ArticlePDF Available

Justice: a key consideration in health policy and systems research ethics Analysis Handling editor Seye Abimbola

Authors:

Abstract and Figures

Health policy and systems research (HPSR) is increasingly being funded and conducted worldwide. There are currently no specific guidelines or criteria for the ethical review and conduct of HPSR. Academic debates on HPSR ethics in the scholarly literature can inform the development of guidelines. Yet there is a deficiency of academic bioethics work relating to justice in HPSR. This gap is especially problematic for a field like HPSR, which can entail studies that intervene in ways affecting the social and health system delivery structures of society. In this paper, we call for interpreting the principle of justice in a more expansive way in developing and reviewing HPSR studies (relative to biomedical research). The principle requires advancing health equity and social justice at population or systems levels. Drawing on the rich justice literature from political philosophy and public health ethics, we propose a set of essential justice considerations to uphold this principle. These considerations are relevant for research funders, researchers, research ethics committees, policymakers, community organisations and others who are active in the HPSR field.
Content may be subject to copyright.
1
PrattB, etal. BMJ Global Health 2020;5:e001942. doi:10.1136/bmjgh-2019-001942
Justice: a key consideration in health
policy and systems research ethics
Bridget Pratt ,1 Verina Wild,2 Edwine Barasa ,3 Dorcas Kamuya,3
Lucy Gilson,4,5 Tereza Hendl,2 Sassy Molyneux3,6
Analysis
To cite: PrattB, WildV,
BarasaE, etal. Justice: a
key consideration in health
policy and systems research
ethics. BMJ Global Health
2020;5:e001942. doi:10.1136/
bmjgh-2019-001942
Handling editor Seye Abimbola
Received 26 August 2019
Revised 6 February 2020
Accepted 9 February 2020
1Centre for Health Equity,
School of Population and Global
Health, University of Melbourne,
Melbourne, Victoria, Australia
2Institute of Ethics, History and
Theory of Medicine, Ludwig-
Maximilians- University, Munich,
Germany
3Kenya Medical Research
Institute (KEMRI) - Wellcome
Trust Research Programme,
Kili, Kenya
4Health Policy and Systems
Division, School of Public Health
and Family Medicine, University
of Cape Town, Cape Town, South
Africa
5Department of Global Health
and Development, London
School of Hygiene and Tropical
Medicine, London, UK
6Nufeld Department of
Medicine, Oxford University,
Oxford, UK
Correspondence to
Dr Bridget Pratt;
bridget. pratt@ unimelb. edu. au
© Author(s) (or their
employer(s)) 2020. Re- use
permitted under CC BY.
Published by BMJ.
Summary box
There is a decit of health policy and systems re-
search (HPSR)- specic ethical guidance, particularly
in relation to matters of justice.
We call for interpreting the ethical principle of justice
in a more expansive way for HPSR relative to bio-
medical research.
Drawing on the rich justice literature from political
philosophy and public health ethics, we propose a
set of essential justice considerations to uphold this
principle.
These considerations are relevant for research
funders, researchers, research ethics committees,
policymakers, community organisations and others
who are active in the HPSR eld.
ABSTRACT
Health policy and systems research (HPSR) is increasingly
being funded and conducted worldwide. There are
currently no specic guidelines or criteria for the ethical
review and conduct of HPSR. Academic debates on
HPSR ethics in the scholarly literature can inform the
development of guidelines. Yet there is a deciency of
academic bioethics work relating to justice in HPSR. This
gap is especially problematic for a eld like HPSR, which
can entail studies that intervene in ways affecting the
social and health system delivery structures of society. In
this paper, we call for interpreting the principle of justice in
a more expansive way in developing and reviewing HPSR
studies (relative to biomedical research). The principle
requires advancing health equity and social justice at
population or systems levels. Drawing on the rich justice
literature from political philosophy and public health ethics,
we propose a set of essential justice considerations to
uphold this principle. These considerations are relevant
for research funders, researchers, research ethics
committees, policymakers, community organisations and
others who are active in the HPSR eld.
INTRODUCTION
Health policy and systems research (HPSR)
is increasingly being funded and conducted
worldwide.1 In a global context of persistent
disparities in access to high- quality health
services, rising healthcare costs and with
many households facing catastrophic levels of
healthcare expenditure, demand for health
system strengthening through robust HPSR
is rapidly growing.2 3 The boundaries, defi-
nitions and characteristics of HPSR are still
being debated, but emerging consensus is
that HPSR is primarily defined by the ques-
tion it asks rather than its methodological
approach. Central foci are the performance
of health systems and their subcomponents
(hardware: financing, governance, human
resources, medical commodities and infor-
mation systems; and software: power, values
and relationships), consideration of how links
among the subcomponents shape perfor-
mance and how to strengthen health system
performance over time.4 HPSR relies on a
wide range of methods that span positivist
traditions using fixed research designs, such
as economic evaluations, randomised control
trials and other epidemiological designs, and
relativist traditions using flexible research
designs such as qualitative case studies,
ethnographic design and participatory action
research.5 HPSR has strong synergies with
research approaches, including implementa-
tion science, improvement science, delivery
science, operational research and manage-
ment research (figure 1).6
There are currently no specific guidelines
or criteria for the ethical review and conduct
of HPSR.7 For this reason, research ethics
committees at most institutions apply well-
established biomedical research ethics review
criteria and guidelines to HPSR.8 These
guidelines include criteria related to three
prominent principles of biomedical research
ethics: respect for persons, beneficence and
justice.9 This is problematic: while HPSR and
traditional biomedical research share many
ethical principles and concepts, the two fields
differ in numerous ways, including in the
ethical issues and considerations that arise.8 10
This is arguably especially the case for issues
and considerations related to the prin-
ciple of justice, which has traditionally been
on April 9, 2020 by guest. Protected by copyright.http://gh.bmj.com/BMJ Glob Health: first published as 10.1136/bmjgh-2019-001942 on 8 April 2020. Downloaded from
2PrattB, etal. BMJ Global Health 2020;5:e001942. doi:10.1136/bmjgh-2019-001942
BMJ Global Health
Figure 1 HPSR (adapted from Hoffman et al6). HPSR, health policy and systems research.
understood in distributive terms—as the fair distribution
of burdens and benefits—in biomedical research ethics.
This is insufficient for HPSR, for which the consider-
ations are much more complex than purely distributive.
HPSR can entail studies that intervene in ways affecting
the social and health service delivery structures of society
and, thus, have implications for social justice, namely,
whether social structures ensure people’s health, well-
being and participation. It has often been identified as
an essential means to produce the knowledge necessary
to reduce health disparities between and within coun-
tries,11 12 and as having potential to improve our under-
standing of how to change the odds for marginalised
populations to achieve healthy lives.13 However, there is
also the potential for HPSR to have negative implications
for social justice: the focus of HPSR or the way in which
it is conducted can inadvertently undermine people’s
health or well- being, or increase disparities in access to
social and health service delivery structures.
For HPSR, a tailoring of the ethical design and review
process is needed, with the WHO arguing there is a
‘compelling need’ for HPSR- specific guidelines and
criteria (Luyckx et al, p1)[10]. Yet there is a deficiency
of academic bioethics work relating to justice in HPSR,
with the majority of existing scholarship focusing on
autonomy and informed consent.7 Some justice consid-
erations have been identified for the field,7 10 14 but they
are not comprehensive. This gap is especially concerning
for a field like HPSR, where the knowledge generated
can have significant implications for health and social
justice at population and systems levels. It is therefore
imperative that justice considerations be articulated and
discussed specifically, and guidance on addressing them
be formulated, to inform the development of HPSR
ethics guidelines.
