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Using narratives to impact health policy-making: a systematic review

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Background There is increased interest in using narratives or storytelling to influence health policies. We aimed to systematically review the evidence on the use of narratives to impact the health policy-making process. Methods Eligible study designs included randomised studies, non-randomised studies, process evaluation studies, economic studies, qualitative studies, stakeholder analyses, policy analyses, and case studies. The MEDLINE, PsycINFO, Cochrane Library, Cumulative Index to Nursing and Allied Health Literature (CINAHL), WHO Global Health Library, Communication and Mass Media Complete, and Google Scholar databases were searched. We followed standard systematic review methodology for study selection, data abstraction and risk of bias assessment. We synthesised the findings narratively and presented the results stratified according to the following stages of the policy cycle: (1) agenda-setting, (2) policy formulation, (3) policy adoption, (4) policy implementation and (5) policy evaluation. Additionally, we presented the knowledge gaps relevant to using narrative to impact health policy-making. Results Eighteen studies met the eligibility criteria, and included case studies (n = 15), participatory action research (n = 1), documentary analysis (n = 1) and biographical method (n = 1). The majority were of very low methodological quality. In addition, none of the studies formally evaluated the effectiveness of the narrative-based interventions. Findings suggest that narratives may have a positive influence when used as inspiration and empowerment tools to stimulate policy inquiries, as educational and awareness tools to initiate policy discussions and gain public support, and as advocacy and lobbying tools to formulate, adopt or implement policy. There is also evidence of undesirable effects of using narratives. In one case study, narrative use led to widespread insurance reimbursement of a therapy for breast cancer that was later proven to be ineffective. Another case study described how the use of narrative inappropriately exaggerated the perceived risk of a procedure, which led to limiting its use and preventing a large number of patients from its benefits. A third case study described how optimistic ‘cure’ or ‘hope’ stories of children with cancer were selectively used to raise money for cancer research that ignored the negative realities. The majority of included studies did not provide information on the definition or content of narratives, the theoretical framework underlying the narrative intervention or the possible predictors of the success of narrative interventions. Conclusion The existing evidence base precludes any robust inferences about the impact of narrative interventions on health policy-making. We discuss the implications of the findings for research and policy. Trial registration The review protocol is registered in PROSPERO International prospective register of systematic reviews (ID = CRD42018085011). Electronic supplementary material The online version of this article (10.1186/s12961-019-0423-4) contains supplementary material, which is available to authorized users.
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R E V I E W Open Access
Using narratives to impact health policy-
making: a systematic review
Racha Fadlallah
1,2
, Fadi El-Jardali
1,2
, Mohamed Nomier
1
, Nour Hemadi
1
, Khurram Arif
1
, Etienne V. Langlois
3
and
Elie A. Akl
1,4*
Abstract
Background: There is increased interest in using narratives or storytelling to influence health policies. We aimed to
systematically review the evidence on the use of narratives to impact the health policy-making process.
Methods: Eligible study designs included randomised studies, non-randomised studies, process evaluation studies,
economic studies, qualitative studies, stakeholder analyses, policy analyses, and case studies. The MEDLINE,
PsycINFO, Cochrane Library, Cumulative Index to Nursing and Allied Health Literature (CINAHL), WHO Global Health
Library, Communication and Mass Media Complete, and Google Scholar databases were searched. We followed
standard systematic review methodology for study selection, data abstraction and risk of bias assessment. We
synthesised the findings narratively and presented the results stratified according to the following stages of the
policy cycle: (1) agenda-setting, (2) policy formulation, (3) policy adoption, (4) policy implementation and (5) policy
evaluation. Additionally, we presented the knowledge gaps relevant to using narrative to impact health policy-
making.
Results: Eighteen studies met the eligibility criteria, and included case studies (n= 15), participatory action research
(n= 1), documentary analysis (n= 1) and biographical method (n= 1). The majority were of very low
methodological quality. In addition, none of the studies formally evaluated the effectiveness of the narrative-based
interventions. Findings suggest that narratives may have a positive influence when used as inspiration and
empowerment tools to stimulate policy inquiries, as educational and awareness tools to initiate policy discussions
and gain public support, and as advocacy and lobbying tools to formulate, adopt or implement policy. There is also
evidence of undesirable effects of using narratives. In one case study, narrative use led to widespread insurance
reimbursement of a therapy for breast cancer that was later proven to be ineffective. Another case study described
how the use of narrative inappropriately exaggerated the perceived risk of a procedure, which led to limiting its
use and preventing a large number of patients from its benefits. A third case study described how optimistic cure
or hopestories of children with cancer were selectively used to raise money for cancer research that ignored the
negative realities. The majority of included studies did not provide information on the definition or content of
narratives, the theoretical framework underlying the narrative intervention or the possible predictors of the success
of narrative interventions.
Conclusion: The existing evidence base precludes any robust inferences about the impact of narrative
interventions on health policy-making. We discuss the implications of the findings for research and policy.
Trial registration: The review protocol is registered in PROSPERO International prospective register of systematic
reviews (ID = CRD42018085011).
Keywords: Narrative, storytelling, health policy-making, systematic review
* Correspondence: ea32@aub.edu.lb
1
Center for Systematic Review for Health Policy and Systems Research,
American University of Beirut, Beirut, Lebanon
4
Department of Internal Medicine, American University of Beirut, Beirut,
Lebanon
Full list of author information is available at the end of the article
© The Author(s). 2019 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0
International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and
reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to
the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver
(http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
Fadlallah et al. Health Research Policy and Systems (2019) 17:26
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Background
Narratives, also referred to as storytelling, exemplars and
testimonials, can be used to convey information because
they are easily understandable and memorable [1,2].
While there is no commonly accepted definition of a nar-
rative, it is generally agreed that it should provide an ac-
count of an individuals experience and include appealing
detail, characters and some plot [37]. It may be commu-
nicated through a wide range of formats, including verbal
(narrated), print, audio and video [8,9].
Narratives can facilitate information processing and pro-
vide value and emotional appeal to the information pro-
vided [8,10]. Additionally, people can relate to narrative
information regardless of their level of literacy, expertise
or culture [11,12]. These narratives have been demon-
strated to be both memorable and persuasive [13,14].
Several theoretical perspectives have been considered to
explain the persuasiveness of narrative information
[8,1520]; see Table 1for a description of these models.
The communication literature offers some insights on
the effects of different ways of communicating informa-
tion on behaviour. First, individuals make choices based
on incorporating both factual and narrative information;
narrative information influences individualschoices dir-
ectly (system 1) and indirectly via cognitions (system 2),
and the persuasiveness of narrative or statistical infor-
mation varies depending on the characteristics and expe-
riences of the recipients [21,22]. These insights imply
that it is naive to assume that it is sufficient to present
people with facts, and expect that they will weigh these
in a rational manner and act accordingly [23].
There is growing recognition among experts in the
field of public policy-making of the need to incorporate
narrative as an important component of the broad evi-
dence base required to inform complex policy-making
processes [23,24]. This is particularly so given that policy
decisions are often value-driven and political, not just
evidence-based choices [25], and that policy-makers and
public health professionals operate on a different hierarchy
of evidence compared to researchers [26]. For instance,
policy-makers prefer information that is concise, appealing
and relevant to current health policy debates [2729].
As highlighted by Cairney and Kwiatkowski [30],
policy-makers attach cognitive and emotional shortcuts to
thoughts and action, often without fully understanding the
reasons for that action; therefore, bombardingthem with
evidence can be less effective than presenting them with
compelling stories or using other framing techniques to har-
ness their cognitive biases. In this sense, narrative informa-
tion can be more useful than statistical data, partly because
the latter can be seen as too complex, not policy-relevant,
tedious or lacking context sensitivity [31,32].
The use of narratives in the policy environment can help
identify important policy issues, point to problems with
existing policies, provide evidence that a programme or law
is working as intended, and assist policy-makers in thinking
about the consequences of policy options [10,27,31,33].
For instance, personal stories of breast cancer have been
key in creating significant changes in health policies and
Table 1 Description of models relevant to narratives
Model Description
Elaboration likelihood
model (ELM)
Under this widely adopted ELM,
persuasive situations involve a
central and a peripheral route [15].
In the central or systematic route,
people think deeply about the
message and assess the validity
of the information. In the peripheral
or heuristic route, people assess
characteristics of the message,
such as its attractiveness; the
personal relevance of the message
determines the route that will be
used for its perception [15]
Greens transportation-
imagery model
This model states that the
persuasiveness of a narrative
depends on the extent to
which people are engaged in
the story events, a phenomenon
called transportation[17]. In this
model, recipients are totally
immersed in the story and engage
emotionally with the story characters
and events. Therefore, they are less
likely to counter-argue the narrative
claims; this contrasts with the ELM,
where recipients elaborate on the
story with their thoughts, ideas and
previous experiences [16]
Entertainment overcoming
resistance model
According to this model, when
recipients are engaged within the
story (Transportation), or when
they relate to characters similar
to themselves (Identification),
they are less likely to be resistant
to receive the message and change
their attitude and behaviour [18,20].
According to this theory, several
narrative characteristics could
determine how much the recipients
can accept the message such as the
level of suspense and imagery in the
narrative and the degree of realism
that recipients can associate with the
story [19]
Kahnemans two-system
way of thinking
Kahneman distinguishes between
two systems of thinking: System 1
(Thinking Fast) is the intuitive way
of thinking and making decisions
(i.e. relying on heuristic or cognitive
shortcuts that develop as part of
peoples experiences), while
System 2(Thinking Slow) is the
analytical and deliberate way of
making decisions (i.e. weighing
the advantages and disadvantages)
[7]. Systems 1 and 2 are differentially
activated by different aspects of
narratives
Fadlallah et al. Health Research Policy and Systems (2019) 17:26 Page 2 of 22
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legislative allocations in the United States [33]. While
there is a growing number of reports on the use of
narrative-based interventions to shape policy-making,
we are not aware of any systematic synthesis of that
body of evidence. The objective of this study was to
systematically synthesise the evidence on the use of
narratives to impact health policy-making.
Methods
Study design and definitions
We conducted a systematic review of the literature, fol-
lowing standard methodology. We registered the review
protocol in the PROSPERO International prospective
register of systematic reviews (ID = CRD42018085011)
and we followed the PRISMA guidelines for reporting
systematic reviews.
For the purpose of this study, we conceptualised a nar-
rative as an illustration of an experience in a story-like
format, presented in either the first or the third person
[2]. The terms that we considered as referring to narra-
tivesinclude storytelling, anecdotes, exemplars, testimo-
nials and policy narratives [7,21]. Given that the goal of
this review was to inform those interested in using narra-
tive information to affect health policy-making, we re-
stricted our eligibility to studies where the primary purpose
of using a narrative was to affect policy-making (i.e. narra-
tive as a planned intervention). The narrative could be pre-
sented in any format (e.g. verbal, print, audio/radio, video)
or perspective (first- or third-person narrative).
Public policy refers to government policy and includes
programmes, plans, rules, legislation, guidelines, state-
ments or positions taken by government or governmental
departments with the aim of achieving population-level
change (whether at the sub-national, national or inter-
national level) [34]. This excludes policies confined to one
institution only or those related to individual-level clinical
interventions [35]. We only considered public policies per-
taining to health.
