SOLUTION: Walden University SOCW 6361 Week 5 Policy Agendas Paper

Article
Developing a Transformative
Drug Policy Research Agenda
in the United States
Contemporary Drug Problems
2019, Vol. 46(1) 3-21
ª The Author(s) 2018
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DOI: 10.1177/0091450918811178
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Ingrid Walker1 and Julie Netherland2
Abstract
Despite its strengths, drug policy scholarship in the United States has deficiencies and systemic biases
that contribute to misinformation about drugs and people who use drugs. Factors ranging from funders’ biases to an overemphasis on abstinence-only outcomes limit the scope and focus of drug policy
research. These deficiencies and the highly politicized nature of drug policy reform have led U.S.
decision-makers to largely reproduce the uninformed thinking that epitomizes failed drug policies. In
an effort to address some of these limitations, we designed Unbounded Knowledge: Envisioning a New
Future for Drug Policy Research, a project to engage researchers in thinking about how U.S. drug
policy research should be transformed. The project involved a diverse group of multidisciplinary drug
researchers and clinicians in a focused collaboration to identify what drug research should be—but is
not—studying in the U.S. It consisted of: (1) a preliminary series of interviews with researchers, (2)
identification of common research constraints and factors that would transform the direction of drug
policy research in the U.S., and (3) a daylong workshop to craft an aspirational research agenda.
Participants were broadly in consensus that significant changes are needed to create different ways to
conduct drug policy research and new opportunities within the research environment. They also
generated specific ideas for research that could better shape U.S. drug policies in ways that move
beyond the dominant focus on criminalization and medicalization. This article offers recommendations
generated by the project for improving drug policy research in the U.S.
Keywords
drug policy, research methods, research funding, harm reduction, United States
Introduction
Drug policy in the United States has been influenced by multiple forces, including medicalization,
harm reduction, and decriminalization, but among them, prohibition remains dominant. Researchers in
1
2
University of Washington, Tacoma, WA, USA
Drug Policy Alliance, New York, NY, USA
Received April 27, 2018. Accepted for publication September 30, 2018.
Corresponding Author:
Ingrid Walker, University of Washington, 1900 Commerce Ave., Tacoma, WA 98402, USA.
Email: iwalker2@uw.edu
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Contemporary Drug Problems 46(1)
the U.S. have produced a breadth of high-quality work in this context, and yet the narrow prohibitionist
framework of American drug policy continues to influence and constrain the research it helps fund and
produce. Some U.S. scholars note that drug policy research can manifest assumptions, deficiencies,
and systemic biases that contribute to misinformation about drugs and people who use drugs (Brownstein, 2016; G. Hunt, Milhet, & Bergeron, 2011; Kilmer, Caulkins, Pacula, & Reuter, 2012; Kleinman,
Caulkins, Hawken, & Kilmer, 2012; National Research Council, 2001; Netherland, 2016). In a recent
example, in 2015, Nancy Campbell and David Herzberg hosted a U.S. symposium calling for the
incorporation of gender analysis into critical drug scholarship (Campbell & Herzberg, 2017). Yet, such
critical analyses remain a subset of U.S. drug research. As a result, conversations about drug use in the
public sphere, including those among policymakers, media, researchers, and the general public, reveal
a wide variety of thinking about who uses drugs, why, and with what outcomes. Many researchers in
the U.S. struggle with the prohibitionist model’s constraints and conditions, particularly its reductionist perceptions of drugs and people who use drugs through the lenses of criminalization and the
medicalization of addiction (Alexander, 2011; Clark, 2011; Conrad & Schneider, 1980; Garriott,
2013; Granfield & Reinarman, 2014; Hansen, 2017; G. Hunt & Barker, 2001; G. P. Hunt, Evans, &
Kares, 2007; Netherland, 2012; Raikhel & Garriott, 2013; Reinarman, 2005). Historically, much of
this misunderstanding has been driven by racism, classism, and stigma about people who use illegal
drugs and has resulted in punitive and largely ineffectual policies (Mauer, 1999; McKim, 2017; Sales
& Murphy, 2007). While elsewhere in the world there may be a “quiet revolution” happening within
drug policy research (Brownstein, 2016), in the U.S., the community of critical drug researchers is
relatively small, and drug policy research remains largely bound by the ideologies of criminalization
and medicalization (Netherland, 2012).
These deeply entrenched ideological forces affect drug policy, in that “the fundamental inconsistencies of drug prohibition continue to be accommodated in policy reform” (Taylor, Buchanan, &
Ayres, 2016, p. 453). We argue that the same can be said of the vast majority of drug policy and
addiction research in the U.S.: Because it accommodates and functions within the prohibitionist
framework, it has limited effectiveness in producing new ideas or in helping propel forward needed
changes. Indeed, Lancaster (2016) has pointed out that the “evidence” produced by researchers does
not sit outside of the policy process but that policy processes and evidence are interrelated, each
helping to enact the other. What we mean by “addiction” or “drugs” is constantly in flux, reflecting
contemporary understandings and sociopolitical debates far more than any truths inherent in those
concepts (Fraser, Moore, & Keane, 2014; Keane, 2002; Netherland, 2012). Often, U.S. research on
drug policy and addiction reinforces the assumptions of the policy and cultural framework in which it
is situated resulting, for example, in an overemphasis on abstinence-only or prohibition-related outcomes with a focus on pathology, loss of control, and the harms associated with “problematic use”
(Frank & Nagel, 2017; Heather, 2017; G. Hunt & Barker, 2001). At the same time, this frame and
related drug policy research ignore the vast majority of drug use that is recreational and functional,
while taking for granted the arbitrary lines drawn between legal and illegal substances. In the U.S., the
ways in which prohibition has constituted a cultural understanding of drugs and users continue to
produce problems with particular meanings, “problems” that reinforce assumptions about drugs and
users rather than open new solutions at the state and federal levels (Bacchi, 2012). This understanding
of drug policy as one site in which “the politics and materiality of drugs are made” (Fraser & Moore,
2011, p. 500) reflects the indeterminacy of “drugs” and “users,” even as it acknowledges the dominance of prohibitionist knowledge production.