In this paper, we begin by taking the position that the
principle of justice itself should be interpreted in a more
expansive way for HPSR (relative to biomedical research),
in a way that is consistent with the foundational moral
commitments of public health. Drawing on the rich
justice literature from political philosophy and public
health ethics, which has largely not yet informed HPSR
ethics, we elaborate on what advancing justice means
for the field of HPSR. We then describe what consid-
erations of justice are essential to take into account for
HPSR to uphold that principle, not only in HPSR priority
setting and funding allocation, but also in reviewing
and designing HPSR projects and programmes. These
considerations are addressed to funders, researchers,
policymakers, practitioners, community organisations,
research ethics committees and others who are active
in the HPSR field. We conclude by discussing and
responding to several possible objections to our proposed
justice considerations for HPSR. We further note that our
focus on justice should be considered in addition to, and
not instead of, adherence to other ethical principles and
values in HPSR.
HPSR’S UNDERLYING MORAL COMMITMENT TO HEALTH AND
SOCIAL JUSTICE
Much HPSR, especially in low- income and middle- income
countries (LMICs), is conducted with the ultimate
aim of reducing health disparities between and within
countries and enhancing health system performance
for those considered disadvantaged and marginalised.8
Recent work in bioethics suggests such an aim is neces-
sary to advance health and social justice globally,15 16 and
advancing justice is consistent with foundational moral
commitments for public health research, practice and
policy.17–19 Upholding justice in HPSR calls for not only
achieving a fair share of benefits and burdens for stake-
holders in programmes of research, but also advancing
health equity and, ultimately, social justice at a popula-
tion or societal level.
To clarify what advancing justice means for HPSR, a
definition of health and social justice is required. While
acknowledging definitional controversies within philos-
ophy, a number of points of convergence and common-
ality do exist. First, theories of justice in health emphasise
the fundamental value of health for all, independent
from gender, ethnicity, place of birth or residence, social
on April 9, 2020 by guest. Protected by copyright.http://gh.bmj.com/BMJ Glob Health: first published as 10.1136/bmjgh-2019-001942 on 8 April 2020. Downloaded from
PrattB, etal. BMJ Global Health 2020;5:e001942. doi:10.1136/bmjgh-2019-001942 3
BMJ Global Health
status, political beliefs and religion.18 20 Second, multiple
theories purport that it is a priority and duty of justice to
avert and alleviate disadvantage.18 20 21 Powers and Faden,
for example, argue that the moral aims of public health
are to improve health and other dimensions of well-
being, with priority given to the needs of the systemati-
cally disadvantaged.18 Systematic disadvantage has been
defined as being vulnerable to or having large short-
falls on a cluster of dimensions of well- being, including
health, security from physical and psychological harm,
attachments, self- determination, respect, and sense and
imagination.18 21 A focus on structural injustices—social
norms and institutions that create an unequal playing
field—is especially important to identify, avert and alle-
viate disadvantage.22 23
Multiple theories of justice call for bringing disadvan-
taged individuals and groups up to a ‘sufficient’ level
of health and well- being, that is, that which is required
for a decent life over a ‘normal’ life span (such as 75
years).18 24 25 To attain and maintain a sufficient level of
health, individuals are entitled to (among other things)
public health and healthcare systems that provide (1)
universal/equitable access to quality healthcare services
that they need and (2) protection against financial
hardship due to out- of- pocket healthcare expendi-
tures through equitable prepayment health financing
mechanisms.25 26 Access to broader social or structural
determinants of health and well- being is necessary
as well.20 25 In countries worldwide, this encompasses
ensuring sufficient health for refugee and migrant popu-
lations (among others).22 27 In countries with a colonial
history, this means ensuring Indigenous health (partic-
ularly in regard to access to quality nondiscriminatory
healthcare services) and decolonising healthcare systems
and broader social structures that shape health.28 29 In
LMICs, supporting sufficient health and well- being for
individuals and groups requires meaningful as opposed
to tokenistic capacity strengthening of local and national
public health, healthcare and health research systems, as
well as in some cases direct support from high- income
countries.16 The aim is for countries to become capable
of ensuring equitable population health and well- being.
A growing number of theories of justice emphasise that,
in addition to sufficient health and well- being, a focus
should be on agency, participation and epistemic justice
aimed at building relational or democratic equality.30–34
Agency is the ability to act on behalf of what you have
reason to value and entails participating in determining
one’s own and society’s actions.31 Epistemic justice means
giving proper respect to individuals as knowers and
sources of information. Democratic participation and
epistemic justice constitute a means for citizens to ensure
that their needs and interests are raised and reflected in
public policies. These theories have recently begun to be
applied to health and support robust citizen or commu-
nity participation in health system decision- making.35 36
Theories of justice also identify procedural requirements
for decision- making about health matters, which describe
how democratic participation should occur. They gener-
ally call for relying on deliberative democratic processes
and norms, including reasonableness, inclusion, equal
voice, accountability and transparency, to achieve just
decision- making.25 37 38
Finally, theories of justice employ principles to assign
specific parties specific responsibilities and obligations
of justice. For example, ‘functional requirements’ or
‘capability to act’ principles assign obligations of justice
to those who, by their roles and resources, are best posi-
tioned to fulfil them.23 26 Applying these allocative prin-
ciples and others to the research context demonstrates
that ethical responsibilities of justice fall not only on
individual researchers but also on other parties, such as
funders, research institutions, ethics review committees
and governments.16 39
ESSENTIAL JUSTICE CONSIDERATIONS FOR HPSR
To support researchers and other actors in the HPSR
community to give more central emphasis to the prin-
ciple of justice in HPSR priority setting, funding alloca-
tion, design and ethical review, we translate the general
facets of health and social justice described previously
into specific justice considerations for HPSR. We further
identify which HPSR actors bear responsibility to consider
them using the capability to act principle (table 1). While
the considerations we identify may not be an exhaus-
tive list, they comprise a robust starting point that can
be refined and expanded on in the future. Many would
also apply to related research approaches, such as imple-
mentation science and operational research. The order
in which the considerations are presented assumes the
following typical sequence of events in research (we
recognise variations to this order may occur in prac-
tice): priorities are set and funding calls made, and then
research teams are assembled and projects designed in
response. Only some projects are funded, which undergo
ethics review and then, if approved, are implemented.
HPSR priority setting
For HPSR projects to help alleviate disadvantage and
promote relational equality, there must be careful
consideration of what research topics are the focus of
funding calls, who selects those topics and who is ulti-
mately allocated funding. The priorities set by HPSR
funders, who are largely based in high- income coun-
tries, strongly determine whether HPSR projects are
designed to generate new knowledge to improve health-
care and systems for marginalised groups, communities
and health system actors.
Global funding for HPSR is frequently focused on
how to expedite the scale- up of priority services. It is
less likely to address deeper, more structural factors
influencing health system equity.40 Theories of justice
in health, however, emphasise the importance of
generating new knowledge about disparities in access
to health services and financial protection, namely, the
on April 9, 2020 by guest. Protected by copyright.http://gh.bmj.com/BMJ Glob Health: first published as 10.1136/bmjgh-2019-001942 on 8 April 2020. Downloaded from
4PrattB, etal. BMJ Global Health 2020;5:e001942. doi:10.1136/bmjgh-2019-001942
BMJ Global Health
Table 1 Essential justice considerations for HPSR projects and programmes
Essential justice considerations Who is responsible for considering them
HPSR priority setting
Do funding platforms and calls prioritise research on equity in health systems and their structural determinants? Funders during priority setting
Are local actors from LMICs included in making decisions about the topics of HPSR funding platforms and calls? Funders during priority setting
Do funding platforms and calls require or permit lead applicants from LMICs? Funders during priority setting
Do funding requirements ensure sufcient funding of local actors and institutions to perform their roles? Funders during priority setting
Research teams
Does the research team include local researchers and other local actors from populations involved in the study or
at least with deep knowledge about those populations? Will they be included as partners and be part of decision-
making throughout the project: from selecting research questions and designing the study to dissemination?
Funders when allocating resources
Researchers and partners when assembling teams
Ethics committees when reviewing projects
Are research team members familiar with the sociopolitical historical background of populations involved in the
study and the social inequalities they experience?