Eligibility criteria
We used the following eligibility criteria:
Type of studies: We included a range of types of studies
to account for the diverse literature on narratives and the
complex nature of evidence in the policy sector [36]. Specif-
ically, we included randomised studies, non-randomised
studies (e.g. cohort studies, before and after studies,
retrospective studies, and cross-sectional studies),
process evaluation studies, economic studies, qualita-
tive studies, stakeholder analyses, policy analyses and
case studies. We excluded news articles, books, letters,
commentaries, opinion pieces, proposals, reviews and
studies published in abstract format only. We also
excluded studies where narrative was mentioned as
part of the background information only.
We did not exclude studies based on date of publica-
tion or language.
Population: We included studies where the
narrative intervention targeted legislators, policy-
makers, representative of professional associations,
governmental representatives or any other individuals
involved in health policy-making. We excluded studies
where the narrative intervention targeted patients
or people in their individual capacity (e.g. in a
clinical setting).
Interventions: Narratives used as standalone or as
part of a multi-component intervention with the
primary purpose of influencing health policy-making
in a real-world setting. We excluded studies where
the narrative was not an explicit or deliberate
component of the intervention. We also excluded
studies that assessed message-framing only or that
used narrative for information delivery without
any link to the policy cycle.
Comparison: We included studies regardless of
whether or not they have a comparison group.
Outcomes: We included studies that examined the
influence of narrative information on any of the
stages of health policy-making in a real-world setting
[37]. We stratified findings according to the stages
of policy-making, as defined by the Stages Heuristic
framework, as follows: (1) agenda-setting, (2)
policy formulation, (3) policy adoption, (4) policy
implementation and (5) policy evaluation (see
Tabl e 2for a detailed definition of the different
stages) [3740]. We excluded studies that
assessed proxy outcomes such as changes in
knowledge, beliefs, attitude, preferences or intentions.
We also excluded studies that involved individuals
making hypothetical decisions. Additionally, we
excluded studies that assessed the impact of narrative
on public opinion only or that examined policy-making
processes beyond the health or health-related sector.
Settings: We included any country, state or
community
Search strategy
We searched the following electronic databases up to Feb-
ruary 2017: MEDLINE, PsycINFO, Cochrane Library, Cu-
mulative Index to Nursing and Allied Health Literature
(CINAHL), WHO Global Health Library, and Communi-
cation and Mass Media Complete. The search strategy
combined the two different concepts of narrativeand
public policy. To generate a list of search terms for each
concept, we first undertook an initial targeted search of
the literature, followed by an analysis of the text words
contained in the title and abstract of potentially relevant
studies as well as of the index terms used to describe the
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article. Additionally, we reviewed the search strategies
of relevant systematic reviews. This helped generate an
initial list of terms relevant to each of the two concepts
of narrativeand public policy, respectively including,
for example, narrative, narration, testimonial, anecdote,
exemplar, and story, and policy, public policy, health
policy, reform, lobbying, regulation, law enforcement,
policy-making, government, law, legislation, decree, jur-
isprudence, advocacy, decision-making, etc.
The search included both free-text words and medical
subject headings. We used the Boolean operator ORto
combine the terms within each concept and the Boolean
operator ANDto combine the different concepts. We
did not use any search filter for study type, language or
date of publication. The search strategy was validated by
an experienced medical librarian (Additional file 1).
We complemented the electronic database searches
with a variety of approaches to identify additional litera-
ture, including grey literature. We manually searched
Google Scholar and relevant journals like Health Affairs.
We also screened the reference lists of included studies
and relevant systematic reviews. In addition, we contacted
the authors of relevant articles and conference proceed-
ings for further information or additional material.
Study selection
We conducted the selection process in two phases,
namely title and abstract screening, wherein teams of two
reviewers screened the titles and abstracts of identified
citations, in duplicate and independently, for potential
eligibility and retrieved the full text of studies judged as
potentially eligible by at least one of the two reviewers,
and full-text screening, wherein two reviewers screened
the full texts in duplicate and independently for eligibility,
using a standardised and pilot-tested screening form, and
resolving disagreements by discussion or with the help of
a third reviewer.
Prior to the selection process, all the reviewers partici-
pated in a calibration exercise using a randomly selected
sample of 100 citations. The calibration exercise allowed
us to pilot the eligibility criteria to ensure they are ap-
plied in the same way across reviewers, thus enhancing
the validity of the process.
Data abstraction
Two reviewers abstracted data from eligible studies in
duplicate and independently using standardised and
pilot-tested data abstraction forms. They conducted a
calibration exercise on a randomly chosen sample to en-
sure adequate agreement and resolved disagreement by
discussion or with the help of a third reviewer if consen-
sus could not be reached.
Abstracted data focused on the variables of study design,
timeframe and background story; health topic, organiser,
target population and setting; narrative definition and the-
oretical framework used; format of narrative (verbal, print,
audio, video) and characteristics of the narrative informa-
tion (plot and characters); characteristics of the interven-
tion used to deliver the narrative; and policy outcomes
assessed.
Quality assessment
We planned to assess risk of bias and quality of reporting
of the included studies, using tools appropriate for the
study design. However, we did not assess the risk of bias
of included studies given that existing tools to critically
appraise the types of studies retrieved have not been vali-
dated, and thus have strong limitations at this stage (as
well as lack of consensus). We did assess the quality of
reporting of case studies according to the reporting stan-
dards developed by Rodgers et al. [41]. These standards
consist of 13 items grouped into four sections, as (1) de-
scribing the design (4 standards); (2) describing the data
collection (3 standards); (3) describing the data analysis (1
standard); and (4) interpreting the results (5 standards).
Table 2 Description of stages heuristic framework
Stage Description
Agenda-setting Process through which an issue or problem
reaches the policy agenda and gets the
attention of policy-makers; this usually
occurs when an interest group demands
government action on a problem, or when
there is public disagreement over ways in
which a problem should be addressed
Policy formation A set of policy alternatives and solutions is
generated and the public administration
concerned examines the various policy
options. Coalitions of actors strive, through
the use of advocacy strategies, to gain
priority for one specific option.
Policy adoption Decisions are made at the
governmental level, resulting
in a decision that favours one
or more options to addressing a
given problem. Decisions are given
a legal force or legitimised as a
result of the public statements or
actions of government officials; this
includes executive orders, laws and
appropriations, rules and regulations,
and administrative and court decisions
that set policy directions
Policy implementation This includes the actions and
mechanisms whereby adopted
policies are brought into practice;
social, economic, technological, and
political conditions significantly
influence the implementation
stage of public policies
Policy evaluation This assesses whether policies
have achieved their intended goals
and objectives; it covers the appraisal
of their content, their implementation
and their effects
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Data synthesis
We conducted thematic analysis and presented the results
in a narrative way, stratified according to the following
stages of the policy cycle: (1) agenda-setting, (2) policy for-
mulation, (3) policy adoption, (4) policy implementation
and (5) policy evaluation [37]. Two reviewers were in-
volved in the identification of the themes. Where applic-
able, we provided direct quotations. Additionally, we
assessed the knowledge gaps related to our topic. We
assessed five domains most commonly used in published
evidence gap maps, i.e. study design, interventions, setting,
population and outcomes [42].
Results
Study selection
Figure 1shows the PRISMA flow chart summarising the
study selection process. Out of 12,698 citations, we identi-
fied 18 eligible studies. We excluded 438 articles at the
full-text screening phase because they did not focus on
planned narratives as part of the intervention (n= 258), did
not focus on health or health-related issues (n= 18), did
not target population-level policy changes in a real world
setting (n= 135), were not a study design of interest
(e.g. commentary, review, magazine) (n= 25), or con-
tained duplicate information (n=2)(Additional file 2).
Characteristics of studies
Table 3describes the characteristics of the 18 included
studies in terms of study design, timeframe, background
story, health topic, target population, organisers of
narrative-based interventions, country, narrative defin-
ition and theoretical framework used, format of narrative
(verbal, print, audio, video), characteristics of the narra-
tive information (plot and characters), characteristics of
the intervention used to deliver the narrative, and policy
outcomes assessed.
The study designs were case studies (n= 15) [33,4356],
participatory action research (n=1) [57], documentary
analyses (n=1) [58] and biographical methods (n=1)[59].
Thirteen studies were from high-income countries
(Australia (n= 4), Republic of Ireland (n=1), United
States of America (n=8) and United Kingdom (n=1)),
four studies were from middle-income countries (Georgia
(n=1), China (n= 1), and South Africa (n= 2)) and one
study was from low-income countries (Rwanda (n=1));
one study included data from both Republic of Ireland
and Australia [43].
Fig. 1 Study flowchart
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Table 3 Characteristics of included studies
Study name
Study design
Time frame
Background story
Health topic, Target
population, Organiser,
Country
Definition of narrative
and theoretical
framework adopted
Format (verbal, print,
audio, video) and
characteristics of
narratives (plot and
characters)
Characteristics of the
intervention used to
deliver the narrative
Policy outcome assessed
(agenda-setting, policy
formulation, policy adoption,
policy implementation, policy
evaluation)
Beck et al., 2014 [58]
Documentary analysis
Timeframe not reported
Data of about 157
celebrities, including
athletes, actors, musicians,
and politicians, who
disclosed private information
regarding a personal health
situation (or that of a loved
one) with others in the
public domain were
collected by authors
Health topic: Multiple
sclerosis, cancer, Parkinsons
disease, Alzheimers disease,
HIV, Hugh Downs, bipolar II
disorder, eating disorder,
diabetes, paralysis, cystic
fibrosis, amyotrophic lateral
sclerosis
Target population: Congress,
national research organisations,
professional associations, and
general public
Organiser: Celebrities or their
family members
Country: United States of
America
Narrative boundaries,
informed by the theory
of Communication
Privacy Management
Construction of
narrative may be
understood from
performative and
dialogical perspectives
as always a joint
enterprise with an
active audience
Format: Brief comments in
the tabloids, interview on
television or for a magazine
about a condition, and verbal
(narrated)
Characteristics of narratives:
Not reported
Some celebrities have
established foundations
which focus on raising
money and/or awareness
while others have testified
before Congress on behalf
of themselves or their loved
ones for specific diseases
Agenda-setting:
Key functions that celebrity
health narratives performed
included education, inspiration
and activism (e.g. after hearing
the story of Michael Zaslow,
one senator committed to
doubling funding for research
at the National Institutes of
Health so that they can treat
and cure diseases such as
amyotrophic lateral sclerosis).