Additionally, how research informs policy poses particularly challenging systemic issues in the
U.S. (Brownstein, 2013; Daniels & Thistlewaite, 2016; Gstrein, 2018; Stein & Daniels, 2017). Almost
two decades ago, the U.S. National Research Council’s (NRC) comprehensive report argued that the
nation’s data and research programs were “strikingly inadequate to support the full range of policy
decisions that the nation must make” (NRC, 2001, p. 1). Little has changed to improve the “woeful lack
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of investment in programs of data collection and empirical research” about drug use to assess and
inform drug policy (NRC, 2001, pp. 1, 7). Despite recognized limitations in methods, common data
sets like the National Survey on Drug Use and Health continue to be the standard in U.S. drug policy
research (Barratt et al., 2017; Walker, 2017). Beyond the kinds of evidence that are produced, the
dissemination of research suffers from a lack of communication among the disparate organizations,
disciplines, and individuals involved in drug policy research—much of it is shared with small, focused
audiences (Campbell & Herzberg, 2017; Kleinman et al., 2012; Peretti-Watel, 2011; Ritter, 2009;
Taylor, 2016). Consequently, the use of research in policy-making is selective and tends to reinforce
flawed understandings of both legal and illegal drugs and the people who use them (Du Rose, 2015;
Hammersley, 2011; Moore, 2008; Ritter, 2009; Sturgeon-Adams, 2013; C. H. Weiss, 1983). This selfreinforcing dynamic extends to public discourse in the U.S., where the stigma, misinformation, and
myths about drugs and people who use drugs persist, repeated even by reputable media outlets
(Linnemann and Wall, 2013; Reeves & Campbell, 1994; Reinarman & Levine, 1989; Swalve &
DeFoster, 2016; Walker, 2017). The highly politicized nature of drug policy reform, fed by a
knowledge-deficit about drugs and the people who use them, has led U.S. decision-makers to largely
reproduce the uninformed thinking that epitomizes failed drug policies.
What has been missing in the U.S. is a research agenda that attempts to address the systemic,
fundamental fallacies of the prohibitionist framework. Gstrein (2018), in a scoping review of social
construction and ideation research in drug policy, defines drug policy as “government policy that
addresses issues arising from the use of illicit drugs, with a particular focus on health outcomes”
(Gstrein, 2018, p. 76). We use “drug policy research” here to refer to this domain but also include
research that concerns addiction, treatment, harm reduction interventions, drug supply and markets,
and drug-related criminal justice research. Despite the emergence of research contesting reductionist
notions of drugs and people who use them—more broadly outside of the U.S. but also as a minority
voice within U.S. research (see, e.g., Bourgois & Schonberg, 2009; Campbell, 2002, 2007; Campbell
& Herzberg, 2017; Granfield & Reinarman, 2014; G. Hunt et al., 2011; Moore, 2008; Netherland,
2012; Raikhel & Garriott, 2013; Reinarman, 2005)—dominant drug policy discourse in the U.S.
continues to impede complex understanding of drug-related issues, perpetuating a research culture
that confirms normative assumptions that drugs are a threat and precludes alternative knowledges and
more holistic research programs. To make more effective interventions in the widespread effects of
prohibitionist thinking, Taylor (2016) calls for a “collective action by critical scholars to contest these
damaging processes,” for scholars to move forward with innovative research agendas and for scholars
to “go public” even when they risk being “othered” and devalued (p. 101).
To focus on addressing these issues as well as answering the call for innovative research in the U.S.,
we initiated a project entitled, UnBounded Knowledge (UBK): Envisioning a New Future for Drug
Policy Research. As a collaboration between a cultural studies scholar and a social scientist with a
background in public health research, UBK brought concerns from those fields about the social
construction of drugs and users to bear on the question of how U.S. drug policy research could be
influenced to challenge (and think beyond) the cultural bounds of drug criminalization and medicalization. We also wanted to consider ways to approach related constraints within the U.S. research
context, such as the lack of centralized data repositories, the absence of nationalized health care and
attendant records, and the current inability to link administrative data systems at the level of individuals. The project included a diverse group of multidisciplinary drug researchers in a focused collaboration to identify what drug research in the U.S. should be (but is not) studying absent these
constraints. UBK engaged this group of researchers through interviews and a structured, collaborative
conversation to articulate ways to move past specific research barriers to create more interdisciplinary
studies in areas that were identified as opportunities for and most critically in need of change. Through
this project, we identified several key areas that would begin to move U.S. research beyond the current
constraints, including new ways of doing drug policy research and specific research projects that
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would help shift U.S. policy in new directions. In this article, we report on the project, particularly its
emphasis on how to better inform research gaps in the U.S. through a collaborative, interdisciplinary
approach.