Researchers and partners when assembling teams
Ethics committees when reviewing projects
Are any inadequacies in research team composition and representation of local actors, especially marginalised
groups and health system actors, recognised and discussed?
Researchers and partners when assembling teams
Are systematic initiatives undertaken for local actors who are part of the research team to strengthen their capacity
to conduct independent HPSR?
Researchers and partners when assembling teams
Ethics committees when reviewing projects
Research questions
Are local researchers and other local actors on the research team leading or, at a minimum, part of decision-
making on the research questions?
Funders when allocating resources
Researchers and partners when designing projects
Ethics committees when reviewing projects
Will disadvantaged and marginalised groups or health system actors (or organisations representing them) share
decision- making as part of the research team or, at a minimum, be consulted in setting the research questions?
Funders when allocating resources
Researchers and partners when designing projects
Ethics committees when reviewing projects
Do the research questions align with the priorities of disadvantaged and marginalised groups or health system
actors?
Funders when allocating resources
Researchers and partners when designing projects
Ethics committees when reviewing projects
Will answering the research questions create new knowledge of value for equitable health systems? Funders when allocating resources
Researchers and partners when designing projects
Ethics committees when reviewing projects
Research populations
Does the research population and participants adequately include disadvantaged and marginalised groups and
health system actors?
Funders when allocating resources
Researchers and partners when designing projects
Ethics committees when reviewing projects
Will research project recruitment be informed by and be respectful of marginalised groups’ past experiences with
research and will meaningful engagement be conducted?
Researchers and partners when designing and implementing projects
Ethics committees when reviewing projects
Continued
on April 9, 2020 by guest. Protected by copyright.http://gh.bmj.com/BMJ Glob Health: first published as 10.1136/bmjgh-2019-001942 on 8 April 2020. Downloaded from
PrattB, etal. BMJ Global Health 2020;5:e001942. doi:10.1136/bmjgh-2019-001942 5
BMJ Global Health
Essential justice considerations Who is responsible for considering them
Identifying and responding to harms
Will engagement and communication systems be set up that anticipate and keep track of harms generated by
HPSR, especially for local actors within the research team, communities and health systems?
Researchers and partners when designing and implementing projects
Ethics committees when reviewing projects
How will the study team act to minimise anticipated harms and issues that eventuate to disadvantaged and
marginalised groups and health system actors while also ensuring that the integrity of the science and the
learning—especially about the most vulnerable within systems and communities—is maintained?
Researchers and partners when designing and implementing projects
Ethics committees when reviewing projects
Research capacity development and health system strengthening
Do funding platforms require and support strengthening individual and institutional capacity within LMICS to
conduct independent HPSR?
Funders during priority setting
How will the project’s design, implementation, publication and data sharing plans strengthen individual and
institutional capacity within LMICS to conduct independent HPSR?
Funders when allocating resources
Researchers and partners when designing projects
Ethics committees when reviewing projects
How will the study strengthen study participants’ health systems? Funders when allocating resources
Researchers and partners when designing projects
Ethics committees when reviewing projects
How will the project’s design, implementation, publication and data sharing plans minimise the risk of worsening
disparities in research capacity?
Funders when allocating resources
Researchers and partners when designing projects
Ethics committees when reviewing projects
Creating lasting change
Does the funding platform require and support knowledge translation of HPSR ndings into health and social
policy and practice?
Funders during priority- setting
What efforts will be made to maximise positive outcomes or benets post- study for disadvantaged and
marginalised groups and health system actors?
Funders when allocating resources
Researchers and partners when designing and implementing projects
Ethics committees when reviewing projects
How are actors with the power to change health and social policies engaged? Funders when allocating resources
Researchers and partners when designing and implementing projects
Ethics committees when reviewing projects
Research funding allocation
Is funding is allocated to HPSR research teams and projects that have been assembled and designed with justice
considerations in mind?
Funders when allocating resources
Do decisions about research funding allocation include local actors from LMICs? Funders when allocating resources
HPSR, health policy and systems research; LMICs, low- income and middle- income countries.
Table 1 Continued
on April 9, 2020 by guest. Protected by copyright.http://gh.bmj.com/BMJ Glob Health: first published as 10.1136/bmjgh-2019-001942 on 8 April 2020. Downloaded from
6PrattB, etal. BMJ Global Health 2020;5:e001942. doi:10.1136/bmjgh-2019-001942
BMJ Global Health
nature of such inequalities, their causes and how they
might be addressed.16 When exploring the causes of
such disparities, it is especially vital to generate informa-
tion not only about individuals’ behaviours and health
agency (health knowledge, health- seeking skills and
beliefs, and effective health decision- making) but also
broader structural and social determinants.20–22 26 The
latter includes the exercise of hidden power (structural
and discursive) within and beyond the health system.
(Structural power refers to institutional practices
(formal rules and procedures) and norms that enhance
the capacities or possibilities for action of some and
limit those of others. Discursive power encompasses
language and concepts that create meanings that lead
individuals to think of the world in some ways but not
others. By influencing how individuals think about the
world, this form of power shapes one’s beliefs, prefer-
ences, sense of self and acceptance of the status quo).41
The importance of addressing intersecting structural
and social determinants of health is due to their poten-
tial to cause individuals to fall below or to remain
below a sufficient level of health.18 A key consideration
for HPSR is then: Do funding platforms and calls priori-
tise research on equity in health systems and their structural
determinants?
HPSR is frequently entwined with Western funders’
frames and expectations about priorities. Often, at the
macro level, Western understanding of global health
issues dominate.42 Yet many scholars have pointed out
that Western conceptualisations of health and well-
being are not universally shared or relevant and can,
indeed, be in sharp contrast to values and ideas held by
some communities and groups.28 43 44 Bennett et al raise
the concern: ‘it is unclear to what extent local actors
in LMIC health systems would frame their research
concerns in the same way as global stakeholders’.40
Inclusion in research decision- making of those who
have traditionally been its subjects can bring different,
previously under- represented perspectives into
research and begin to redress power imbalances.45 46
This potentially builds relational equality in HPSR. It
is thus essential that the process of setting the topic/
focus of funding platforms and calls be inclusive of
actors from LMICs who have historically been excluded
from such decisions. Funding priorities should not be
determined solely by funders and experts from high-
income countries. Another important consideration
is then: Are local actors from LMICs included in making
decisions about the topics of HPSR funding platforms and
calls? There should be careful consideration of what
expertise and which local actors to include and from
what sectors. Three important categories of local actors
are researchers, marginalised groups (eg, Indigenous
and refugee) or health system actors (eg, nurses,
community health workers, patients and subnational
policymakers), and actors with the power to change
the policies and practices that affect them (policy-
makers, healthcare providers, insurers, civil society
organisations and community organisations). The
latter category can encompass actors in sectors beyond
health, for example, education, sanitation and law.
Kalinga argues that grants should ideally give local
actors in LMICs ‘platforms to be authoritative sources of
and experts on their cultures and communities’ (Kalinga,
p3)[47]. Further considerations for HPSR are then: Do
funding platforms and calls require or permit (co- )lead appli-
cants from LMICs? Do funding requirements ensure sufficient
funding of local actors and institutions to perform their roles?
Research teams
For HPSR projects to promote health equity, help alle-
viate disadvantage and promote epistemic justice, it is
essential that the composition and functioning of the
research team challenge current global injustices in
global health research. Research teams must include
researchers who understand the sociopolitical and
historical background of the populations involved
in their studies, including systematically disadvan-
taged populations. Ensuring inclusion of researchers
from (or with deep knowledge of) these populations
is an epistemic justice consideration in itself and will
likely contribute to research studies being better
informed and designed. Ideally, HPSR should be led by
researchers from the countries, regions and communi-
ties being researched, with strong collaborations with
other local actors to bring diverse perspectives and
expertise as needed. Involving under- represented local
actors (ie, marginalised groups and/or actors with
health systems, depending on the research focus) also
helps to address epistemic injustice and build relational
equality.