Although celebrities bring
much attention to a cause
on behalf of individuals
suffering from it, the
authors questioned whether
such advocacy should frame
federal priorities in terms of
funding
Fitzgerald, 2013 [44]
Case study
In 2006, 2010 and 2011,
attempts were made by
health policy advocates
to ignite policy debate
about the introduction
of supervised injecting
facilities in Australia;
despite numerous
attempts, only one
facility has been
introduced in Sydney,
thus this article retraces
the policy narratives to
reflect on the causes for
policy impermeability
Health topic: Supervised
injecting facilities (SIF) for
drug users
Target population:
Government
Organiser: Author and
other advocates for
implementation of
policies supporting
supervised injecting
facilities
Country: Australia
Narrative Policy Framework
approach
A policy narrative is the
story about a policy idea
embedded in documentation
about the idea. Like any story,
the narrative describes the
idea, frames the policy and
connects the idea with other
ideas and ultimately directs
those in the policy arena
to solutions to problems
Format: Photographs and
videos portraying drug users
Characteristics of narratives:
In Sydney, villains of police
corruption and police cynicism
were prominent in the Wood
Royal Commission that framed
SIF policy development,
whereas in the Melbourne
context, the policy narratives
focused on health and police
were cast alongside the drug
outreach workers as heroes
who would clean up the
streets with the real villains
being drug users
In Sydney and Melbourne,
two front-page newspaper
photographs reoriented the
SIF policy narrative, and the
policy narratives took
different directions:
In Sydney, the Sydney Sun
Herald photograph of a
teenage boy injecting in the
backstreets of Redfern was
the catalyst for commitment
to the 1999 drug summit
and mobilising support for
a SIF, especially since the
police could not be trusted
to provide order. In Melbourne,
the Melbourne Herald Sun
page 1 photograph captioned
How can we stop this?
reinforced a zero-tolerance
policing response with quest
for order reinforcing the
authority of the police, thus
undermining the legitimacy
of the SIF policy
Pictures were complemented
by trials, reports, royal
commissions and advocacy
Policy adoption:
In Sydney, 22 months
after the Drug Summit
Legislative Response Act
1999 was passed for the
trial of the supervised
injecting facilities, the
service opened in May 2001.
In Victoria, the bill failed to
pass through both Houses
of the Victorian Parliament
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Table 3 Characteristics of included studies (Continued)
Study name
Study design
Time frame
Background story
Health topic, Target
population, Organiser,
Country
Definition of narrative
and theoretical
framework adopted
Format (verbal, print,
audio, video) and
characteristics of
narratives (plot and
characters)
Characteristics of the
intervention used to
deliver the narrative
Policy outcome assessed
(agenda-setting, policy
formulation, policy adoption,
policy implementation, policy
evaluation)
Johnson et al., 2014 [43]
Case study
Time frame not reported
Concerns about barriers
facing individuals with
intellectual disabilities
in expressing their
sexuality or in having
sexual relationships,
prompted individuals
with intellectual
disabilities to conduct
research where they tell
their life stories and talk
about sexuality and
relationships, with
findings subsequently
used to promote
change
Health topic: Sexual lives
and relationships of people
with intellectual disabilities
Target population:
Government and general
public
Organiser: Individuals with
intellectual disabilities and
their advocates
Country: Australia and the
Republic of Ireland
Not reported Format: Short films,
theatres and plays, and
formal presentations
Australia: Three short films
of the stories of people with
intellectual disabilities
Ireland: Stories of people
with intellectual disabilities
provided the basis for a
creative analysis in the form
of theatre and plays
Characteristics of narratives:
not reported
Australia: Short films of the
stories of people with
intellectual disabilities were
used by organisations that
had been part of the advisory
group to lobby government
for a change to the existing
policy in relation to people
with disability and sexuality
Ireland: Use of theatre and
plays brought the group to
the notice of the media.
Research, drama and media
appearances brought the
issue of the prohibition
under Irish law of penetrative
sexual activity with a person
with intellectual disabilities
to public attention and two
representatives from the
research group were invited
to consultations with
government legislative
advisory body with regard
to reviewing the 1993 Act
in March 2011
Australia Policy formulation:
Drafting of a new policy for
state government in relation
to sexuality and relationships
and people with disabilities
which state that people with
disabilities had rights to
relationships and to a sexual
life, and set out rights and
responsibilities for people
with intellectual disabilities
and service providers about
relationships and sexuality
Ireland Agenda-setting:
The 1993 Act in the Republic
has not yet been changed, but
there is now a significant voice
from people with intellectual
disabilities informing discussion
of how this might happen
Krueger, 2007 [51]
Case study
Throughout mid-to-late
twentieth century, cancer-
related organisations
began integrating the
voices, images and stories
of young sufferers into
their annual campaigns
for the disease, although
children represented only
a small fraction of all
persons with cancer
Health topic: Early cancer
detection
Target population: Donors,
philanthropists, public and
politicians
Organiser: Publicists and
cancer campaigners in
the mid-twentieth century
Country: United States of
America
Not reported Format: Poster children with
all-American attributes and
interests (i.e. appealing to
regional donors, personified
cancer and served as
reminder that cancer did
not spare children)
Characteristics of narratives:
Heroic accounts and images
of children illustrating possibility
of remission and tumor regression
continued to be selective in
nature, carefully crafting
optimistic cureor hope
stories to raise money for
cancer research that ignored
negative realities
Staged photographs of
children with cancer
standing side by side
with famous personalities,
vividly demonstrating the
efficacy of new cancer
therapies at annual fund-
raising conventions, or
celebrating holidays in
hospital wards elevated
viewersemotional tie
to the cancer. Sentimental
images paired with
frightening captions and
text sent parents a stern
warning that any child,
every child or even their
child was vulnerable to
the threat of this disease
Agenda-setting:
More attention to children
cancers: Poster children were
strategically used throughout
the mid-to-late twentieth
century to advance principles
of early cancer detection
and prompt treatment; to
illustrate or, at times,
exaggerate promising
biomedical advances in
the field; and to elicit
emotional responses and
donations from a wide
audience during the escalation
of the war against cancer
Lander, 2007 [59]
Biographical method
Mifepristone, which
Health topic: Approval of
the drug mifepristone for
use as a treatment for
Not reported Format: Verbal (face-
to-face encounters)
and broadcasts
Mary Lander contacted
the Senator leading the
Australian Democrats. The
Policy adoption:
Parliament successfully
voted to repeal ministerial
Fadlallah et al. Health Research Policy and Systems (2019) 17:26 Page 7 of 22
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Table 3 Characteristics of included studies (Continued)
Study name
Study design
Time frame
Background story
Health topic, Target
population, Organiser,
Country
Definition of narrative
and theoretical
framework adopted
Format (verbal, print,
audio, video) and
characteristics of
narratives (plot and
characters)
Characteristics of the
intervention used to
deliver the narrative
Policy outcome assessed
(agenda-setting, policy
formulation, policy adoption,
policy implementation, policy
evaluation)
could halt the growth
of certain tumours, is
unapproved in Australia
because it interferes with
progesterone levels (i.e.
an abortifacient); in 2005,
the author triggered the
campaign to amend the
legal status of the drug
when she was diagnosed
with meningioma
meningioma
Target population: Legislators
Organiser: Mary Lander
(article author) who was
diagnosed with meningioma
Country: Australia
Characteristics of
narratives: Not reported
Senator found out that
the drug could be obtained
through the Special Access
Scheme of the Therapeutic
Goods Administration.
On 7 September 2005, the
Senator gave a speech in
Parliament entitled Matters
of public importance
mifepristone, launching
the campaign to amend
the legal status of the drug.
Mary Lander participated in
some broadcasts
responsibility for approval
of the drug mifepristone
in early 2006
Leith and Phillips, 2006 [46]
Case study
In 1994, the Optional
Coverage for Women
and Infants programme
under Medicaid was
greatly endangered due
to proposed legislative
budget cuts. Advocacy
summaries were used to
demonstrate to legislators
the need for continuing
the programme
Health topic: Optional
Coverage for Women and
Infants programme under
Medicaid
Target population: Legislators
Organiser: A state agency in
a south-eastern state
Country: United States of
America
Not reported Format: Advocacy
summaries that gave
a qualitative description
of personal experiences
of callers with the
programme
Characteristics of
narratives: Not reported
State agency ran a Medicaid
Advocacy Hotline, which
handed calls from pregnant
women, mothers of young
children and other family
members from across the
state. Information collected
from the hotline was used to
create thousands of advocacy
summaries consisting of brief
narratives of 3 to 8 sentences,
compiled by county and by
month/year. Advocacy
summaries were shared on
a monthly basis with a state-
wide interagency maternal
and child health Access Task
Force
Policy adoption:
Optional Coverage for
Women and Infants
programme was spared
from proposed legislative
budget cuts
Lorenzo, 2008 [57]
Qualitative research
approach using
participatory action
research (PAR)
Time frame not reported
People from impoverished
communities struggled to
gain daily access to
economic and social
resources because of
long distances, inadequate
public transport facilities
as well as overall poor
levels of service
Health topic: Disabled women
mobilising for an accessible
public transport system
Target population: Government
and disabled women
Organiser: Disabled People
South Africas Disabled
Womens Programme in the
Western Cape, the South
African Christian Leadership
Assembly Health Project,
and Department of
Occupational Therapy
at Cape Town
Interpretive Critical
Theory Paradigm
Format: A series of narrative
action reflection workshops
as an innovative method that
enables storytelling and action
learning collectively rather
than on a one-to-one basis
Characteristics of narratives:
Not reported
Storytelling and action
learning between workshops
were captured through
videotapes, audiotapes,
scribing, field notes and
photographs.
Findings were
disseminated through
seminars, conferences,
narrative
action reflection workshop,
documentations, and writing
up research
Agenda-setting:
Findings contributed to
increased understanding
and awareness of disability
issues for individuals involved
in policy development and
implementation across the
various sectors of government
to improve service delivery
mobilising for an accessible
public transport system
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Table 3 Characteristics of included studies (Continued)
Study name
Study design
Time frame
Background story
Health topic, Target
population, Organiser,
Country
Definition of narrative
and theoretical
framework adopted
Format (verbal, print,
audio, video) and
characteristics of
narratives (plot and
characters)
Characteristics of the
intervention used to
deliver the narrative
Policy outcome assessed
(agenda-setting, policy
formulation, policy adoption,
policy implementation, policy
evaluation)
Country: South Africa
MacGregor and Mills,
2011 [52]
Case study
In 2003, as part of a
campaign to secure
treatment for HIV drugs
for all, a group of women
involved with the
Treatment Action
Campaign and Medicines
Sans Frontières participated
in an initiative to maptheir
bodies as affected by HIV
Health topic: Right to HIV
treatment
Target population:
Government
Organiser: Medicines Sans
Frontières
Country: South Africa
Not reported Format: Body mapping
(an innovative narrative
and art therapy) through
which women tell how
their lives have been
transformed by
antiretroviral treatment
Characteristics of narratives:
Not reported
A book, Long Life: Positive
HIV Stories, containing the
womens body maps and
narratives was published
and used as a political
tool to add the voices
of ordinary people to the
campaign to lobby for
treatment for all
Policy implementation:
Roll out of universal access
to antiretroviral treatment
drug in the public sector
MacKenzie et al., 2008 [54]
Case study using frame
analysis
In 2007, Clare Oliver was
dying from melanoma at
the age of 26; in the last
months of her life, she
campaigned strongly
against the use of tanning
beds and called for a ban
Health topic: Solarium tanning
Target population: Government,
media and the general public
Organiser: Clare Oliver
Country: Australia
Not reported Format: First person accounts,
television and print media
coverage of the campaign
Characteristics of narratives:
Not reported
The policy changes were
thought to result from the
combination of powerful
personal stories of people
whose melanoma was
associated with use of
tanning beds, media
advocacy, political
representation and
lobbying, and epidemiological
evidence
Policy adoption:
regulation of the solarium
industry (e.g. banning
access to tanning beds for
those younger than 18 years)
Marcus, 2010 [53]
Case study
A cancer survivor who
became a patient advocate
and navigator shared his
experiences with TV writers;
the storyline, entitled You
Dont Cut into Cancer,
first aired on April 21, 2005
Health topic: Patient navigators
for chronic diseases
Target population: Congress
Organiser: Representatives of
the National Cancer Institute
at the National Institutes of
Health and writers from the
NBC medical drama ER,as
well as Hollywood, Health
and Society advisory board
Country: United States of
America
Not reported Format: Primetime network
TV storyline addressing
cancer patient navigators
Characteristics of narratives:
Storyline featured an elderly
African-American woman
who avoided surgery for a
lump in her breast because
she believed that cutting
into cancer would cause it
to spread. A physician
arranges for a visit with an
African-American breast
cancer survivor who is
also a patient navigator.