U.S. Research Environment
Drug policy research in the U.S. has been shaped not only by the cultural context of stigma and biases
about people who use drugs but also by systemic issues that have reinforced the prohibition model,
such as how drug research is designed and funded, how academic incentives and organization shape
research, and a variety of methodological limitations within drug research practices. Critical drug
scholars, largely outside the U.S., have focused on the ways in which the roles of stakeholders, ideas,
politics, and public discourse co-construct drug policy and its conception of drugs and users (Fraser &
Moore, 2011; Gstrein, 2018; Lancaster, Ritter, & Diprose, 2018; MacGregor, 2013; Race, 2017; Smith,
2015; Thompson & Coveney, 2018). Such scholarship theorizes working more fluidly with the conceptual framework of evidence-based policy (EBP), pursuing ontological and epistemological questions about what and who constitute knowledge and evidence, and proposing “a post-evidence based
approach to policy analysis” (Gstrein, 2018, p. 83). With drug policy research evolving in these
theoretical directions elsewhere, we might ask how the U.S. drug policy research community remains
somewhat entrenched in the EBP model and seems challenged to address its policy environment.
Two documents, produced 16 years apart, help illustrate some of the ways in which drug policy
research in the U.S. has trouble identifying, much less critiquing, the prohibitionist framework that
frames and helps produce it. The 2001 NRC report for the Office of National Drug Control Policy
(ONDCP) laid out a series of recommendations for improving drug policy research in the U.S. While
the report covers an astonishing amount of terrain, its primary conclusions were to invest in infrastructure and data systems to better assess illegal drug consumption and the effectiveness of enforcement policies aimed at drug users. Written in service of the ONDCP at a time when billions of dollars
had already been spent on punitive drug policies resulting in the mass criminalization of hundreds of
thousands of Americans, the authors call for better and more diverse evidence to support or challenge
the effectiveness of those policies. However, they fail to challenge the fundamental drug war framework by, for instance, interrogating the arbitrary divisions between illicit and legal substances or
calling for research into the underlying motivations or root causes of drug use. Even their nod to a
reduction of the demand for drugs is focused on evaluating the effectiveness of sanctions to reduce
demand. While the report recognizes limitations inherent in the ONDCP’s criminalization policy, such
as the desirability of having better data about drug consumption, the NRC review is restricted in its
ability to question some of the fundamental fallacies and assumptions undergirding it (NRC, 2001, pp.
3, 6, 11). This is not surprising at a time when the ONDCP’s budget tripled, escalating funding for the
war on drugs and antidrug media campaigns (ONDCP H11225, 1998).
In 2018, more than 15 years later, the key funders of drug research in the U.S., the National
Institutes of Health (NIH; Courtwright, 2010; Malizia & Ferro, 2014), received an additional $500
million USD from Congress to address the opioid overdose crisis. In the research plan for the Helping
to End Addiction Long-Term initiative, the NIH writes that it intends to focus on medications for
treatment, overdose prevention, and reversal; neonatal abstinence syndrome; nonaddictive medications and alternative treatments to pain; and optimizing treatments for opioid use disorder with a focus
on the expansion of medication-assisted therapies (Collins, Koroshetz, & Volkow, 2018). While all
laudable goals, this research plan, like the one proposed by the NRC, likely does little to disrupt a
policy framework that remains rooted in a narrow individualistic approach overly focused on the end
point of addiction, one that does little to account for (much less intervene in) the social determinants of
drug use, or employ additional harm reduction interventions proven effective internationally, such as
safer consumption spaces or heroin-assisted treatment.
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This challenge to establish a more expansive and critical research agenda in the U.S. is perhaps not
surprising given that, in the U.S., drug research funding often comes with particular ideological purse
strings. In addition to the federal mandate to sustain drug prohibition, the funding of drug policy
research is tied not just to the drug war but to its twin logic, a medicalized understanding of drug use as
addiction. The vast majority, up to 80%, of drug policy research is funded by the National Institute on
Drug Abuse (NIDA; Malizia & Ferro, 2014), whose mission and scope are narrow: “to lead the Nation
in bringing the power of science to bear on drug abuse and addiction” (Volkow, 2011). NIDA’s
emphasis on addiction neuroscience has become a primary area in U.S. drug research (Campbell,
2007, 2010; Hall et al., 2015; Reinarman, 2005). Sociologist Scott Vrecko (2010) describes NIDA as
largely responsible for making “the neuroscientists’ laboratory . . . an obligatory passage point for the
production of truths about addiction” (p. 58). NIDA’s overemphasis on the brain de-emphasizes other
systemic factors influencing drug use, such as poverty, racism, and the social environment (Hansen &
Netherland, in press). A review of their 2016–2020 strategic plan reveals that NIDA generally does not
intend to fund projects that examine harm reduction interventions, the therapeutic potential of drugs
such as cannabis, or the harm associated with current drug policies grounded in abstinence, the threat
of punishment, or its collateral consequences (NIDA, n.d.). For example, the words “harm reduction”
appear nowhere in the 60-page strategic plan. Rather, NIDA spent 43% ($438.1 million) of its budget
on basic and clinical neuroscience; 25% ($252 million) on epidemiology, services and, prevention
research; and split 13% ($131.9 million) between medications development and research into how
specialists in infectious diseases common among people who use drugs can help screen and provide
interventions for addiction. The remaining 19% ($193.7 million) went to intramural research, support
for a clinical trial network, and administrative support (Koch, 2015).