Crucial considerations about research teams for HPSR
are then: Does the research team include local researchers and
other local actors from populations involved in the study or at
least with deep knowledge about those populations? Will they
be included as partners and decision- makers throughout the
project: from selecting research questions and designing the study
to dissemination? Are research team members familiar with the
sociopolitical and historical background of populations involved
in the study and the social inequalities they experience?
Given the historical and current global structural
injustices in health and research systems, it may not
always be possible to ensure a genuinely level playing
field among research team members throughout the
design and conduct of potentially important HPSR.
For example, imbalances may arise between non- local
researchers and local actors, or between different types
of local actors on the research team. Such imbalances
require transparency from the outset, and the incorpo-
ration of systemic efforts to transform the situation from
one of research on or about communities and subpop-
ulations to research by and with their members. Two
further considerations for HPSR are then: Are any inad-
equacies in research team composition and representation of
local actors, especially marginalised groups and health system
actors, recognised and discussed? Are systematic initiatives
on April 9, 2020 by guest. Protected by copyright.http://gh.bmj.com/BMJ Glob Health: first published as 10.1136/bmjgh-2019-001942 on 8 April 2020. Downloaded from
PrattB, etal. BMJ Global Health 2020;5:e001942. doi:10.1136/bmjgh-2019-001942 7
BMJ Global Health
undertaken for local actors who are part of the research team
to strengthen their capacity to conduct independent HPSR?
(We discuss capacity strengthening in more detail later
in the paper).
Research questions
For HPSR projects to promote agency and generate
knowledge that will help improve health systems for those
considered disadvantaged, there must be careful consid-
eration about what research questions are selected and by
whom. Many voices, needs and agendas exist within the
HPSR field: those of funders, global health actors, health
systems researchers, policymakers, healthcare providers
and communities. Given the imbalances outlined in
previous sections, some voices are often excluded from
question setting. LMIC researchers, for example, are
often relegated to the role of ‘a glorified field worker’,
responsible for providing samples or conducting inter-
views but excluded from the ‘creative, interesting and
scientific’ features of the collaboration.48 A key consider-
ation for HPSR is then: Are local researchers and other local
actors on the research team leading or, at a minimum, part of
decision- making on the research question(s)? These will be
local to specific HPSR projects and, therefore, will not
necessarily be the same as the local actors included in
research priority setting and research funding allocation.
Even where the content of research questions comes
from local researchers, health system managers or poli-
cymakers, the questions prioritised may not align with
those articulated by other local actors, especially those
considered marginalised and disadvantaged within
communities or health systems (This is a particular
problem in societies with colonial past and present,
with native populations questioning the legitimacy of
settler governments, health policies and interventions,
and their failure to incorporate Indigenous values and
standpoints28 29).46 49 The community- based partic-
ipatory research literature highlights a continuum
between the ‘utilisation- focused Northern tradition’
and the ‘emancipatory Southern tradition’.50 51 The
former seeks to produce knowledge that addresses the
real- world needs of policymakers and practitioners and
facilitate its translation into action.50 In the Southern
tradition, partnerships are formed with subpopulations
considered to be disadvantaged and marginalised. In
this tradition, research seeks to identify and transform
the root causes or material circumstances that produce
and reproduce social disparities and hierarchies; an
approach that appears quite pertinent to whether
HPSR advances health equity and social justice at the
population and systems levels.50
Some argue that members of marginalised groups
are best positioned to identify the most critical health
issues and inequalities they face.45 Additional proce-
dural considerations are as follows: Will disadvantaged
and marginalised groups or health system actors (or organi-
sations representing them) share decision- making as part of
research teams or, at a minimum, be consulted in setting the
research question(s)? How can such processes achieve norms of
inclusion, accountability and transparency? This is consis-
tent with requirements of justice relating to agency,
deliberation and participation.21 32 46
Contemporary theories of justice explicitly include other
elements consistent with the so- called ‘Southern tradition’.
They call for focusing attention on the importance of
generating new knowledge about disparities within health
systems—for example, in access to health services, financial
protection, and treatment of health system actors—and
exploring their social and structural determinants. For
HPSR, this could mean exploring how such determinants
interact to create poor access to health services and inade-
quate financial protection for systematically disadvantaged
groups and what interventions can address them. Key
considerations for HPSR are then: Do the research questions
align with the priorities of disadvantaged and marginalised groups
or health system actors? Will answering the research question(s)
create new knowledge of value for equitable health systems? This
calls for HPSR to generate new knowledge about how to
achieve fair treatment of marginalised health system actors
and/or how to improve access and financial protection for
marginalised groups. It is consistent with the requirement
of justice to prioritise (or focus on) the needs of those
considered disadvantaged.18 21 34
Research populations
For HPSR projects and programmes to help alleviate
disadvantage in relation to health, there must be careful
consideration about who comprises the research popula-
tion. This encompasses the selection of research popula-
tions and the recruitment of individual participants into
studies.
According to Cassell and Young, ‘[w]here (HPSR)
contributes to the planning of services and policy-
making, the voice of the socially excluded may be
muffled, and that of the better educated and materially
secure, artificially amplified’. (p316)52 Entire geograph-
ical areas or subpopulations that are marginalised or
disadvantaged (eg, certain districts or wealth groups
and types of health system actors) can be excluded
from studies. Within selected research areas or popula-
tions, disadvantaged and marginalised groups or health
system actors can also be excluded from participating in
studies. For example, within host districts, marginalised
groups may not be reached by recruitment materials
for HPSR studies. Participants in HPSR and emergent
learning from studies will then only represent and
reflect the experiences of a limited, better- off or more
visible subset of the population. This means studies may
misrepresent and misunderstand disadvantaged and
marginalised groups’ and health system actors’ expe-
riences, or generate knowledge and learnings that do
not strongly apply to such subpopulations. In so doing,
research processes and outputs may inadvertently exac-
erbate, rather than reduce, unacceptable differences in
experience, health and well- being between and within
populations.
on April 9, 2020 by guest. Protected by copyright.http://gh.bmj.com/BMJ Glob Health: first published as 10.1136/bmjgh-2019-001942 on 8 April 2020. Downloaded from
8PrattB, etal. BMJ Global Health 2020;5:e001942. doi:10.1136/bmjgh-2019-001942
BMJ Global Health
A key consideration for HPSR studies is then: Does the
research population and participants adequately include disad-
vantaged and marginalised groups and health system actors?
‘Adequate inclusion’ could mean that HPSR studies
either focus on particular disadvantaged or marginalised
groups or health system actors to produce new knowledge
with the potential to transform their situation, or suffi-
ciently include such groups and actors in the research
population to ensure that disadvantage and margin-
alisation are better understood and highlighted. The
latter would enable HPSR to generate data that support
comparisons between better- off and worst- off groups, and
between more and less visible groups. For quantitative
studies, adequate inclusion can, for example, produce
knowledge of difference or equivalence of health or
health system issues across different social or geograph-
ical stratifiers, or intersections between several stratifiers.
For qualitative studies, it can support, for example, explo-
ration of the lived realities of those groups and health
system actors considered disadvantaged or marginalised
and help them identify their own abilities and vulnerabil-
ities (including structural drivers behind revealed vulner-
abilities inequities).
Working towards adequate inclusion requires recog-
nition that members of some structurally marginalised
groups might have good reasons to avoid or be suspi-
cious about participation in research.46 Many scholars
have emphasised the crucial role of community
engagement in building trust between researchers and
communities.45 47 53 Community engagement can also
support inclusive participant recruitment strategies. An
important concern for some HPSR studies is then: Will
research project recruitment be informed by and respectful of
marginalised groups’ past experiences with research and will
meaningful engagement be conducted? This is consistent
with the requirements of justice relating to building
relational equality.