The survivor shares her
experience with Mrs
Graham and offers to
help. As the episode ends,
Mrs Graham appears willing
to receive treatment
Clips of the episode were
shown to raise awareness
of patient navigators in a
Congressional Committee
meeting.
Congressional staffers
report that the episode
provided a tangible
example of how patient
navigator programmes
would work
Policy adoption:
The storyline contributed
to critical policy discussion
that led to passage of
United States law HR 1812,
the Patient Navigator
Outreach and Chronic
Disease Prevention Act
of 2005
Fadlallah et al. Health Research Policy and Systems (2019) 17:26 Page 9 of 22
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Table 3 Characteristics of included studies (Continued)
Study name
Study design
Time frame
Background story
Health topic, Target
population, Organiser,
Country
Definition of narrative
and theoretical
framework adopted
Format (verbal, print,
audio, video) and
characteristics of
narratives (plot and
characters)
Characteristics of the
intervention used to
deliver the narrative
Policy outcome assessed
(agenda-setting, policy
formulation, policy adoption,
policy implementation, policy
evaluation)
Neuhausen, 2013 [48]
Case study
Grady, the fifth-largest
public hospital in and
the largest provider of
indigent care in Georgia,
was caught in a perfect
stormof economic
troubles. Medical students
led a year-long campaign
in 2007 to fight for a
vital safety-net hospital
in Georgia
Health topic: Safety-net
hospital Gradyfor poor
and uninsured residents
Target population: Legislators
and governors
Organiser: Students and
resident physicians under
the lead of Health Students
Taking Action Together
(HealthSTAT)
Country: Georgia
Not reported Format: Scripted narrative
(stories from Grady patients
were collected to create
patient story cards with
photos of patients on the
front and quotes on the back)
Characteristics of narratives: In
one card, the front included a
middle-aged African American
man looking back with tired
eyes. The back of his card read:
When my health was failing, I
lost my job and was left without
insurance. I turned to Grady
when my heart failure worsened
to the point where I had to be
hospitalised. Since then, I have
gotten back on track, working
with my doctors and nurses
at Grady to make sure that I
keep myself healthy and out
of the hospital. I want to give
what I can to help this
hospital because I know there
are many more people out
there just like me who cannot
afford to have Grady close
Stories collected from
Grady patients of the
life-saving care provided
by Grady, were described
as the most powerful
advocacy tool.
Patient stories were
complemented by a range
of activities, including State-
wide campaign to get state
legislature to increase state
funding; writing to governor,
lieutenant governor, or
speaker of the House,
asking them to increase
state support to Grady;
talking one-on-one with
the legislators; inviting
legislators to visit Grady
to gain first-hand
experience; and testifying on
day of Commissioners
vote on Gradys central
role in caring for the
working poor
Policy adoption:
Commissioners voted to
approve the non-profit
conversion which was
critical to Gradys survival.
Georgia General Assembly
approved increases in
Medicaid reimbursement
rates to trauma hospitals
and authorised US$58
million to support
uncompensated care at
state trauma centres
Rosenbaum, 2016 [56]
Case study
In 2013, Amy Reed,
underwent a hysterectomy
with intraoperative
morcellation for
presumptively benign
uterine fibroids. The tumour
turned out to contain
leiomyosarcoma (LMS), a
rare aggressive cancer, and
the procedure resulted in
dissemination of the cancer
Health topic: Use of
morcellators in gynaecologic
surgeries
Target population: Legislators,
government, medical
profession, public
Organiser: Amy Reeds
husband Hooman
Noorchashm, then a
cardiac surgery fellow
Country: United States
of America
Not reported Format: Verbal and print
Characteristics of narratives:
Availability bias exaggerated
the risk of LMS with media
coverage featuring the faces
of women dying of LMS,
ravaged by chemotherapy,
flanked in photos by their
husbands and young
children. Meanwhile, the
benefits of morcellation
are largely invisible and
thus unavailable
Reeds husband launched
a campaign to ban morcellators.
The Wall Street Journal picked
up the story in December 2013.
Subsequently, the Food and
Drug Administration undertook
a review to quantify the risk
of disseminating occult uterine
cancers that cannot be reliably
detected preoperatively. The
resultant safety communication,
was issued in April 2014
Policy implementation:
FDA issued a black-box
warning stating that
morcellation was
contraindicated in
perimenopausal or
postmenopausal women
and in candidates for en
bloc tissue removal.
Many institutions banned
morcellation and some
insurers stopped covering
the procedure or began
requiring prior authorisation.
Author argues that there
may be greater population
benefits and lesser risks
from continuing than from
discontinuing morcellator
use, thus claiming anecdote
can skew risk perception
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Table 3 Characteristics of included studies (Continued)
Study name
Study design
Time frame
Background story
Health topic, Target
population, Organiser,
Country
Definition of narrative
and theoretical
framework adopted
Format (verbal, print,
audio, video) and
characteristics of
narratives (plot and
characters)
Characteristics of the
intervention used to
deliver the narrative
Policy outcome assessed
(agenda-setting, policy
formulation, policy adoption,
policy implementation, policy
evaluation)
Sharf, 2001 [33]
Case study
In 1975, Kushner, a journalist
and cancer survivor, put her
investigative skills to use in
understanding the cancer
that afflicted her.
In 1993, Nelene Fox, a
38-year-old mother was
diagnosed with advanced
breast cancer and was
advised that her only
remaining chance for
survival was an autologous
bone marrow transplant
(ABMT), which her insurance
refused to pay for ($US
140,000) because of
insufficient scientific
evidence to prove its
efficacy;
Senator Tom Harkins
interest in breast cancer
was influenced by the
death of his only two sisters
at a young age from breast
cancer, without ever doing
a mammogram
Health topic: Breast cancer
Target population: Cancer
establishments, legislators,
Congress, public
Organiser: Patients with
breast cancer and
advocates
Country: United States
of America
Personal narratives are powerful,
rhetorical strategies, as well as
humane expressions of suffering and
memorials to loved ones. The riveting
communication of such narratives
enlightens our understanding of what
it means to live with breast cancer
Format: Personal narratives
of patients living with breast
cancer elicited through
conversations, popular
books, newspapers and
magazines, and television
Characteristics of is:
Not reported
Kushner wrote a book,
entitled Breast Cancer:
A Personal History and an
Investigative Report, which
provided a brief account of
her own illness, with a lengthy
analysis and critique of the then
current epidemiological and
clinical approaches to breast
cancer. Her book was excerpted
in newspapers and womens
magazines, and remained in
circulation until the early 1990s.
Foxs brother, a lawyer, sued the
insurance and convinced the jury
to award $89,000 in damages to
her family. Similar lawsuits with
similar results soon followed,
further fuelled by media publicity.
Questions that many physicians
had about the efficacy of ABMT
were compounded by prolonged
difficulty in recruiting enough
subjects for controlled clinical
trials.
Senator Harkin has championed
funding of medical research for
breast cancer over the past
decade, characterising it as
a leading killer
Policy implementation:
Kushners efforts resulted in
a change of standard clinical
procedure to the two-step
biopsy and treatment decision.
Foxs story succeeded in
forcing widespread insurance
reimbursement for ABMT
even though there was little
or no data to support this
choice, further discouraging
patients from enrolling in
clinical trials. Thus, conclusions
about the lack of efficacy of
the treatment for patients
with breast cancer were
delayed until 1999.
Senator Harkins legislative
achievements included
dramatically increasing
funding of breast cancer
research and creating
treatment, prevention, and
screening programmes for
lower-income women
Shi, 2014 [49]
Case study
In June 2012, Feng
Jianmei, a 23-year-old
Chinese woman, was
forced to have late-term
abortion by local birth-
control officials
Health topic: Birth control;
Target population: Public,
government
Organiser: Family members
of Feng Jianmei
Country: China
Not reported Format: Graphic photos of
the woman with the aborted
fetus, micro-blogs and online
forums
Characteristics of narratives:
Not reported
Jianmei's story was exposed by
family members and went
viral, provoking public outrage
and widespread condemnation
on social media. Story was
quickly picked up by major
media outlets in China and
subsequently spread overseas.
Provincial and municipal
governments were under
great pressure from the public
Agenda-setting:
The National Population and
Family Planning Commission
announced that it would send
10 inspection teams to 19
provinces to review the policy
enforcement of local family
planning officials
Slaton et al., 2012 [50]
Case study
Timeframe not reported
National family movement
has advocated for
meaningful engagement
of families and youth who
Health topic: Childrens
Mental Health Initiative
Target population: Legislators
Organiser: Childrens mental
health family movement
Not reported Format: First person accounts
of a family leaders involvement
in legislative policy as a result of
her sons mental health
Characteristics of narratives:
Not reported
Strategies that support
effective family leadership
at making macro-level
improvements, such as
using data to increase
impact of personal stories;
asking legislator to make
Policy adoption:
Legislators direct their staff to
call family-run organisations to
better understand how certain
provisions will affect children
with mental health needs and
their families. Parents have
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Table 3 Characteristics of included studies (Continued)
Study name
Study design
Time frame
Background story
Health topic, Target
population, Organiser,
Country
Definition of narrative
and theoretical
framework adopted
Format (verbal, print,
audio, video) and
characteristics of
narratives (plot and
characters)
Characteristics of the
intervention used to
deliver the narrative
Policy outcome assessed
(agenda-setting, policy
formulation, policy adoption,
policy implementation, policy
evaluation)
are the focus population of
the federal Childrens Mental
Health Initiative
Country: United States of
America
a call on behalf of parents
to whatever entity may
have created a barrier to
care for their child;
designing a range of
simple ways for parents
to directly contact
legislators about pending
bills; devising ways to
funnel information from
large numbers of parents
into family-run organisations
public statements; working
with the media; working
with other groups in a
coalition
been invited to see legislation
they have worked on signed
by the governor
Trossman, 1999 [55]
Case study
In January 1999, nurse Karen
Daley got infected with HIV
and hepatitis C as a result of
being stuck bycontaminated
needle while performing her
job as an emergency room
nurse
Health topic: Needle stick
legislation
Target population: Legislators
and nurses
Organiser: Nurse Karen Daley
Country: United States of
America
Not reported Format: Testimony of nurse
Karen Daley, President of
Massachusetts Nurses
Associations, who is now
HIV- and hepatitis C-positive
Characteristics of narratives:
Not reported
On April 6, Nurse Daley
walked into the Massachusetts
State House to present her
testimony and let legislators
who consider the merits of
a proposed needlestick bill
to see first-hand that behind
every injury, there is a real
person. The testimony was
covered by press and she
has appeared on the public
television show Greater
Boston
Policy adoption:
The day after Daley testified,
the Massachusetts health
committee put its support
behind the bill, allowing it to
move forward in the legislative
process. The Massachusetts
Nurse Association helped draft
the language use in the House
Bill 969
Umuhoza, 2013 [45]
Case study
In 2009, Rutgers WPF, a
Dutch NGO working on
sexual and reproductive
health and rights supported
work on these issues in the
global South. A study tour in
the Netherlands for six Youth
Action Movement (YAM) from
Rwanda, Malawi, Mali, Tanzania
and Bangladesh was organised.