Some have argued that the NIH’s extramural funding system, including NIDA, creates another
problem: It favors more experienced researchers over younger ones and more conservative projects
over more innovative ones. According to an essay by four scientists, including Harold Varmus, MD,
Nobel Prize co-recipient and once director of the NIH, “The system now favors those who can
guarantee results rather than those with potentially path-breaking ideas that, by definition, cannot
promise success” (Alberts, Kirschner, Tilghman, & Varmus, 2014, p. 5774).
In addition to issues of focus and funding, the field of U.S. drug policy research faces a number of
methodological limitations, in part, stemming from the policy context that shapes it. For example,
there is a considerable focus on the most extreme drug use (addiction) and its treatment to the
exclusion of other drug use and natural recovery (Decorte, 2011; Granfield & Cloud, 1999; O’Malley
& Valverde, 2004; Sobell, Ellingstad, & Sobell, 2000). The lack of a broad view of drug use means
U.S. research consistently forgoes understanding the vast majority of people who use drugs, those who
are self-regulating, and their motivations and concerns (Askew & Salinas, 2018; Duff, 2004; Fraser,
2008; Kiepek & Beagan, 2018; Race, 2009, 2017; Walker, 2017). Also, in the U.S. policy context,
there is often a failure to adequately include and involve those directly impacted by drug use or drug
policies in research design, collection, and interpretation of data based, in part, on stigma and assumptions about the inability of people to use drugs to engage meaningfully in such activities produced
(Jürgens, 2005; Lancaster et al., 2018; Osborn & Small, 2006).
Taken together, all of these issues present a significant problem: They outline the context of what
we in the U.S. can and do collectively “know” about drugs, the impact of our drug policies, and how to
best respond to both ongoing and emerging drug-related problems. A significant challenge in the U.S.
research environment is the self-fulfilling hold that the prohibitionist model has on many aspects of the
drug policy landscape, from policy and funding to public health and public opinion. For example, in
the midst of the current opioid overdose crisis, despite the emergence of interest in harm reduction
strategies, the U.S. policy response to illegal drug use continues to be driven by prohibitionist and
medicalized contexts. The federal government has doubled down on criminalization through mandates
such as the U.S. Department of Justice’s (2018b) memos to “combat this deadly [opioid] epidemic” by
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urging federal prosecutors to “consider every lawful tool at their disposal,” including “seeking capital
punishment for certain drug-related crimes”. This followed a memo in which the U.S. Department of
Justice (2018a) urged prosecutors to pursue marijuana violations to the fullest extent of the law.
Further, because public drug discourse in the U.S. cannot seem to escape medicalization’s logic of
illegal drug use as harmful and drug addiction as requiring abstinence as a solution, harm reduction is a
nonstarter at the federal level. Instead, the focus is on reducing supply and addiction treatment (President’s Commission on Combatting Drug Addiction and the Opiate Crisis, 2017). While a handful of
the states hit hardest by the opiate crisis are attempting to implement needle exchange programs and
open safe consumption sites, such harm reduction measures struggle to win public support at the local
level precisely because they are not seen, as Keane (2003) argues in other contexts, as value-neutral in
the moralized arena of drug debate.
UBK Project
The UBK project was designed as a deliberate attempt to generate fresh thinking about the future of
U.S. drug policy research in ways that would address the confines of the prohibitionist and addictionfocused medicine frames that have dominated the field. While the premise of the project is founded in
the scholarship that demonstrates particular gaps and biases in U.S. drug policy research landscape, we
in no way mean to suggest that there is no excellent research being done in the U.S. and abroad that
provides counterexamples and critiques to the U.S. prohibitionist framework. Nor did we construct this
as a formal, disciplinary research study. Rather, the project was an attempt to be broadly generative in
developing applied projects that would address the interstices and absences in current U.S. drug policy
research. We acknowledge that UBK was informed by a certain political sensibility and that the project
was intentionally framed to invite researchers to partner in a different kind of intervention or problemsolving. If “evidence” is not fixed, but constituted in part by specific performances and practices
(Lancaster, 2016), our hope was to invite and explore less dominant or conventional performances and
practices. In particular, there are few opportunities in the U.S. for truly interdisciplinary drug research
(Dunbar, Kushner, & Vrecko, 2010; Kushner, 2006) and, thus, the knowledge generated is frequently
bound by disciplinary siloes as much as by the prohibitionist context in which we work.
UBK was conceived of and implemented by a university-based researcher and the Drug Policy
Alliance (DPA, 2018), an advocacy organization whose mission is “to advance those policies and
attitudes that best reduce the harms of both drug use and drug prohibition, and to promote the
sovereignty of individuals over their minds and bodies.” In this sense, UBK was a deliberate attempt
to collectively envision a research agenda that could imagine and work in a context beyond the frame
of prohibition and to encourage participants to think expansively and in a multiplicity of ways about
potential research that would improve U.S. drug policy. We thought a multi- and interdisciplinary
collaboration across what are often epistemic or disciplinary boundaries would illuminate new ways to
address long-standing, systemic issues in drug policy research in the U.S. Our hope was to model a new
way of working for U.S. drug researchers.