Identifying and responding to harms
To ensure HPSR projects do not exacerbate existing
disadvantage and widen disparities in health and well-
being requires anticipation and monitoring of negative
effects that fall disproportionately on local actors.15 45 46
These include medical (physical and psychological),
social, economic and political harms.8 Here, there is a
special interest in hearing about any issues and harms
that are anticipated or experienced by those who have
the least voice and power within research teams, health
systems and communities. Among research teams,
unequal power dynamics can prevent local actors, for
example, from respecting local social customs and
codes.47 An ethical consideration for HPSR is then: Will
engagement and communication systems be set up that antic-
ipate and keep track of harms generated by HPSR for local
actors who are potentially disadvantaged and marginalised
within research teams, health systems and communities? This
is consistent with the requirements of justice relating
to epistemic justice and participation. The harms
identified for local actors within and external to the
research team will likely differ and require different
approaches to mitigate or resolve.
To ensure that HPSR projects do not widen existing
disparities further entails acting on anticipated harms
where monitoring processes suggest that HPSR is having
negative impacts. Efforts should be taken to develop
and implement strategies to minimise anticipated and
identified harms. Another ethical consideration for
HPSR is then: How will the study team act to minimise and
address anticipated harms and issues that eventuate to disad-
vantaged and marginalised groups and health system actors
while also ensuring that the integrity of the science and the
learning—especially about the most vulnerable within systems
and communities—is maintained?
Research capacity development and health system
strengthening
Promoting health of those considered disadvantaged
and marginalised requires strengthening in- country
capacity to deliver health services and lead essential
health research, especially in LMICs. All HPSR projects
and programmes in LMICs, whether initiated within
countries or by external researchers, should contribute
to the sustainable development of health systems and
health research systems. Building researchers’ and insti-
tutions’ capacities to drive nationally relevant HPSR is a
key aspect of achieving that goal. Ethical considerations
for HPSR studies include Do funding platforms require and
support strengthening individual and institutional capacity
within LMICs to conduct independent HPSR? How will the
project’s design, implementation, publications and data sharing
plans further those aims? How will the study strengthen study
participants’ health systems?
It is also critical that HPSR does not exacerbate
disparities in research capacity and career develop-
ment, especially between LMIC researchers and high-
income country researchers or between non- Indigenous
and Indigenous researchers. This could happen, for
example, where LMIC or Indigenous researchers’ roles
are limited to data collection, rather than contributing
to the entire research process, or where these individ-
uals are inappropriately excluded from authorship. It
could also happen where data sharing arrangements
undermine LMIC or Indigenous researchers’ oppor-
tunity to analyse and publish their datasets. Another
ethical consideration for HPSR is: How will the project’s
design, implementation, publications and data sharing plans
minimise the risk of worsening disparities in research capacity?
Creating lasting change
For HPSR to help improve health systems for those
considered disadvantaged and marginalised, the knowl-
edge and learning it generates must be used to inform
health system reform, public health and social action.
Theories of justice contend that ensuring that individ-
uals and groups have sufficient health requires not only
getting health policies right but also getting broader
on April 9, 2020 by guest. Protected by copyright.http://gh.bmj.com/BMJ Glob Health: first published as 10.1136/bmjgh-2019-001942 on 8 April 2020. Downloaded from
PrattB, etal. BMJ Global Health 2020;5:e001942. doi:10.1136/bmjgh-2019-001942 9
BMJ Global Health
health systems and social policies right. Health system
reform and public health efforts should, therefore,
ideally inform policies and practices in sectors beyond
health like housing, education, urban planning and
income.18 20 25 This requires promoting the translation
of HPSR findings into health and social policy and prac-
tice in ways that help reduce health disparities.54 This, in
turn, necessitates executing strategies for promoting the
use of HPSR findings by local actors, namely, disadvan-
taged and marginalised groups and health system actors
and/or those actors with the power to change policies
and practices that affect them. An ethical consideration
for HPSR projects is then: Does the funding platform require
and support knowledge translation of HPSR findings into
health and social policy and practice? What efforts will be made
to maximise positive outcomes or benefits poststudy for disadvan-
taged and marginalised groups and health system actors? How
are actors with the power to change health and social policies
engaged?
Research funding allocation and ethics review
Whether HPSR helps alleviate disadvantage and builds
relational equality is determined by which projects are
ultimately awarded funding. Concern has been raised
that some donors primarily fund HPSR in LMICs on a
narrow set of questions related to service delivery and
scale up rather than HPSR that is responsive to local
needs or focused on equity.47 55 A key consideration
is then: Is funding allocated to HPSR research teams and
projects that have been assembled and designed with justice
considerations in mind? To support building relational
equality, research funders should include local actors
from LMICs on grant review panels and as advisors
when making funding decisions. It is thus important
to consider: Do decisions about research funding allocation
include local actors from LMICs?
Prior to implementation, ethics review committees
should assess funded projects for many of the proposed
justice considerations (table 1). Projects should ideally
also be monitored during implementation, with ethics
review committees empowered and resourced to step in
where justice considerations are being ignored in ways that
could exacerbate existing inequities in health and research
capacity. Such continuous review would mark a change
in practice for many ethics committees worldwide and
would require strong, well- trained and supported ethics
committees.
ADDRESSING POTENTIAL OBJECTIONS
Several objections can be anticipated to our proposed
essential considerations of justice for HPSR. Justice,
in itself, is a contested term, with various interpreta-
tions existing in the philosophy and ethics literatures.
This raises the question: how can demands of justice
be fulfilled in HPSR if there is no unanimous agree-
ment on the concept of justice in general? Beyond this,
from a practical perspective, how can the demands of
justice feasibly be achieved if their realisation is highly
complex? To address the first matter, we have sought
to rely on points of commonality and convergence
among theories of justice to identify the proposed
justice considerations for HPSR. We further empha-
sise that justice considerations require an ongoing
process of debate and revision, in constant exchange
with theorists in the area of health justice, as well as
with researchers, policymakers, community organisa-
tions and others in the HPSR field. Such dialogue can
consider whether the justice considerations are too
demanding to achieve in real- world practice and iden-
tify what structural changes may be required to facili-
tate their being upheld. Fomenting and sustaining this
dialogue is the responsibility of all HPSR actors as well
as ethicists (who may or may not focus on HPSR and
thus may or may not see themselves as HPSR actors).
Another related challenge to our proposed consid-
erations of justice is that their implementation might
obstruct or slow down the conduct of HPSR at a time
when the need for HPSR is widely recognised. A more
inclusive study design that aims to explicitly address
disadvantaged groups’ needs might require including,
for example, migrants who do not speak the language
of the host country; individuals living with disability,
illiteracy or dyslexia who might need assistance to
participate; or geographically remote individuals
whose participation is costly and logistically difficult to
achieve. This might create higher costs, require more
research staff, and slow down studies and learning.
Does the goal of achieving their inclusion as a matter of
justice justify the increase in resources and time neces-
sary to attain it? We cannot offer a general solution to
this problem. How marginalised groups and health
system actors can best be included should be decided
on a case- by- case basis. Our proposal is certainly not
intended to unnecessarily complicate the research
process, and every HPSR project will need to weigh up
the advantages and disadvantages of different inclu-
sion mechanisms. In so doing, however, it should be
recognised that by designing more inclusive research
projects, HPSR will most likely produce results that
better reflect the heterogeneous reality and thus help
develop more responsive and effective health system
practices and policies. Thus, for both justice and data
validity reasons, it is likely to be valuable to embrace
and understand diverse—including historically margin-
alised—perspectives in study designs.
It could be argued that a considerable amount of HPSR
takes place in high- income countries, where disadvan-
tage and health inequity are not as severe as in LMICs.