YAM Rwandas members decided
that their national action plan
was going to focus on the issue
of safe abortion. Throughout 2010
and 2011, YAM Rwanda took the
challenge to improve the situation
related to abortion in Rwanda
Health topic: Safe abortion
Target population: Ministries,
Parliamentarians, civil society
organisations, public
Organiser: Rwandan Youth
Action Movement
Country: Rwanda
Not reported Format: Booklets with
testimonies of young
women in prison
Characteristics of narratives:
One of the testimonies read:
My name is Anne. I am 20
years oldI have been in
Karubanda prison since
2007 for committing abortion.
I am the 3rd born in the family
and the only girl; I was raised
by my dad after my mum
died when I was still young. I
was in the 5th year of my
secondary education when
a teacher started dating me.
I needed school materials
and since I could not afford
Booklets were distributed
at different government
offices and were also
used by Rwandan Youth
Action Movement members
during strategic and political
follow-up events in 2011.
Booklets were complemented
by a range of activities to
achieve success, including
data on extent of unsafe
abortion; organised debates;
value-clarification exercises;
interviews and a survey;
launching of a petition for
law reform; production of
awareness-raising materials;
media engagement; and meetings
with representatives from
Policy adoption:
Activities played a significant
role in the advocacy process
for amendment of the law,
which was revised when the
penal code came up for
review in June 2012.
Efforts coincided with
important policy events, like
the revision of Rwandas
penal code
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Table 3 Characteristics of included studies (Continued)
Study name
Study design
Time frame
Background story
Health topic, Target
population, Organiser,
Country
Definition of narrative
and theoretical
framework adopted
Format (verbal, print,
audio, video) and
characteristics of
narratives (plot and
characters)
Characteristics of the
intervention used to
deliver the narrative
Policy outcome assessed
(agenda-setting, policy
formulation, policy adoption,
policy implementation, policy
evaluation)
them, I allowed to have
sexual intercourse with this
teacher at that tender age.
With limited knowledge of
contraceptive use, I got
pregnant and had to drop
out of school since its
against regulations. I
decided to have an
abortion. I am supposed
to serve a period of 9 years
of which I have so far
completed 3
government ministries, the
national womens and youth
councils, and parliamentarians
Wilcock et al., 2013 [47]
Case study
Timeframe not reported
To initiate quality
improvements within the
NHS Modernisation Agency
collaborative programmes that
are patient- and carer-focused,
it is critical to first identify their
needs and concerns
Health topic: Quality
improvement in healthcare
Target population: NHS
Modernisation Agency
collaborative programmes
Organiser: CHD Collaborative
and Critical Care Collaborative
Country: United Kingdom
Narrative is described as a story that
tells a sequence of events that are
significant to the narrator and his or
her audience. Every narrative describes
a sequence of events that have
happened
Format: Verbal (narrated)
elicited through Discovery
Interview Process, a technique
for listening to patients and
carers and using their narratives
to improve care
Characteristics of narratives:
Not reported
Patient narratives were
gathered by trained
interviewers and subsequently
analysed by the NHS staff who
provide their care. Stories were
read out at a national meeting
of the Critical Care Programme
and the Coronary Heart Disease
Collaborative at a plenary
session attended by professionals
throughout England
Policy implementation:
Narratives led to patient-
centred changes as part
of a quality improvement
project, e.g. in an East
London hospital, nurses
began to spend time
talking with patients who
were due to be moved,
explaining the reasons
and what the patient might
expect. Improvements were
also made at the pre-
assessment phase of an
elective patient journey,
with introduction of nurses
who visit all preoperative
patients, identifying particular
needs and talking to them
about the critical care
environment
Fadlallah et al. Health Research Policy and Systems (2019) 17:26 Page 13 of 22
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Eight studies targeted policy-makers, legislators and/or
governors only [44,46,48,50,52,53,55,59], one tar-
geted national healthcare organisations only [47], and
nine targeted multiple stakeholders including govern-
ment and the public [33,43,45,49,51,54,5658]. In
one of the studies, the target audience was TV viewers;
however, we only focused on the findings specific to
policy-makers which was relevant to our question [53].
The included studies covered the topics of solarium
tanning (n= 1), HIV/AIDS (n= 1), individuals with dis-
abilities (n= 2), patient navigators for chronic diseases
(n= 1), supervised injecting facilities for drug users (n=1),
abortion (n= 2), Medicaid Optional Coverage for Women
and Infants programme (n= 1), needlestick injuries (n=1),
safety-net hospital for poor and uninsured residents
(n= 1), birth control (n= 1), mental health initiatives
for children (n= 1), cancer (n= 2), use of morcellators in
gynaecologic surgeries (n= 1), approval of mifepristone
for use as treatment for meningioma (n=1), and quality
improvement in healthcare (n= 1). One study focusing on
personal celebrity health narratives examined a range of
diseases, including multiple sclerosis, cancer, Parkinsons
disease, Alzheimers disease, HIV, Hugh Downs, bipolar II
disorder, eating disorder, type 1 diabetes, paralysis, cystic
fibrosis and amyotrophic lateral sclerosis [58].
Four of the included studies provided a definition for
narrative [33,44,47,58] and three described the theoret-
ical framework underpinning the narrative intervention
[44,57,58]. All but four studies used a meta-narrative,
which combined the stories of a large number of people
to convey a thematic, systemic story as opposed to focus-
ing on a single event or individual (i.e. episodic stories).
The narrative information was presented in different
formats, with some studies utilising more than one
format. These formats included television appearances
(n=3) [54,58,59], entertainment education (prime--
time network TV storyline) (n=1) [53], short films, theatre
and plays (n=1) [43], magazines and journal prints (n=2)
[56,58], books (n=2) [33,52], narrative action reflection
workshops (n=1) [57], video materials (n=2) [44,56],
posters and photos (n=3) [44,49,51], booklets with
testimonies (n=1) [45], advocacy summaries of per-
sonal experiences (n=1) [46], story cards with photos
of patients on front and quotes on back (n=1) [48],
micro-blogs and online forums (n=1) [49], and verbal
(narrated) (n=6) [33,47,50,55,58,59].
In seven studies, the narrative information was pre-
sented alone [33,47,51,52,55,58,59], whereas in 11
studies, the narrative was part of a multi-component
intervention leading to the reported change in outcome
[4346,4850,54,56,57]. Components besides narra-
tives included organised debates, values clarification exer-
cises, interviews and surveys in four universities, a petition
for law reform and media involvement [45]; quantitative
data [46]; state-wide campaign, writing to governor,
lieutenant governor, or speaker of the House, talking
one-on-one with the legislators, and inviting legislators
to gain first-hand experience [48]; parental meetings,
working with other groups in a coalition, quantitative
data and media engagement [50]; research and media ap-
pearances [43]; seminars, documentation and conferences
[57]; trials, reports, royal commissions and advocacy ef-
forts [44]; media advocacy, direct political representation
and lobbying and epidemiological evidence [54]; and cam-
paign, media coverage, and review of research [56].
The included studies examined the influence of narra-
tives on the policy outcomes of agenda-setting (n= 5),
policy formulation (n= 1), policy adoption (n= 9), and
policy implementation (n= 4); none looked at policy
evaluation. One of the studies included data from two
countries, and reported impact at different levels of the
policy-making process [43]. None of the studies con-
ducted actual evaluation of effectiveness or provided ex-
plicit evidence for the link between the intervention and
the outcome.
Methodological appraisal
Additional file 3presents the detailed assessment of the
reporting of included case studies according to the stan-
dards by Rodgers et al. [41]. None of the cases studies met
all 13 reporting standards. The median score was 4 (out of
a maximum score of 13). Only four studies met more than
half of the reporting standards [43,44,47,54].
Influence on policy outcomes
We present below the findings stratified according to the
stages heuristic framework of the public policy process.
Agenda-setting
One participatory action research [57], one documentary
analysis [58] and three case studies [43,49,51] exam-
ined the influence of narrative on agenda-setting.
Lorenzo [57] reported that a series of narrative action
reflection workshops enabled storytelling and action
learning by women with disability in Cape Town. These
women were able to mobilise collectively for change re-
garding an accessible public transport system as a strat-
egy for social inclusion. The findings have contributed
to increasing the understanding and awareness of dis-
ability issues for people involved in policy development
and implementation across the various sectors of govern-
ment to improve service delivery mobilizing for an access-
ible public transport system so that they had equal
opportunities to participation in social and economic de-
velopment[57].
Johnson et al. [43] examined the contribution of inclu-
sive qualitative research studies (via life stories) to
policy-making related to people with disabilitiesright to
Fadlallah et al. Health Research Policy and Systems (2019) 17:26 Page 14 of 22
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relationships and to a sexual life in Ireland. As a result
of research, drama and media appearances, the issue of
the prohibition of penetrative sexual activity with a per-
son with intellectual disabilities under Irish law was
brought to public attention. In March 2011, two repre-
sentatives from the research group were invited to consul-
tations with the governments legislative advisory body,
the Law Reform Commission, with regard to reviewing
the 1993 Act –“The Act in the Republic has not yet been
changed, but there is now a significant voice from people
with intellectual disabilities informing discussion of how
this might happen[43].
Beck et al. [58] conducted a documentary analysis of
newspaper articles, letters to the editors of magazines
and newspapers, televised interviews, and online data-
banks to identify celebrities, including athletes, actors,
musicians and politicians, who have publicly shared per-
sonal narratives regarding their health situation (or that
of a loved one). The authors found that the key func-
tions that celebrity health narratives performed were
education, inspiration and activism. Celebrity narratives
have contributed to raising money and awareness and
have also led to doubling funding for research at the Na-
tional Institutes of Health for certain diseases.
Krueger [51] conducted a case study of how cancer-re-
lated organisations were integrating, beginning in the late
1940s, the voices, images and stories of young sufferers into
their annual campaigns as tools for education, awareness
and inspiration. The author remarked: Poster children were
strategically used throughout the mid-to-late twentieth cen-
tury to advance principles of early cancer detection and
prompt treatment; to illustrate or, at times, exaggerate
promising biomedical advances in the field; and to elicit
emotional responses and donations from a wide audience
during the escalation of the war against cancer[51].
Shi [49] described the story of Feng Jianmei, a 23-year-
old Chinese woman who was forced to have late-term
abortion by local birth-control officials. Her story was
exposed by family members through graphic photos,
micro-blogs and online forums, provoking public out-
rage and widespread condemnation on social media
sites. In response to tremendous pressure from the pub-
lic, the National Population and Family Planning Com-
mission announced that it would send 10 inspection
teams to 19 provinces to review the policy enforcement
of local family planning officials.
