agency. AS is supported by a Postgraduate Scholarship
(APP1132803) and AT is supported by an Investigator Grant (APP1197324). The
funding agreements ensured the authors’ independence in designing the study,
interpreting the data, writing and publishing the report.
Competing interests None declared
Patient and public involvement Patients and/or the public were not involved in
the design, or conduct, or reporting, or dissemination plans of this research.
Patient consent for publication Not applicable.
Ethics approval This study involves human participants and was approved by
Monash University Human Ethics Committee (reference number 23693) and La
Trobe University Human Ethics Committee (reference number 23693). Participants
gave informed consent to participate in the study before taking part.
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement All data relevant to the study are included in the
article or uploaded as supplementary information.
Supplemental material This content has been supplied by the author(s). It has
not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been
peer- reviewed. Any opinions or recommendations discussed are solely those
of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and
responsibility arising from any reliance placed on the content. Where the content
includes any translated material, BMJ does not warrant the accuracy and reliability
of the translations (including but not limited to local regulations, clinical guidelines,
terminology, drug names and drug dosages), and is not responsible for any error
and/or omissions arising from translation and adaptation or otherwise.
Open access This is an open access article distributed in accordance with the
Creative Commons Attribution Non Commercial (CC BY- NC 4.0) license, which
permits others to distribute, remix, adapt, build upon this work non- commercially,
and license their derivative works on different terms, provided the original work is
properly cited, appropriate credit is given, any changes made indicated, and the use
is non- commercial. See:http://creativecommons.org/licenses/by-nc/4.0/.
ORCID iDs
AnnelieseSynnot http://orcid.org/0000-0002-4008-4208
TariTurner http://orcid.org/0000-0002-7990-1623
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