Is it then necessary and appropriate for the proposed
considerations of justice to apply to HPSR worldwide or
primarily to HPSR in LMICs? We acknowledge that there
are settings in which injustices might be particularly stark
and where a focus on HPSR’s procedural and substantive
contributions to justice is especially needed. Nevertheless,
all societies experience disadvantage, stigmatisation and
marginalisation, and the gap between the rich and poor
on April 9, 2020 by guest. Protected by copyright.http://gh.bmj.com/BMJ Glob Health: first published as 10.1136/bmjgh-2019-001942 on 8 April 2020. Downloaded from
10 PrattB, etal. BMJ Global Health 2020;5:e001942. doi:10.1136/bmjgh-2019-001942
BMJ Global Health
is very wide in some high- income countries. We therefore
suggest that the proposed justice considerations be taken
into account for HPSR in all countries.
Lastly, we acknowledge that tensions may well exist
between the procedural and substantive considerations
that we identify. For example, research questions identified
with the input of disadvantaged and marginalised groups
may not always create strong new knowledge for equi-
table health systems. More broadly, there may be tensions
between the proposed justice considerations and ethical
considerations reflecting other values in HPSR (eg, soli-
darity and beneficence). We emphasise the need for addi-
tional conceptual and empirical work to explore the nature
of these tensions and how they can be navigated.
CONCLUSIONS
We have proposed that the principle of justice should
be interpreted more expansively for HPSR than is
routinely the case for biomedical research. To uphold
this principle, we have identified a set of essential
justice considerations to more centrally incorporate
justice into HPSR priority setting, funding allocation,
design and ethical review. We recognise the large
range of study designs and methodological approaches
encapsulated in HPSR, and the diversity in their scope
and size, and that there are many HPSR projects that
already have justice built in as a core concern and
approach. By articulating these considerations, we hope
to raise the prominence of dimensions of justice as key
ethical considerations in HPSR across different types of
studies. Taking the proposed justice considerations into
account should promote those active in the HPSR field
to more systematically link projects and programmes to
the promotion of health equity and social justice at the
population and systems levels.
Twitter Edwine Barasa @edwinebarasa, Lucy Gilson @Lucy_Gilson and Sassy
Molyneux @sassy.molyneux
Acknowledgements We thank the speakers and attendees of the WHO Experts
Meeting on Ethical Review for Health Policy and Systems Research, held at the
University of Zurich on 23–24 July 2015. Our discussions as part of this meeting
informed the thinking that is reected in this paper. We also thank Vicki Marsh,
Sridhar Venkatapuram and the two anonymous BMJ Global Health reviewers for
providing insightful and constructive comments on earlier versions of this paper.
Contributors BP, VW and SM conceived of and wrote the rst draft of the paper,
with BP taking the lead. Each substantially contributed to the analyses presented
in the paper. TH, EB, LG and DK each contributed substantially to the intellectual
content of the paper and were involved in revising paper. All authors approved the
submitted version of the paper.
Funding BP is currently supported by an Australian Research Council (ARC)
Discovery Early Career Researcher Award (award number DE170100414). The
contents of this article are solely the responsibility of the author and do not reect
the views of the ARC. VW and TH are supported by the German Federal Ministry
(BMBF, FKZ 01GP1791). SM and DK are supported by a Wellcome Trust Strategic
Award to the Global Health Bioethics Network (096527), and SM by a Wellcome
Trust Collaborative Award and by Nufeld Department of Medicine funds at the
University of Oxford. DK is also funded by the Wellcome Trust Humanities and
Social Science (Society and Ethics) (grant number 205419/Z/16/Z).
Competing interests None declared.
Patient consent for publication Not required.
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement There is no data for this article.
Open access This is an open access article distributed in accordance with the
Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits
others to copy, redistribute, remix, transform and build upon this work for any
purpose, provided the original work is properly cited, a link to the licence is given,
and indication of whether changes were made. See:https:// creativecommons. org/
licenses/ by/ 4. 0/.
ORCID iDs
BridgetPratt http:// orcid. org/ 0000- 0002- 4934- 3560
EdwineBarasa http:// orcid. org/ 0000- 0001- 5793- 7177
REFERENCES
1 Alliance for Health Policy and Systems Research. World report
on health policy and systems research. Geneva: World Health
Organization, 2017.
2 World Health Organization. World health report 2013: research for
universal health coverage. Geneva: World Health Organization,
2013.
3 World Health Organization. Health systems nancing: the path to
universal coverage. Geneva: World Health Organization, 2010.
4 Sheikh K, Gilson L, Agyepong IA, etal. Building the eld of health
policy and systems research: framing the questions. PLoS Med
2011;8:e1001073.
5 Gilson L, Hanson K, Sheikh K, etal. Building the eld of health
policy and systems research: social science matters. PLoS Med
2011;8:e1001079.
6 Hoffman SJ, Røttingen J- A, Bennett S, etal. Background paper on
conceptual issues related to health systems research to inform a
who global strategy on health systems research, 2012. Available:
http://www. who. int/ alliancehpsr/ alliancehpsr_ back grou ndpa perh
srstrat1. pdf [Accessed 14 Jul 2013].
7 Pratt B, Paul A, Hyder AA, etal. Ethics of health policy and systems
research: a scoping review of the literature. Health Policy Plan
2017;32:890–910.
8 Hyder AA, Rattani A, Krubiner C, etal. Ethical review of health
systems research in low- and middle- income countries: a conceptual
exploration. Am J of Bioeth 2014;14:28–37.
9 Beauchamp TL, Childress JF. Principles of biomedical ethics. 7th
edn. Oxford: Oxford University Press, 2013.
10 Luyckx VA, Biller- Andorno N, Saxena A, etal. Health policy and
systems research: towards a better understanding and review of
ethical issues. BMJ Glob Health 2017;2:e000314.
11 World Health Organization Task Force on Health Systems Research.
The millennium development goals will not be attained without new
research addressing health system constraints to delivering effective
interventions. Geneva: WHO, 2005.
12 Ministerial Summit on Health Research. The Mexico statement on
health research. Mexico City, 2004.
13 Plough AL. Building a culture of health: a critical role for public
health services and systems research. Am J Public Health
2015;105:S150–2.
14 Alliance for Health Policy and Systems Research (WHO) with the
Global Health Ethics Unit (WHO). Ethical Considerations for Health
Policy and Systems Research. Geneva: World Health Organization,
2019.
15 Faden RR, Kass NE, Goodman SN, etal. An ethics framework for
a learning health care system: a departure from traditional research
ethics and clinical ethics. Hastings Cent Rep 2013;43:S16–27.
16 Pratt B, Hyder AA. Global justice and health systems research
in low- and middle- income countries. J Law Med Ethics
2015;43:143–61.
17 Baylis F, Kenny NP, Sherwin S. A relational account of public health
ethics. Public Health Ethics 2008;1:196–209.
18 Powers M, Faden R. Social Justice: The Moral Foundations of Public
Health and Health Policy. New York: Oxford University Press, 2006.
19 Rogers WA. Feminism and public health ethics. J Med Ethics
2006;32:351–4.
20 Wolff J, de- Shalit A. Disadvantage. Oxford, UK: Oxford University
Press, 2007.
21 Venkatapuram S. Health Justice: An Argument from the Capabilities
Approach. Cambridge: Polity Press, 2011.
22 Chung R, Hunt M, Lenard PT, etal. Justice and health inequalities
in humanitarian crises: Structured health vulnerabilities and natural
disasters. In: Health inequalities and global justice. Edinburgh:
Edinburgh University Press, 2012: 197–212.
on April 9, 2020 by guest. Protected by copyright.http://gh.bmj.com/BMJ Glob Health: first published as 10.1136/bmjgh-2019-001942 on 8 April 2020. Downloaded from
PrattB, etal. BMJ Global Health 2020;5:e001942. doi:10.1136/bmjgh-2019-001942 11
BMJ Global Health
23 Young IM. Responsibility and global justice: a social connection
model. Soc Philos Policy 2006;23:102–30.
24 Nussbaum MC. Frontiers of justice: disability, Nationality, species
membership. Cambridge, MA: Belknap Press of Harvard University
Press, 2006.