Policy formulation
Johnson et al. (discussed above) [43], explored the con-
tribution of inclusive qualitative research studies to
change in policy and legislation related to people with
disabilitiesright to relationships and to a sexual life, also
in Australia. Twenty-five people with intellectual disabil-
ities told their life stories and talked about sexuality and
relationships. Three short films of the stories were sub-
sequently produced and used to lobby government for a
change to the existing policy. The new policy draft
clearly set out rights and responsibilities for people with
intellectual disabilities and service providers about rela-
tionships and sexuality.
Policy adoption
Eight case studies [4446,48,50,5355] and one bio-
graphical study [59] examined the influence of narrative
on policy adoption.
MacKenzie et al. [54] reviewed television and print
media coverage of the campaign to regulate solaria initi-
ated by Clare Oliver before her death from melanoma in
late 2007. A frame analysis was conducted of all direct
and attributed statements about the causes of, and re-
sponsibility for, Olivers melanoma, and about the legacy
of her campaign. Olivers story was influential in secur-
ing regulations across all states and territories to ban ac-
cess to tanning beds for those younger than 18 years.
Marcus et al. [53] assessed the educational and behav-
ioural impact of an ER (NBC drama) storyline that ad-
dressed cancer patient navigators on primetime TV viewers.
Clips of the TV episode were used by Congressional staffers
to raise awareness of patient navigators in a Congressional
Committee meeting. Congressional staffers reported that
the episode provided a tangible example of how patient
navigator programmes would work and contributed to
critical policy discussion that led to passage of US law
HR 1812, the Patient Navigator Outreach and Chronic
Disease Prevention Act of 2005that provides funds to
model programmes that would help patients to access
healthcare services.
Fitzgerald [44] retraced the policy narratives related to
the introduction of supervised injecting facilities (SIFs) in
Australia in documentary materials. Narrative was used as
an advocacy tool to inform government of the impact of
street injecting on a local community. The narrative inter-
vention was one component of a multi-faceted interven-
tion, including trials, reports and advocacy to promote SIF
in two different parts of Australia (Sydney and Melbourne).
In Sydney, SIF policy development was framed as a re-
sponse to police corruption (i.e. police were viewed as vil-
lains), whereas in Melbourne, the policy narratives focused
on health and welfare of drug users (with the police, here,
viewed as heroes). These two framings created a different
pathway for policy development. In Sydney, 22 months
after the Drug Summit Legislative Response Act 1999 was
passed for the trial of the SIF, the service opened in May
2001. In Melbourne, the bill failed to pass through both
Houses of the Victorian Parliament.
Umuhoza et al. [45] reflected on the use of personal
stories as advocacy tools to mobilise action for law reform.
Narrative was part of a multicomponent intervention
Fadlallah et al. Health Research Policy and Systems (2019) 17:26 Page 15 of 22
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initiated by Rwandan Youth Action Movement to put the
new abortion law into effect in 2012. The use of testi-
monies and stories of young people gave a faceto the
issue of unsafe abortion. These activities played a signifi-
cant role in the advocacy process for amendment of the
[abortion] law which was revised when the penal code
came up for review in June 2012[45]. These efforts also
coincided with important policy events, which opened a
window of opportunity for action.
Leith and Phillips [46] presented three short case stud-
ies illustrating how qualitative techniques and consumer
narratives can serve as advocacy tools to inform public pol-
icy. We focused on the case study on Optional Coverage
for Women and Infants Medicaid programme as it is
health related. To demonstrate to state legislators the need
for continuing the programme, the state agency in a
south-eastern state provided state legislators with advocacy
summaries from their constituent areas. Hotline informa-
tion was used to create thousands of these advocacy sum-
maries consisting of brief narratives of three to eight
sentences that gave a qualitative description of the personal
experiences of callers with the system. The narratives were
also supplemented by data regarding the success of the
programme. Based on these narrative accounts, legislators
were able to see first hand the impossible situations families
in poverty were experiencing, and the Optional Coverage
for Women and Infants program was ultimately spared
from proposed legislative budget cuts[46].
Neuhausen [48] reported how hundreds of students
and resident physicians fought for the survival of Grady,
the fifth-largest public hospital and the largest provider
of indigent care in Georgia. Narrative was one component
of a national campaign and advocacy efforts to get state le-
gislaturetoapprovethenon-profitconversionofGrady
and to increase state funding. Stories from Grady patients
describing the life-saving care provided by Grady were col-
lected to create story cards, with photos of patients on the
front and quotes on the back. These stories were described
as the most powerful advocacy tool. The commissioners
voted to approve the non-profit conversion which was crit-
ical to Gradys survival. The Georgia General Assembly also
approved increases in Medicaid reimbursement rates to
trauma hospitals and authorized $58 million to support un-
compensated care at state trauma centers[48].
Slaton et al. [50] described the stories of four family-
led organisations and the impact of their advocacy ef-
forts on systems of care for mental health. We specific-
ally focused on one family leaders story of involvement
in legislative policy. Narratives of parents of children
with mental health problems was one component of a
multifaceted approach that also included networking
with other families and organisations, speaking with legis-
lators, engaging in advocacy and involving the media. Ac-
cording to the family leader involved in that case study,
legislators now direct their staff to call the family-led or-
ganisation to better understand how certain provisions
will affect children with mental health needs and their
families. Additionally, parents have been invited to see
legislation they have worked on being signed by the
governor [50].
Trossman [55] described how the President of Massa-
chusetts Nurses Associations used her personal story to
push for needlestick legislation in Massachusetts. Fol-
lowing her infection with HIV and hepatitis C as a result
of being pricked by a contaminated needle, Nurse Daley
presented her testimony at the Massachusetts State
House and let legislators who consider the merits of
a proposed needlestick bill to see that there is a real
person behind every injury. The day after she testi-
fied, the Massachusetts health committee put its sup-
port behind the bill, allowing it to move forward in
the legislative process.
Lander [59] described how her campaign to amend
the legal status of the drug mifepristone in Australia was
triggered in 2005 when she was diagnosed with meningi-
oma. Although the drug could halt the growth of tu-
mours, it was unapproved in Australia because of its
potential use as an abortifacient. The campaign involved
email exchanges and ongoing contact with a Senator as
well as participation in broadcasts to help raise aware-
ness of the drug. In 2006, parliament successfully voted
to repeal ministerial responsibility for approval of the
drug mifepristone.
Policy implementation
Four case studies examined the role of narratives on pol-
icy implementation [33,47,52,56].
MacGregor and Mills [52] described how, in an at-
tempt to enhance access to antiretroviral drugs in South
Africa in 2003, a group of women involved with the
Treatment Action Campaign and Medicines Sans Fron-
tières participated in an initiative to maptheir bodies as
affected by HIV. Through the body maps and personal
accounts published alongside the maps, women told
how their lives have been transformed by antiretroviral
treatment. The womens body maps and narratives were
published in a book, Long Life, which was subsequently
used as a political tool to add the voicesof ordinary
people to the campaign. These efforts contributed to the
roll out of universal access to antiretroviral treatment
drug in the public sector.
Wilcock et al. [47] reflected on the use of patient stor-
ies to inspire quality improvement within the NHS Mod-
ernisation Agency collaborative programmes. Patients
narratives were gathered by trained interviewers in one-to-
one semi-structured qualitative interviews and analysed by
the NHS staff who provide their care. The stories were read
out at a national meeting of the Critical Care Programme
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and the Coronary Heart Disease Collaborative. The authors
presented two case studies illustrating how these narratives
led to patient-centred changes as part of quality improve-
ment projects within the NHS Modernisation Agency col-
laborative programmes in England.
Sharf [33] provided a historical view of how personal
narratives of women living with breast cancer affected
health policy. The author reported that personal breast
cancer stories have inspired efforts by citizen advocates
and legislators to provide better care and more resources
for the disease (for example, changing of standard clin-
ical procedure and creating treatment, prevention and
screening programmes for lower-income women). How-
ever, the author also shed light on a case where narrative
of breast cancer led to undesirable outcomes; in 1993,
after being diagnosed with advanced breast cancer,
Nelene Fox was advised by her doctors that her only
remaining chance for survival was an autologous bone
marrow transplant. Her insurance refused to pay for the
procedure because the treatment was classified as ex-
perimental due to insufficient scientific evidence that it
extended a patients life. Foxs brother, a lawyer, sued the
insurance and convinced the jury to award $89,000 in
damages to her family. Media publicity about the Fox case
succeeded in forcing widespread insurance reimburse-
ment, further discouraging patients from enrolling in clin-
ical trials. Conclusions about the efficacy of the treatment
were delayed until 1999 when the National Cancer Insti-
tute announced that autologous bone marrow transplant
does not benefit people with breast cancer.
Rosenbaum [56] reflected on the case of 40-year-old
Amy Reed who underwent a hysterectomy with intraop-
erative morcellation for presumptively benign uterine fi-
broids (which unknowingly contained leiomyosarcoma),
thus causing it to disperse. Following her death, Reeds
husband launched a campaign to ban morcellators which
was picked up by The Wall Street Journal. Extensive
media coverage featuring the faces of women dying of
leiomyosarcoma exaggerated the risk of leiomyosarcoma,
while the benefits of morcellation remained largely invis-
ible and, thus, unavailable. Subsequently, the Food and
Drug Administration undertook a review to quantify the
risk of disseminating occult uterine cancers that cannot
be reliably detected preoperatively, 6 months later issu-
ing a black-box warning stating that morcellation was
contraindicated in perimenopausal or postmenopausal
women and in candidates for en bloc tissue removal.
Many institutions banned morcellation and some insurers
stopped covering the procedure or began requiring prior
authorisation. The author explained that medical products
are associated with two types of risk, those caused by using
the products and those caused by preventing their use; the
morcellation controversy is an example of the latter case
given that there may be greater population benefits and
lesser risks from continuing than from discontinuing morcel-
lator use[56]. However, disproportionate focus on harms
caused by use rather than non-use skewed risk perception.
Policy evaluation
We found no studies examining the role of narratives in
policy evaluation.
Knowledge gaps
Our systematic review highlighted key knowledge gaps
concerning the use of narrative interventions in health
policy-making. We present, in Table 4, the knowledge
gaps relevant to the study design, interventions, setting,
population and outcomes in the area of using a narrative
to impact health policy-making [42].
Discussion
Summary and interpretation of findings
This systematic review identified 18 eligible studies
examining the effects of narratives on the different
stages of the health policy-making process, except for
Table 4 Identified knowledge gaps
Domain Identified knowledge gaps
Study design Lack of experimental or interventional
studies on the impact of narratives on
health policy-making in real-life settings
Lack of qualitative studies to better
understand the knowledge, beliefs and
attitudes of policy-makers towards narratives
Intervention Limited evidence on the effects of narratives
(as standalone) independent of other interventions
(e.g. the use of social media)
Limited description of the narrative intervention
(including frequency and duration of exposure,
content of narrative (e.g. plot and characters)
and perceived credibility of speaker of message)
Lack of evidence comparing different narrative
formats (e.g. verbal print, audio, video) and
perspectives (first- versus third-person narrative)
Limited description of the framework or theory
guiding intervention development
Variations in definitions and operationalisation
of narrative information
Study setting Limited evidence on the effects of narratives on
health policy-making across cultural settings and
countries
Limited evidence from low-income countries
Lack of evidence from the Eastern Mediterranean
Region, Region of the Americas and Western
Pacific Region
Population Lack of evidence on the effect of moderators,
such as policy-makerscharacteristics
Outcomes Limited evidence on the impact on policy stages
(in general)
Lack of evidence evaluating the impact on policy
evaluation stage
No valid measurement of the impact on the
outcomes of interest (e.g. no actual evaluation or
assessment based on perceptions of respondents)
Fadlallah et al. Health Research Policy and Systems (2019) 17:26 Page 17 of 22
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the policy evaluation stage. The vast majority of in-
cluded articles describe case studies.