The project consisted of three distinct parts: (1) a preliminary series of interviews with researchers
and drug policy-related professionals, (2) the identification of common research constraints and a set
of factors that would transform the direction of drug policy research, and (3) a daylong workshop to
craft an aspirational research agenda built on this foundation. The project’s goals were to illuminate the
problems in the current drug policy research landscape from a multidisciplinary perspective, imagine
what drug policy research could and should look like, and develop a core of multidisciplinary researchers who might take this conversation back out into a variety of research contexts. Our ultimate
objective was to start a dialogue within the drug research and research funding communities in order
to begin to shift the kinds of research that are funded and conducted. Over the summer and fall of 2017,
we interviewed more than 30 professionals, mostly from the field of research, whose work informs or
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reflects drug policy. Participants were selected to include individuals from a wide array of disciplines,
stages of career, and settings. We sought individuals whose work is characterized by fresh thinking and
applied solutions and whom we believed would welcome stepping outside the dominant U.S. research
paradigm as well as collaborating freely across disciplines and areas of expertise. We selected participants in consultation with a committee of researchers from harm reduction, sociology, social work,
drug policy, and gender studies. The participant group was crafted with special attention to perspectives that are often not well represented in U.S. drug policy—such as the perspectives of people who
use drugs—eventually creating a group of researchers, researcher/clinicians, and a journalist working
at the intersection of science and drug policy. In designing the project, we had in mind methods akin to
that used by Nutt et al. (2010), who convened a group of experts to help establish a framework for
determining drug harms. Consensus methods have long been used in health and health services
research, particularly for controversial topics. Our project also draws on the nominal group process
in which participants are first asked to answer questions individually and then brought together for a
structured group discussion (Fink, Kosecoff, Chassin, & Brook, 1984; J. Jones & Hunter, 1995).
To gather individual answers, we conducted 30 one-on-one interviews by phone and a follow-up
e-mail. We asked participants to reflect on what factors currently constrain drug research in the U.S.
and, as a result, what researchers currently do not know but should seek to learn. Using a semistructured guide, the two authors of this manuscript conducted the interviews, which lasted between
45 and 60 minutes. The interview guide consisted of five questions about limitations and gaps in the
current research environment, focusing on gaps in the research, methodological issues, funding problems, and sources of bias in the research. For most of the interviews, a second staff person sat in on the
interview and took notes. The interviews were not recorded or transcribed but were well represented in
extensive notes, which were then analyzed by the interviewers, along with the broader project team, to
identify the key themes.
Researchers have debated the advantages of tape recording interviews (see, e.g., Cachia & Millward, 2011; Halcomb & Davidson, 2006; R. S. Weiss, 1995). We opted not to tape or transcribe our
interviews due to the specific nature of this project. First, our request to participants to identify a
significant set of constraints on research asked them to, potentially, be critical of the very systems in
which they work (editorial boards, federal grant fund sources, etc.) and so we kept comments anonymous to increase their comfort and candor. Second, because we were asking participants to identify a
systemic set of factors—the barriers they faced, the gaps they saw, and the methodological issues they
observed—our interest was in capturing major themes and ideas rather than analyzing transcripts for a
detailed textual or discourse analysis. Note-taking more than adequately captured these responses.
Participants’ responses provided a rich body of material from which to better understand various
individual and shared factors that limit drug policy research. These data were developed into a
“summary of constraints” and represent a significant set of problems that U.S. researchers commonly
identified as limiting their work. This summary document was then sent to all participants, so that they
had the opportunity to review the summary we prepared to ensure that the summary accurately
reflected their views, correct any misinformation, and/or add additional information.
Following the interviews, we shared the summary of constraints with participants and then asked
them to propose three key changes that would improve and transform U.S. drug research and policy.
From that set of factors, we devised a summary of improvements to the research environment. The two
documents, outlining constraints and potential improvements, became the foundation for a daylong
workshop on what kinds of research are most needed and, specifically, how to design and manifest a
more effective research agenda. Our goals for the meeting were to (1) work with the group collaboratively to create specific, actionable strategies for resolving research barriers, (2) articulate an aspirational list of research projects, and (3) highlight areas for immediate action.
In December 2017, 25 researchers met in Washington, DC, for the third phase of this project. This
group included most of the original interviewees (some were not able to attend) as well as additional
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participants selected to create a multidimensional, representational, and interdisciplinary group that
included one perspective external to the U.S. attendees represented all points in their careers, from
graduate students to emeritus professors and included a variety of perspectives involving quantitative
and qualitative research, public health and health-care practice, journalism, and policy-making. In
addition, the participants’ areas of expertise in research and practice focused on a wide range of topics
from various methodologies and represented the fields of anthropology, clinical psychology, criminology, cultural studies, epidemiology, geography, history, law, methodology/statistics, media studies,
medicine, public health, public policy, psychiatry, and sociology. Participants worked in various small
groups (both random and self-selected by topic) in addition to working together as a whole. Through a
two-part framework, we first asked participants to collectively build on the identified constraints to
clarify what factors would most transform those limitations. Then, in four smaller groups, participants
collaborated to create a list of projects that would form an aspirational research agenda. Finally, from
the latter list, participants self-selected into different topic groups briefly developed a multidimensional, ideal research project to disrupt current barriers in drug policy research.
The information generated from the meeting was recorded in extensive notes as well as through the
use of a graphic recording service, which translated conversations into images and text on large sheets
of paper as the meeting took place. Participants were invited to review and correct notes and the
graphic recording on-site as well as to comment on a summary of the proceedings provided to them
shortly after the meeting.