25 Daniels N. Just Health: Meeting Health Needs Fairly. Cambridge:
Cambridge University Press, 2008.
26 Ruger JP. Health and social justice. Oxford: Oxford University Press,
2010.
27 Wild V, Dawson A. Migration: a core public health ethics issue.
Public Health 2018;158:66–70.
28 Sherwood J, Edwards T. Decolonisation: a critical step for improving
Aboriginal health. Contemp Nurse 2006;22:178–90.
29 Fay J. Decolonising mental health services one prejudice at a time:
psychological, sociological, ecological, and cultural considerations.
Settler Colonial Studies 2018;8:47–59.
30 Sen A. Development as freedom. New York: Knopf Press, 1999.
31 Young IM. Justice and the Politics of Difference. Princeton University
Press: Princeton, 1990.
32 Fricker M. Epistemic Injustice: Power and the Ethics of Knowing.
Oxford University Press: Oxford, 2007.
33 Anderson ES. What is the point of equality? Ethics
1999;109:287–337.
34 Khader S. Decolonizing Universalism: A Transnational Feminist Ethic.
Oxford University Press, 2018.
35 Voigt K, Wester G. Relational equality and health. Soc Phil Pol
2015;31:204–29.
36 Blease C, Carel H, Geraghty K. Epistemic injustice in healthcare
encounters: evidence from chronic fatigue syndrome. J Med Ethics
2017;43:549–57.
37 Gilson L. In defence and pursuit of equity. Soc Sci Med
1998;47:1891–6.
38 Gutmann A, Thompson D. Why Deliberative democracy? Princeton,
NJ: Princeton University Press, 2004.
39 London AJ. Justice and the human development approach to
international research. Hastings Cent Rep 2005;35:24–37.
40 Bennett S, Agyepong IA, Sheikh K, etal. Building the eld of health
policy and systems research: an agenda for action. PLoS Med
2011;8:e1001081.
41 Gilson L, Doherty J, Lowenson R, etal. Challenging inequity through
health systems: nal report of the knowledge network on health
systems. WHO Commission on the social determinants of health.
Johannesburg: Centre for Health Policy, EQUINET, London School of
Hygiene and Tropical Medicine, 2007.
42 Gautier L, Sieleunou I, Kalolo A. Deconstructing the notion of "global
health research partnerships" across Northern and African contexts.
BMC Med Ethics 2018;19:49.
43 Nie J- B. The plurality of Chinese and American medical moralities:
toward an interpretive cross- cultural bioethics. Kennedy Inst Ethics J
2000;10:239–60.
44 Pillay M, Kathard H. Decolonizing health professionals' education:
audiology & speech therapy in South Africa. African Journal of
Rhetoric 2015;7:193–227.
45 Jamieson LM, Paradies YC, Eades S, etal. Ten principles relevant
to health research among Indigenous Australian populations. Med J
Aust 2012;197:16–18.
46 Tuhiwai Smith L. Decolonizing methodologies: research and
Indigenous peoples. 2nd edn. London: Zed Books, 2012.
47 Kalinga C. Caught between a rock and a hard place: navigating
global research partnerships in the global South as an indigenous
researcher. J Afr Cult Stud 2019;31:270–2.
48 Parker M, Kingori P. Good and bad research collaborations:
researchers' views on science and ethics in global health research.
PLoS One 2016;11:e0163579.
49 MacGregor H, Bloom G. Health systems research in a complex
and rapidly changing context: ethical implications of major health
systems change at scale. Dev World Bioeth 2016;16:158–67.
50 Cargo M, Mercer SL. The value and challenges of participatory
research: strengthening its practice. Annu Rev Public Health
2008;29:325–50.
51 Wallerstein N, Duran B. The theoretical, historical, and practical
roots of CBPR. In: Wallerstein N, Minkler M, eds. Community- based
Participatory Research for Health: From Process to Outcome. San
Francisco, CA: John Wiley & Sons, 2010: 25–46.
52 Cassell J, Young A. Why we should not seek individual informed
consent for participation in health services research. J Med Ethics
2002;28:313–7.
53 Gray MA, Oprescu FI. Role of non- Indigenous researchers in
Indigenous health research in Australia: a review of the literature.
Aust Health Rev 2016;40:459–65.
54 Pratt B, Hyder AA. Linking participatory action research on health
systems to justice in global health: a case study of the maternal and
neonatal implementation for equitable health systems project in rural
Uganda. J Empir Res Hum Res Ethics 2018;13:74–87.
55 Gonzalez- Block MA. Health policy and systems research agendas in
developing countries. Health Res Policy Syst 2004;2:6.
on April 9, 2020 by guest. Protected by copyright.http://gh.bmj.com/BMJ Glob Health: first published as 10.1136/bmjgh-2019-001942 on 8 April 2020. Downloaded from
... Ethics researchers have applied these and other concepts from the philosophy literature on health and social justice to explore what equity means for international research [39][40][41][42]. This conceptual work has proposed that international research collaborations should generate new knowledge to improve the health and well-being of LMIC populations, particularly those considered disadvantaged or marginalized; foster their and LMIC researchers' meaningful participation in decision-making about its conduct; and build research capacity in LMICs [39,40,43]. ...
... Matters of building research capacity, inclusive decision-making throughout the research process, and ensuring collaborations are responsive to the health care and system needs of LMIC populations are discussed. However, the implications of inclusive decision-making for developing research agreements have not been specifically focused upon [39,41,66]. ...
Article
Full-text available
Background Whilst global health research often involves international collaborations, achieving or promoting equity within collaborations remains a key challenge, despite established conceptual approaches and the development of frameworks and guidelines to promote equity. There have also been several empirical studies documenting researchers’ experiences of inequity and views on what is required to advance equity in global health collaborations. While these empirical studies provide critical insights, there has been no attempt to systematically synthetize what constitutes equity and how it can be achieved. To address this gap, we conducted a scoping review of qualitative studies, opinion and editorial pieces about what equity is and how it can be promoted in international collaborations. Methods We conducted a scoping review to explore domains of equity in international health collaborations. This review included qualitative studies and opinion pieces or editorial pieces on equity in international health collaborations. We mapped the data and identified common themes using a thematic analysis approach. Results This initial search retrieved a total of 7611 papers after removing duplicates. A total of 11 papers were included in this review, 10 empirical studies and 1 editorial piece. We conducted our search between October – November 2019. We identified 10 key domains which are important for promoting equity in international collaborations: funding; capacity building; authorship; sample ownership and export; trust; research agreement; acknowledging inequality; recognition and communication. Discussion Our findings suggest that for international collaborations to be considered more equitable, it must at least consider the 10 domains we highlighted. The 10 domains map onto five key aspects of social justice theory, namely avoiding unequal power relations like subordination, group recognition and affirmation, promoting the well-being of all, inclusion in decision-making and ensuring self-development.
... There is also a clear need to maintain robust ethical standards and to encourage equitable academic partnership [77]. Such positive action is in line with recent calls for journals to be explicit about their power and the increasingly recognised social justice mission of global health research [78,79]. However, such positive action is not without risk. ...
Article
Full-text available
Despite the acknowledged injustice and widespread existence of parachute research studies conducted in low-or middle-income countries by researchers from institutions in high-income countries, there is currently no pragmatic guidance for how academic journals should evaluate manuscript submissions and challenge this practice. We assembled a multidisciplinary group of editors and researchers with expertise in international health research to develop this consensus statement. We reviewed relevant existing literature and held three workshops to present research data and holistically discuss the concept of equitable authorship and the role of academic journals in the context of international health research partnerships. We subsequently developed statements to guide prospective authors and journal editors as to how they should address this issue. We recommend that for manuscripts that report research conducted in low-or middle-income countries by collaborations including partners from one or more high-income countries, authors should submit accompanying structured reflexivity statements. We provide specific questions that these statements should address and suggest that journals should transparently publish reflexivity statements with accepted manuscripts. We also provide guidance to journal editors about how they should assess the structured statements when making decisions on whether to accept or reject submitted manuscripts. We urge journals across disciplines to adopt these recommendations to accelerate the changes needed to halt the practice of parachute research.