The existing evidence base precludes any robust infer-
ences about the impact of narrative interventions on
health policy-making. Nonetheless, the findings suggest
that narratives may have a positive influence when used
as inspiration and empowerment tools to stimulate pol-
icy inquiries; as educational and awareness tools to initi-
ate policy discussions (and gain public support leading
to policy prioritisation); and as advocacy and lobbying
tools to formulate, adopt or implement policy.
However, there is also evidence of undesirable effects
of using narratives [33,51,56]. In one case study, narra-
tive use led to widespread insurance reimbursement of a
therapy for breast cancer that was later proven to be in-
effective [33]. Another case study described how the use
of narrative inappropriately exaggerated the perceived
risk of a procedure, which led to limiting its use and pre-
venting a large number of patients from its benefits [56].
A third case study described how optimistic cureor
hopestories of children with cancer were selectively used
to raise money for cancer research that ignored the nega-
tive realities such as limited gains made in certain paediat-
ric cancers, the high costs of treatment, and the high
prevalence of mental and physical disabilities caused by
experimental chemotherapy protocols [51].
The majority of included studies did not provide informa-
tion on the definition of narratives, the theoretical frame-
work underlying the narrative intervention or the possible
predictors of the success of narrative-based interventions.
Only one study explicitly discussed how the framing of the
attributes of narratives (i.e. sequenced events, characters,
time, location, etc.) influenced policy-making differentially
in two different parts of Australia (Sydney and Melbourne)
[44]. Thus, uncertainties remain about how to construct
and present narrative information.
Having said this, we highlight two emerging patterns
that might inform the optimal use of narratives. First, all
but four studies used a meta-narrative that combined
the stories of a large number of people to convey a the-
matic, systemic story as opposed to focusing on a single
event or individual (i.e. episodic stories). Second, the im-
portance of establishing a relationship with media out-
lets and maximising opportunities to disseminate the
narrative information was emphasised in several studies.
Indeed, six of the included studies highlighted the in-
volvement of media as an important catalyst for policy
change [43,45,49,50,54,56]. In four studies, the narrative
was picked up by media [43,45,49,56] whereas, in two
studies, active effort was made to engage the media and
maximise the reach of the narrative information [50,54].
Unfortunately, there is also a lack of reliable evidence
on the use of media interventions to influence health
policy-making [60].
Strengths and limitations
To our knowledge, this is the first systematic review
examining the effects of narrative-based interventions
on the health policy-making process. Strengths of our
methodology include the pre-publication of a protocol, a
rigorous and transparent review process, and adherence
to standard methods for reporting systematic reviews
[61,62]. In addition, we searched multiple databases and
included both published and the grey literature.
A major challenge in conducting this review was how to
best conceptualise and categorise narratives given the ab-
sence of clear definition and operationalisation of narrative
information. This made it difficult to decide on the eligibil-
ity of some of the studies and to abstract data. This is why
we relied on a consensus approach to screening and data
abstraction, and iteratively revised our conceptualisation of
narrative. Although we did search resources that include
grey literature (e.g. Google Scholar and the WHO Global
Health Library and Communication and Mass Media
Complete), we could have searched additional resources
such as websites of NGOs, advocacy groups and donors.
Further, while some might criticise our use of stages heur-
istic framework, considered by some scholars to assume
linearity of the policy-making process, we opted to use this
framework as it is considered one of the most prominent
public policy frameworks. More importantly, it did facili-
tate synthesis of findings and provide a simplified and use-
ful way to view the entire policy process [37,38].
Knowledge gaps
A major gap relates to the poor methodological rigor of
the included studies. All included studies lacked actual
evaluation of effectiveness or explicit evidence for the link
between the intervention and the outcome. Additionally,
in the majority of the included studies, the narrative com-
ponent was part of a multicomponent intervention, and
thus the evidence associated with the narrative may be in-
direct or confounded by other components of the inter-
vention [34]. The aforementioned limitations made it
difficult to make any inferences on effectiveness of narra-
tive interventions in the health policy-making process.
Moreover, the very limited description of the narrative
interventions was challenging, particularly given that
they qualify as complex interventions [63,64]. Important
aspects of these interventions include frequency and
duration of exposure to a narrative, content of a narra-
tive (for example, plot, characters, and moral of story)
and perceived credibility of the speaker or message.
These aspects are important to understand the specific
narrative intervention that was tested, what component
of the intervention was effective, and the superiority of
one format over another.
Additionally, the majority of included studies failed to
provide information about what framework or theory
Fadlallah et al. Health Research Policy and Systems (2019) 17:26 Page 18 of 22
Content courtesy of Springer Nature, terms of use apply. Rights reserved.
guided intervention development and outcome measure-
ment. Several theories of narrative persuasion have been
identified in the literature [15,17,18]. Thus, without
such information, it would be difficult to understand the
mechanism by which narrative interventions persuade
health policy-makers and lead to change. Moreover, we
could not determine the effect of moderators, such as
the policy-makerscharacteristics on the effectiveness of
the narratives.
While beyond the scope of this systematic review,
we have identified studies assessing message-framing
involving hypothetical scenarios on the attitudes, be-
liefs and intentions of health policy-makers and legis-
lators [6568]. These warrant further exploration to
complementtheevidencebaseontheuseofnarra-
tives in health policy-making in real settings.
Comparison to other systematic reviews
While we did not identify any other systematic review of
narratives in the field of health policy-making, we identified
many in the field of clinical decision-making [2,21,69].
Perrier and Ginis found consistent evidence supporting the
efficacy of narratives at changing screening behavior[69],
but mixed evidence supporting an advantage of narratives
over providing statistical information for screening behav-
iour and its determinants. Winterbottom et al. [2]found
limited evidence suggesting that narratives affected an indi-
viduals medical decisions, but it was unclear why narratives
affected the decision-making process or whether they
facilitated or biased decision-making. Bekker et al. [21]con-
cluded that there is insufficient evidence that adding
personal stories to patient decision aids enhances their
effectiveness to support people to make informed decisions.
Implications for research
Despite the increased interest in narratives [6,23,24,70],
the evidence base on their impact on health policy-making
is of very low certainty. This systematic review highlights
the challenges of assessing the impact of narrative inter-
ventions on health policy-making given the complex na-
ture of these interventions, the difficulties in using
experimental methods, and the multiple factors influ-
encing the policy-making process [34,64,71]. There-
fore, more rigorous primary research is needed to
gain a better understanding of narrative interventions
beyond whether or not they are effective to why and
under what circumstances.
Given that narratives qualify as complex interventions,
a particular focus should be on conducting realist evalu-
ation studies. Unlike traditional impact evaluation that
establishes whether change in outcomes can be directly
attributed to an intervention, realist evaluation focuses
on the processes and contexts of implementation that
yield impact [72]. Thus, by examining what works, for
whom and why, insights are gained about the interactions
between interventions, implementers and health systems
that make interventions more or less successful [73,74].
This is critical to inform the design of context-specific
strategies and understand how the influence of narrative
information can differ across various health systems and
socioeconomic realities. Additionally, qualitative studies
can help explore the knowledge, beliefs and attitudes of
policy-makers towards narrative information, including
their role in the policy-making process.
In addition, researchers are encouraged to promote
better reporting of studies in this field, taking into ac-
count guidelines for reporting of complex interventions
when describing the narrative interventions [75,76]. Im-
portantly, experts in the field should establish clear def-
inition and operationalisation of narratives to allow
better research and communication on the topic.
Funding agencies have an important role in advancing
knowledge and un-tapping the potential for using narra-
tive to influence health policy-making by supporting
studies that address the aforementioned knowledge gaps.
This would also align with global calls for more effective
and innovative approaches to bridge the gap between re-
search and policy-making [7780].
Implications for policy
Our findings suggest that, while narratives may have a
positive influence on health policy change, they may some-
times lead to undesirable outcomes. Findings also allude
to potential pitfalls and ethical concerns that should be
taken into consideration when using narratives. First, be-
cause of the selective nature of narratives, narrators may
omit details of a story or exaggerate it, so the story may
not be representative of the larger reality (for example, the
case of childhood cancer where optimistic cureor hope
stories were selectively used that ignored the negative real-
ities). Second, the reliance on narratives without scientific
evidence may lead policy-makers to adopt policies that
may be ineffective or even harmful or waste resources (for
example, the case of reimbursing a therapy for breast can-
cer that was later proven to be ineffective). Third, narra-
tives may produce biased results based on the views of one
or a select number of individuals (for example, the case of
discontinuing morcellator use). Because of the affective na-
ture of narratives, policy-makers may give higher priority
to diseases with more tragic stories such as cancer and
HIV at the expense of other diseases with a similar or
higher burden such as cardiovascular diseases [33,58].
These limitations and potential pitfalls do not mean
that there should be no place for narratives in informing
health policy-making. However, it does mean that narra-
tives need to be held to standards of validity [6,81,82]. For
instance, Hyman [83] insists that those using narratives
provide persuasive evidence of typicality and completeness
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before assigning any weight to their stories. Sharf [33] calls
for effectively combining the emotional pathos of stories
with rhetorical proof.
In light of the above, we suggest using narratives that
are rooted in evidence to influence health policy-making.
Those designing or using narrative information need to
consider all the above discussed challenges and potential
pitfalls. This would be best achieved by building strong
and effective partnerships between evidence expertsand
those involved in advocacy. Additionally, narratives could
be used to support policies that are based on widely
agreed on principles, such as those of human rights and
medical ethics like access to basic health services and
non-discriminatory health policies.
Conclusion
Despite the increased interest in narratives, the existing
evidence base precludes any robust inferences about the
impact of narrative interventions on health policy-making.
Rigorous research supporting impact on health policy-
making is still needed.
Additional files
Additional file 1: Search strategy. (DOCX 21 kb)
Additional file 2: Excluded studies and reasons for exclusion. (PDF 767 kb)
Additional file 3: Assessment of the reporting of included case studies.
(PDF 338 kb)
Acknowledgements
We would like to thank Ms Aida Farha for her help in validating the search
strategy.
Funding
This systematic review was funded by the Alliance for Health Policy and
Systems Research, WHO, Geneva. The funding body had no role in the
design of the study, collection, analysis and interpretation of data, and in
writing the manuscript.
Availability of data and materials
All relevant data are within the paper and its additional files.
Authorscontributions
EAA, FJ and RF conceived the study. EA, FJ, RF and EL contributed to the
study design. RF and EAA designed and ran the search strategy. RF, MN, NH
and KA screened the articles for eligibility. RF, MN, NH and KA abstracted
data from eligible studies. RF and MN assessed methodological quality of
included studies. RF, EA and FE contributed to the analysis and interpretation
of results. RF, EA, FE and EL contributed to writing up of the manuscript. All
authors read and approved the final manuscript.
Ethics approval and consent to participate
Not applicable.
Consent for publication
Not applicable.
Competing interests
The authors declare that they have no competing interests.