Moving Forward: Unbinding Knowledge
Participants in UBK generated a body of ideas about how to address current research constraints to
move U.S. drug policy forward. Most notably, the meeting highlighted the importance of working in
interdisciplinary research clusters to shape research design and outcomes across academic, organizational, public health, and health-care practice domains. Perhaps the strongest finding from the project
was the desire and need for more discussion of drug policy research across disciplines, with several
attendees noting how their own thinking and work had been deepened by just one day of being exposed
to other perspectives. The group came up with dozens of concrete suggestions that, while they may not
be new in a global context, have simply not been centered in the U.S. drug research environment: from
developing rapid response grants to deal with emerging drug-related crises, to studying polydrug use or
changing the outcomes measures used to assess drug treatment and other intervention studies. Some of
these recommendations may appear to be in tension with one another. For example, there was a strong
emphasis on the need to look at the effects of structural forces but also a recommendation for more
research on how individuals themselves manage drug use effectively. Such variations reflect a recognition of coexisting tensions between structural factors and the role of individual agency in drug use.
There is a need for drug research that can inform policies at multiple levels, from individual interventions to policy change, with a recognition of the reciprocal relationship between micro and macro
level forces. In a study that broadly explored needed areas for research, the recommendations focused
on gaps that, when informed with data, may produce different policy opportunities. Participants
acknowledged that, even as they push for visionary and sweeping change, incremental steps are needed
to get there.
We focus first on “Different Ways to Research,” recommendations that outline strategies to surmount systemic boundaries and limitations in the U.S. research environment, changes that would also
disrupt current research paradigms to generate more innovative projects. Next, we discuss “Research
That Would Change Drug Policy,” topics primarily related to the group’s efforts to work beyond the
individualist, prohibitionist, and addiction-focused frames in U.S. drug policy research. Specifically,
these recommendations call for broader levels of analysis and deepening research on substance use in
ways that challenge the narrow, but dominant, view of drugs as inherently dangerous. As a whole, this
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research outline has the potential to interrogate some of the primary myths and underlying fallacies of
the prohibitionist frame that Taylor, Buchanan, and Ayres (2016) identify, such as the belief that
substances are currently categorized according to some scientific rationale, drugs inherently cause
crime and social problems, continued drug use inevitably leads to addiction, and drug use has no place
in a civil society. Based on the constraints generated from our interviews, we would add the fallacy that
drug problems are fundamentally caused by individual behavior and choices as well as the failure to
widely study harm reduction interventions, self-regulated drug use, and policy-level interventions.
Different Ways to Research
The strongest consensus to emerge from the meeting was the need for new ways of working in U.S.
drug policy research. At the top of that list was the desire for interdisciplinary forums, such as the one
created by the project itself. Participants agreed that many significant barriers to actionable and
effective drug policy research are structural, including the mandate to work within a discipline (Campbell & Herzberg, 2017; Dunbar et al., 2010; Kushner, 2006, 2010). Further, the structure of academic
and for-profit funding, research, and publication distances researchers from the immediacy and impact
of policy on people who use drugs and their needs (Stein & Daniels, 2017). Putting a diverse group of
people from 15 different disciplines and all stages of career in a room together necessarily complicated
issues in productive ways. The impetus for UBK was a recognition that drug policy problems in the
U.S. are complex and multifactorial and as such, require deep thinking from multiple perspectives in
conversation with one another. Inviting participants to problem-solve across disciplinary and professional domains led to a critically robust and collaborative discussion of research issues and potential
solutions, including their immediate impact on people who use drugs and those who work with them.
Specific recommendations for improving the ways of doing drug policy research in the U.S. include
the following:
Build interdisciplinary partnerships (especially between qualitative and quantitative researchers). Academic
and professional silos, as well as the diverse and sometimes conflicting policy contexts of 50þ state
and federal arenas, limit our ability to understand and contextualize the research we conduct.
Multi- and interdisciplinary research is urgently needed. Many of the projects designed by the
UBK participants required interdisciplinary teams working together in multistage studies. Creating
pathways for those collaborations and partnerships is a critical first step. Identifying the most suitable
venues for this kind of work is a key second step. Research engaged across disciplines and organizations would lead to more nuanced ways of tackling both long-term and immediate needs (see also
Bourgois, 1999, 2002; Rhodes, Stimson, Moore, & Bourgois, 2010).
Redesign the research environment. The research process in the U.S.—from its structure, funding, design,
and publication—needs to be modified. Structures of funding, research incentives, and career demands
in academic and for-profit settings foreclose on the issues researchers might prefer to study, including
topics that they believe would contribute to better drug policy. Participants underscored the need for
publication outlets that serve policy-oriented outcomes, such as journals and other platforms that invite
multi- and interdisciplinary scholarship. Specifically, participants identified a need to challenge the
structure and incentives within academia to promote more innovative research as well as scholars’ role
in communicating to the media, the public, and policymakers—ideas that appear to be gaining more
currency in academia (Badgett, 2016; Daniels & Thistlewaite, 2016; Stein & Daniels, 2017). These
include strategies to teach and reward public scholarship and media work, develop forums for interdisciplinary work, and transform the peer review process to make it more constructive, rapid, and
interdisciplinary. They also recommended creating new publication outlets, such as additional policyoriented journals, journals for interdisciplinary and qualitative work, and accessible platforms for
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Contemporary Drug Problems 46(1)
public-facing scholarship about drug use and drug policy. These kinds of strategies would help push
past existing barriers, open up more space for critical drug studies, and encourage the development of
innovative research and policies.