... It could also help codify, document and share lessons applicable for other countries. This could also help address climate justice (Pratt et al., 2020). Linking health justice, social justice and climate justice is an integral part to addressing the climate crisis and is another place where HPSR could help foster deeper understanding of the needed policy changes (Rouf and Wainwright, 2020). ...
Article
Full-text available
Translational research moves promising primary research results from the laboratory to practical application. The transition from basic science to clinical research and from clinical research to routine healthcare applications presents many challenges, including ethical. This paper addresses issues in the ethics of translational audiology and discusses the ethical principles that should guide research involving people with hearing loss. Four major ethical principles are defined and explained, which are as follows: beneficence, nonmaleficence, autonomy, and justice. In addition, the authors discuss issues of discrimination and equal access to medical services among people with hearing loss. Despite audiology’s broad field of interest, which includes evaluation and treatment of auditory disorders (e.g., deafness, tinnitus, misophonia, or hyperacusis) and balance disorders, this study focuses primarily on deafness and its therapies.
Article
Full-text available
Background : Community engagement (CE) is increasingly accepted as a critical aspect of health research, because of its potential to make research more ethical, relevant and well implemented. While CE activities linked to health research have proliferated in Low and Middle Income Countries (LMICs), and are increasingly described in published literature, there is a lack of conceptual clarity around how engagement is understood to ‘work’, and the aims and purposes of engagement are varied and often not made explicit. Ultimately, the evidence base for engagement remains underdeveloped. Methods : To develop explanations for how and why CE with health research contributes to the pattern of outcomes observed in published literature , we conducted a realist review of CE with malaria research – a theory driven approach to evidence synthesis. Results: We found that community engagement relies on the development of provisional ‘working relationships’ across differences, primarily of wealth, power and culture. These relationships are rooted in interactions that are experienced as relatively responsive and respectful, and that bring tangible research related benefits. Contextual factors affecting development of working relationships include the facilitating influence of research organisation commitment to and resources for engagement, and constraining factors linked to the prevailing ‘dominant health research paradigm context’, such as: differences of wealth and power between research centres and local populations and health systems; histories of colonialism and vertical health interventions; and external funding and control of health research. Conclusions : The development of working relationships contributes to greater acceptance and participation in research by local stakeholders, who are particularly interested in research related access to health care and other benefits. At the same time, such relationships may involve an accommodation of some ethically problematic characteristics of the dominant health research paradigm, and thereby reproduce this paradigm rather than challenge it with a different logic of collaborative partnership.
Article
Full-text available
Bringing evidence into policy and practice discussions is political; more so when evidence from health studies or programme data are deemed controversial or unexpected, or when results are manipulated and misrepresented. Furthermore, opinion and misinformation in recent years has challenged our notions about how to achieve evidence-informed decision-making (EIDM). Health policy and systems (HPS) researchers and practitioners are battling misrepresentation that only serves to detract from important health issues or, worse, benefit powerful interests. This paper describes cases of politically and socially controversial evidence presented by researchers, practitioners and journalists during the Health Systems Research Symposium 2020. These cases cut across global contexts and range from public debates on vaccination, comprehensive sexual education, and tobacco to more inward debates around performance-based financing and EIDM in refugee policy. The consequences of engaging in controversial research include threats to commercial profit, perceived assaults on moral beliefs, censorship, fear of reprisal, and infodemics. Consequences for public health include research(er) hesitancy, contribution to corruption and leakage, researcher reflexivity, and ethical concerns within the HPS research and EIDM fields. Recommendations for supporting researchers, practitioners and advocates include better training and support structures for responding to controversy, safe spaces for sharing experiences, and modifying incentive structures.
Article
Steering health systems towards universal health coverage requires research on themes that are of particular interest to health planning, management, policy and systems researchers. Some issues, such as strikes regarded as illegal and health sector corruption, because of their social and political sensitivity have, for too long, remained outside adequate research inquiry. Their emergence in the research agenda raises some challenges for Human Research Ethics Committees, particularly related to their conflicts of interests as reviewers, that need clarification.
Article
Full-text available
4 years into the new millennium, the health of the world’s citizens is remarkably uneven. A child born today in Japan, for example, can expect to live to age 82 years on average, whereas it is unlikely that a newborn infant in Zimbabwe will reach his or her 34th birthday. Over several decades, scientific progress has expanded our ability to improve human health, and many regions of the world have achieved significant health gains. Yet extreme deprivation in health is still widespread. Resolving this predicament of major health improvement in the midst of deprivation is one of the greatest global challenges of the new millennium.
Article
Full-text available
Background: Global health conceives the notion of partnership between North and South as central to the foundations of this academic field. Indeed, global health aspires to an equal positioning of Northern and Southern actors. While the notion of partnership may be used to position the field of global health morally, this politicization may mask persisting inequalities in global health. In this paper, we reflect on global health partnerships by revisiting the origins of global health and deconstructing the notion of partnership. We also review promising initiatives that may help to rebalance the relationship. Results and discussion: Historical accounts are helpful in unpacking the genesis of collaborative research between Northerners and Southerners - particularly those coming from the African continent. In the 1980s, the creation of a scientific hub of working relationships based on material differences created a context that was bound to create tensions between the alleged "partners". Today, partnerships provide assistance to underfunded African research institutions, but this assistance is often tied with hypotheses about program priorities that Northern funders require from their Southern collaborators. African researchers are often unable to lead or contribute substantially to publications for lack of scientific writing skills, for instance. Conversely, academics from African countries report frustrations at not being consulted when the main conceptual issues of a research project are discussed. However, in the name of political correctness, these frustrations are not spoken aloud. Fortunately, initiatives that shift paternalistic programs to formally incorporate a mutually beneficial design at their inception with equal input from all stakeholders are becoming increasingly prominent, especially initiatives involving young researchers. Conclusion: Several concrete steps can be undertaken to rethink partnerships. This goes hand in hand with reconceptualizing global health as an academic discipline, mainly through being explicit about past and present inequalities between Northern and Southern universities that this discipline has thus far eluded. Authentic and transformative partnerships are vital to overcome the one-sided nature of many partnerships that can provide a breeding-ground for inequality.
Article
Objectives: In this article, we outline the link between migration, public health and ethics. Study design: Discussing relevant arguments about migration from the perspective of public health and public health ethics. Methods: Critical review of theories and frameworks, case-based analysis and systematic identification and discussion of challenges. Results: Migration is a core issue of public health ethics and must take a case-based approach: seeking to identify the specific ethical dimensions and vulnerabilities in each particular context. Public health as a practice, built upon the core value of justice, requires the protection and promotion of migrants' well-being (even if this produces tension with immigration services). Ethical analysis should take all phases of migration into account: before, during and after transit. We argue that migration policies, at least as they relate to migrants' well-being, should be founded upon a shared humanity, respect for human rights and on the idea that effective public health cannot and should not be confined within the borders and to the citizens of any host country. Conclusions: We make the case for migration to be seen as a core issue of public health ethics.
Article
An ethical framework called "research for health justice" provides initial guidance on how to link health systems research in low- and middle-income countries to health equity. To further develop the largely conceptual framework, we tested its guidance against the experience of the Maternal and Neonatal Implementation for Equitable Health Systems (Manifest) project, which was performed in rural Uganda by researchers from Makerere University. We conducted 21 in-depth interviews with investigators and research implementers, directly observed study sites, and reviewed study-related documents. Our analysis identifies where alignment exists between the framework's guidance and the Manifest project, providing initial lessons on how that was achieved. It also identifies where nonalignment occurred and gaps in the framework's guidance. Suggestions are then made for revising and expanding "research for health justice."