PublishersNote
Springer Nature remains neutral with regard to jurisdictional claims in
published maps and institutional affiliations.
Author details
1
Center for Systematic Review for Health Policy and Systems Research,
American University of Beirut, Beirut, Lebanon.
2
Department of Health
Management and Policy, Faculty of Health Sciences, American University of
Beirut, Beirut, Lebanon.
3
Alliance for Health Policy and Systems Research,
World Health Organization, Geneva, Switzerland.
4
Department of Internal
Medicine, American University of Beirut, Beirut, Lebanon.
Received: 8 August 2018 Accepted: 6 February 2019
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... Tip 11 -Consider documenting and sharing stories of IPECP Narratives and stories may have a positive influence when used as an inspiration or 'empowerment' tool to stimulate policy making and advocacy campaigns in the health sector (Fadlallah et al, 2019). Policies enable implementation and sustainability of IPECP principles. ...
... Commonly, evidence extracted from empirical research is used to frame policies in health since stories are perceived to possess low rigour, and reliability. However, literature is increasingly supportive of the role of narratives for public policy (Fadlallah et al, 2019;Schlaufer, 2018). In fact, there is already a toolkit created by Jankowski and Baker (2019) on how to build a narrative via evidence-based storytelling to aid policy making. ...
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Despite a growing body of research into interprofessional education and collaborative practice (IPECP), practical strategies and initiatives are required to assist healthcare workers with implementation. Practical strategies and tips outlined in this paper can support healthcare teams to incorporate IPECP into day-today workplace practices. Beyond IPECP engagement, the proposed tips will assist with refining current workplace practices and processes to make them more collaborative, intentional, and streamlined at the point of care. Bearing in mind that there is no 'one size fits all' approach to IPECP, these tips have been developed to suit a variety of contexts and are able to be adapted and contextualised by healthcare workers and teams. These 12 tips would not only assist with the implementation of new ideas related to IPECP, but also influence sustainability considerations of these initiatives within healthcare settings.
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Aims and objectives: To explore the lived experience of women who gave birth during the Covid-19 pandemic. Background: Experiencing pregnancy during the Covid-19 pandemic exacerbates the risk of the onset of psychological problems. Design: A descriptive, single-center, qualitative study METHODS: The enrollment for data collection included childbearing mothers aged 18 years and over between November 2021 and April 2022. The researchers invited them to write about their personal experiences during the isolation period of the first pandemic wave. The descriptive phenomenological analysis of the data was carried out using the method described by Mortari. Results: A total of 50 mothers were recruited, of whom 28 were primiparous (56.0%) and 22 multiparous (44.0%). From the analysis of the interviews, five main themes emerged that enclose the experience of both primiparous and multiparous mothers: "The negative feeling: between loneliness, sadness and fear"; "The comfort of being cared for: between humanity and competence"; "Family proximity: between comfort and stress"; "Symbiotic intimacy: bonding; Managing physical pain and consciousness of being resilient women". Conclusions: The study showed that the discomfort associated with the absence of family support in the phase of labor and childbirth was compensated by the professionalism of the health staff and allowed new mothers to experience moments of great intimacy with the child. Implications for nursing management: Such data could help create recommendations based on the assisted person's experiences to ensure that care is increasingly attentive and tailored to the needs of mothers and thus, of children.
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Introduction: The main goals of this study were to describe, in an integrated and multidimensional way, the conditions related to the quality of care in radiology departments from Algarve (Portugal), to assess the perspective of radiographers on the use of scientific evidence in clinical practice and to validate a model that characterizes the conditions for continuous improvement. Methods: A cross sectional study was performed in four radiology departments from public and private healthcare facilities from Algarve region (Portugal). A paper-based survey was sent to all radiographers to assess the quality systems implemented in their radiology departments and their perspective on the use of scientific evidence in clinical practice. Results: In total, 62 radiographers (61.4%) completed the survey. The quality dimensions that obtained the highest degree of compliance were the existence of quality assurance and improvement activities (43.0%), existence of standards in clinical practice of radiographers (42.7%) and the existence of special provisions (37.6%). The quality dimension related to patient's involvement was the one with the lowest level of compliance. Moreover, from the radiographers perspective, positive responses were obtained related to evidence-based actions (83.0%), sources of evidence (76.0%) and the significance of research activities (74.0%). Conclusion: These findings suggest that a new framework based on four factors (Support for Information; Organizational Capability to Technical Quality of Care; Patient Involvement and Evidence-Based Radiology), should be considered in the establishment of strategic policies that better define the provision of diagnostic procedures and professional practices in radiology departments from Algarve region, based on quality improvement systems and better patient safety. Implications for practice: There is a need to include patients in the decision-making process, to involve radiographers in quality assurance and improvement activities and to implement quality monitoring mechanisms within radiology departments under study.
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The primary objective of this paper is the comparison and describe features of health policies across the selected countries viz, Argentina, Australia, Finland, Kenya, India, South Korea, United Kingdom (U.K), United States (U.S). The second objective of the paper is to understand the political commitment in each country by comparing the allocation of adequate resources toward health. To study health policies, eight countries are selected from each geographical region and to determine political commitment toward health policy, three related variables are analyzed. Databases of the multilateral organization including the World Health Organization (WHO) are searched for the latest data. Out of the eight countries studied, only India and Kenya have a National Health Policy. The rest of the countries have medical care policies or health insurance policies or national law to lay down the vision for the health sector. The data indicate that countries which fall in the higher income bracket spend more on health. However, the spending data or the lack of it indicates that there is perhaps no focus on primary care, nutrition, and sanitation, among the prominent drivers of health outcomes. Many countries continue to struggle, to maintain continuity in the broad direction of the health policy. The realm of health process formulation is a major area which needs further research, evidence, re-orientation, and training for policymakers across countries to ensure structured and evidence-based policy formulation. Once there is a structured health policy process, the health policies may effectively address the ground-level issues and may lead to better health outcomes.
... Stages Heuristic Model [466] 2) Multiple Streams Framework [467] 3) Advocacy Coalition ...
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Background: Despite the presence of robust global public health surveillance mechanisms, the COVID-19 pandemic devastated the world and exposed the weakness of the public healthcare systems. Public health surveillance has improved in recent years as technology evolved to enable the mining of diverse data sources, for example, electronic medical records, social media, to monitor diseases and risk factors. However, the current state of the public health surveillance system depends on traditional (e.g., Canadian Community Health Survey (CCHS), Canadian Health Measures Survey (CHMS)) and modern data sources (e.g., Health insurance registry, Physician billing claims database). While improvement was observed over the past few years, there is still a room for improving the current systems with NextGen data sources (e.g., social media data, Internet of Things data), improved analytical mechanism, reporting, and dissemination of the results to drive improved policymaking at the national and provincial level. With that context, data generated from modern technologies like the Internet of Things (IoT) have demonstrated the potential to bridge the gap and be relevant for public health surveillance. This study explores IoT technologies as potential data sources for public health surveillance and assesses their feasibility with a proof of concept. The objectives of this thesis are to use data from IoT technologies, in this case, a smart thermostat with remote sensors that collect real-time data without additional burden on the users, to measure some of the critical population-level health indicators for Canada and its provinces. Methods: This exploratory research thesis utilizes an innovative data source (ecobee) and cloud-based analytical infrastructure (Microsoft Azure). The research started with a pilot study to assess the feasibility and validity of ecobee smart thermostat-generated movement sensor data to calculate population-level indicators for physical activity, sedentary behaviour, and sleep parameters for Canada. In the pilot study, eight participants gathered step counts using a commercially available Fitbit wearable as well as sensor activation data from ecobee smart thermostats. In the second part of the study, a perspective article analyzes the feasibility and utility of IoT data for public health surveillance. In the third part of this study, data from ecobee smart thermostats from the “Donate your Data” program was used to compare the behavioural changes during the COVID-19 pandemic in four provinces of Canada. In the fourth part of the study, data from the “Donate your Data” program was used in conjunction with Google residential mobility data to assess the impact of the work-from-home policy on micro and macro mobility across four provinces of Canada. The study's final part discusses how IoT data can be utilized to improve policy-level decisions and their impact on daily living, with a focus on situations similar to the COVID-19 pandemic. Results: The Spearman correlation coefficient of the step counts from Fitbit and the number of sensors activated was 0.8 (range 0.78-0.90; n=3292) with statistically significant at P < .001 level. The pilot study shows that ecobee sensors data have the potential to generate the population-level health indicators. The indicators generated from IoT data for Canada, Physical Activity, Sleep, and Sedentary Behaviours (PASS) were consistent with values from the PASS indicators developed by the Public Health Agency of Canada. Following the pilot study, the perspective paper analyzed the possible use of the IoT data from nine critical dimensions: simplicity, flexibility, data quality, acceptability, sensitivity, positive predictive value, representativeness, timeliness, and stability. This paper also described the potential advantages, disadvantages and use cases of IoT data for individual and population-level health indicators. The results from the pilot study and the viewpoint paper show that IoT can become a future data source to complement traditional public health surveillance systems. The third part of the study shows a significant change in behaviour in Canada after the COVID-19 pandemic and work-from-home, stay at home and other policy changes. The sleep habits (average bedtime, wake-up time, sleep duration), average in-house and out-of-the-house duration has been calculated for the four major provinces of Canada (Ontario, Quebec, Alberta, and British Columbia). Compared to pre-pandemic time, the average sleep duration and time spent inside the house has been increased significantly whereas bedtime, and wake-up-time got delayed, and average time spent out-of-the-house decreased significantly during COVID-19 pandemic. The result of the fourth study shows that the in-house mobility (micro-mobility) has been increased after the pandemic related policy changes (e.g., stay-at-home orders, work-from-home policy, emergency declaration). The results were consistent with findings from the Google residential mobility data published by Google. The Pearson correlation coefficient between these datasets was 0.7 (range 0.68-0.8) with statistically significant at P <.001 level. The time-series data analysis for ecobee and google residential mobility data highlights the substantial similarities. The potential strength of IoT data has been demonstrated in the chapter in terms of anomaly detection. Discussion and Conclusion: This research's findings demonstrate that IoT data, in this case, smart thermostats with remote motion sensors, is a viable option to measure population-level health indicators. The impact of the population-level behavioural changes due to the COVID-19 pandemic might be sustained even after policy relaxation and significantly affects physical and mental health. These innovative datasets can strengthen the existing public health surveillance mechanism by providing timely and diverse data to public health officials. These additional data sources can offer surveillance systems with near-real-time health indicators and potentially measure the short- and long-term impact of policy changes.
... 7-10 Low-cost/free BC services have been developed to address these problems. 11-15 A central advocacy strategy to support these services is meaningfully engaging past recipients in storytelling, [16][17][18][19] including providing testimonials to policymakers from underserved community members through community-based participatory research (CBPR). 20-25 In CBPR, community and academic partners work collaboratively to harness existing social capital, develop Abstract Background: Community-based public health advocacy efforts are crucial to sustaining the low-cost/free breast cancer services that support underserved populations. ...
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... In some instances, these encounters resulted in customer complaints, asking customers to leave, or calling 911 in the event of an overdose. Engaging personal narratives (i.e., witnessing overdose) in advocacy efforts among business stakeholders, other community members, and elected officials could serve as a powerful tool of persuasion in the public policy making process [35,36]. ...
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