Incorporate different types of expertise. Too much drug research employs assumptions and thinking
shaped by criminalization and stigma by researchers with little experience with drugs and/or exposure
to people who use drugs. Research should involve stakeholders as investigators (people who use drugs,
community members, etc.) across the spectrum from research design and data collection to analysis
and dissemination of findings (Lancaster et al., 2018). Among the potential benefits of such inclusion
are to identify areas for research unseen by people who do not use drugs, disabuse the research
community of such mischaracterizations, and lift the silence on talking freely about illegal drug use
practices—especially with regard to pleasure—and as a matter of social justice.
Diversify funding resources and objectives. Not surprisingly, participants had a number of recommendations related to funding. These included more funding for innovative and exploratory work, access to
rapid response grants, support for collaboration across disciplines (also across setting, research experience, or point in career), and backing for ethnographic and qualitative research as well as for
modeling and cost effectiveness research. In addition, participants noted the need to fund younger
or less-represented scholars—particularly women, people of color, and those impacted directly by the
war on drugs—who often bring a much-needed fresh perspective.
Work to reschedule drugs, such as cannabis and psychedelics, to promote research on their therapeutic uses.
Current drug schedules in the U.S. are problematic for a variety of reasons but particularly
because of the lack of research underlying their categorization of drugs. Research is needed
to address both the therapeutic uses and potential harms of substances impeded by these
misguided categorizations. A strategy to make Schedule 1 drugs more accessible for research
is essential to improve the knowledge base about scheduled drugs (see also Doblin, 2000).
Alter the metrics for intervention studies. In regard to intervention studies, the group recommended
focusing on outcomes beyond reductions in or cessation of drug use and recidivism, such as quality
of life, housing status, employment, family reunification, and client satisfaction and preferences.
Research That Would Change Drug Policy
In addition to changes in how drug researchers work and how the drug research environment is
structured, participants broadly agreed on content areas that require greater focus. Participants chafed
against the current emphasis in U.S. drug policy research on narrow, individualistic approaches that
fail to contextualize drug use, its harm, and the harms and benefits of the interventions we employ to
address it and how that focus contributes to a policy discourse that roots the solution to drug problems
in addressing individual pathology through either criminalization or medicalization. Similarly, they
commented on the relatively few studies that assess policy-level interventions or studies looking at
international issues, such as how U.S. policy impacts other countries and global drug policy, and
discussed the ways in which this gap may contribute to the failure of policymakers, the media, and the
wider public to fully consider the implications of the U.S. drug policy abroad. Overall, they called for a
broadening of perspective and scope, one that would necessitate the kinds of interdisciplinary
approaches described above. Recommendations for specific, much-needed areas of drug policy
research in the U.S. are as follows:
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13
Structural issues: Expanding the levels of analysis. As noted above, the majority of research on drugs in the
U.S. focuses on the level of individual drug use. These studies are critically important to understanding
who uses drugs and why, but they are insufficient for providing policymakers and the public the
information needed to respond effectively to drug problems. While the term “problematic use” can
itself be problematic, we are using it here to acknowledge that drug use happens on a spectrum ranging
from experiences that can enhance one’s functioning to those which can create substantive problems
(albeit often exacerbated by social circumstances). Participants urged more research on the structural
and social conditions (i.e., racism, network impoverishment, and other forms of oppression) that
contribute to problematic drug use and/or support abstinence or functional drug use. Social determinants of drug use have received some attention internationally (see, e.g., Spooner & Hetherton, 2005)
and in the U.S. (see, e.g., Galea, Ahern, & Vlahov, 2003; Galea & Vlahov, 2002). Although difficult to
measure and study (NRC, 2001), in part, because of the complex interplay of factors, tackling some of
the challenges of doing so could help us get to the root causes of problematic drug use, encouraging
policymakers to intervene further upstream. For example, how do access to housing, education,
employment, social cohesion, incarceration, or community institutions impact drug use? Researchers
in Canada, for instance, found that injection drug users with unstable housing were more likely to end
up in emergency departments and called for stable housing as a potential policy solution (Palepu et al.,
1999). Why do certain subpopulations in a particular region struggle more with resolving substance
use issues? For example, Gossop, Marsden, Stewart, and Treacy (2000), looking at routes of administration among people seeking drug treatment in England, found significant regional variations that
had implications for how policymakers and providers approached prevention and treatment as well as
for health officials’ distribution of services, such as vaccination hepatitis B. Through interdisciplinary
partnerships, between qualitative and quantitative researchers, participants projected ways to move
from broad structural issues to subpopulations about which we know very little.
To provide a more concrete example from the UBK meeting itself, one of the smaller UBK working
groups focused on the lack of research that examines how community- and structural-level factors
impact drug markets and drug use. They were interested in understanding how and why certain drugs
enter a community and whether or not there are community-level factors that deter the introduction of
drugs and/or their use once introduced. Why, for example, do some communities have high opioid
overdose rates, while others do not? Focusing on fentanyl, they suggested comparing two jurisdictions
with different overdose rates and examining a range of factors to better understand what factors impact
the market for and use of fentanyl. For instance, they would use mixed methods (qualitative and
quantitative) to examine the role of law enforcement, social services, housing and employment opportunities, and other factors. Working with historians, they would try to better understand the drug
markets, how new drugs are introduced to the community, and what political and community forces
might be at play. This research could lend insight into what kinds of policy and community factors
might impede or mitigate the introduction and spread of drugs within communities as well as harmful
drug use.
Just as we need to know more about the structural factors impacting sales and use, so too we need to
know more about the effectiveness of policy interventions at the macro level. While some studies are
emerging about marijuana legalization (see, e.g., Bachhuber et al., 2014; Cerdá et al., 2012; Pacula,
Powell, Heaton, & Sevigny, 2015), and there are a small number of studies about supply-side policies
used to address the opioid overdose problem in the U.S. (see, e.g., Baehren et al., 2010; Buchmueller &
Carey, 2017), participants encouraged more research and evaluation of policy interventions as they
unfold, including studies of “natural experiments.” Policy changes and practices beyond cannabis
legalization—such as Good Samaritan Laws, naloxone access, drug induced homicide prosecutions,
drug checking, expanded access to treatment—are being rapidly implemented, but studies of these
interventions and their effectiveness are scarce (see, e.g., Bardwell & Kerr, 2018).
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Contemporary Drug Problems 46(1)
Deeping and broadening understandings of substance use. Perhaps nothing has shaped U.S. drug research
more profoundly than the pervasive belief that illicit drugs are inherently harmful and addictive. The
pathologizing of drugs and the people who use them influences our assumptions about motivations for
drug use, the kinds of questions we ask, whom we study, and the outcomes we measure. Moreover,
these kinds of logics and discourse undergird the neoliberal project of governing pleasure as well as the
demonization and criminalization of those who use “demon drugs” (O’Malley & Valverde, 2004;
Race, 2009; Reinarman & Levine, 1997; Walker, 2017). The intense focus on the harms of drugs in the
U.S. has meant we know relatively little about their therapeutic and recreational uses or about the vast
majority of people who stop using drugs on their own (Granfield & Cloud, 1999; Sobell et al., 2000).
There were three areas identified for more focused research on substance use: self-regulating drug use,
the positive motivations for and outcomes of drug use, and better understanding of polydrug use.
Participants noted we have much to learn from the vast majority of people who use drugs functionally. In addition to structural factors, what is it about self-regulating drug use that might become part of
drug use education and harm reduction strategies? The potential benefits of studying normative drug
use and self-regulating drug use are enormous. They can lend insight into why and how most people
who use drugs can control their use and how many of those who cannot control use quit on their own
(natural or spontaneous recovery). Research topics would include what kind of calculations or incentives motivate people to regulate or stop use, what resiliency or assets do people have or need to
moderate drug use, and what motivates their use in the first place. By focusing on “problematic” drug
use, we have learned much about the problem but not much about preventing it or what might be the
most effective solutions. This area of research has great promise to lead us to new ways of approaching
more severe and consequential drug use as well as better understanding a broader spectrum of drug use.
One of the major artifacts of prohibition is that we have little research about why people use drugs,
the net benefit of drug use, and the outcomes sought by people who use drugs. Research that addresses
pleasure, life management, drug use for spiritual and health benefits, and so on, would begin to fill in a
cultural picture of the motivations for most drug use and allow policymakers to make more nuanced
decisions about how and why they intervene in the consumption of drugs.
While most people who use drugs do not use a single drug at a time, drug policy research in the U.S.
often isolates substance use by drug. People who use drugs may combine alcohol, opiates, stimulants,
and benzodiazepines—and often they are not even aware that some of these will interact with other
drugs. Indeed, some of the overdose deaths in the current opioid overdose crisis are the result of
polysubstance use—mixing opioids with a deadly combination of alcohol and/or benzodiazepines (Jan
et al., 2014; C. M. Jones & McAnich, 2015; Park, Saitz, Ganoczy, Ilgen, & Bohnert, 2015). The opiate
overdose crisis is just one example of a critical cultural and policy need for a better understanding of
polysubstance use. With the proliferation of novel psychoactive substances ranging from spice to
fentanyl, research on the short- and long-term health effects of using drugs in combination is urgently
needed. Additionally, more studies that collect ethnographic data about what drugs are actually being
used together, why, and in which contexts are needed.
Conclusion
The participants in UBK were emphatic that a better future for drug policy research in the U.S. requires
researchers who can work collaboratively across boundaries of discipline and profession to answer the
field’s most challenging and urgent questions. In a setting that itself attempted to model such collaboration, they articulated significant structural changes to drug policy research and conceptualized
projects that would meet crucial informational needs. Given the opportunity to work across disciplinary and organizational domains, participants were highly motivated to join forces to change the
conversation and transform research and policy in the U.S. With an understanding that the dominance
of prohibitionist logic permeates drug policy research, the participants wanted to commit to projects
Walker and Netherland
15
that would make the problems inherent in that framework more visible while providing better data to
address immediate needs. Collectively, they endorsed improvements to research contexts to, in turn,
build a better knowledge base.
We have highlighted just a few of the recommendations generated by the UBK project, and even the
full spectrum of ideas that came out of the meeting are just a gesture toward what U.S drug policy
research could become. We recognize that this was a select group that does not represent the drug
policy research community in the U.S. and that the discussion would have been even richer had we
been able to bring more international researchers to the table. Nonetheless, what the project demonstrated is both some of the problems with how U.S. research is currently conducted and the potential to
reimagine drug policy research by bringing people together across disciplines and supporting them in
thinking beyond the bounds that normally constrain them.
While we understand that changing such pervasive systemic and institutional factors will not
happen as a result of one project, we also recognize that the conversation needs to begin somewhere.
We share these findings in the hopes of furthering the dialogue about how to improve drug research in
the U.S.—by addressing both long-term challenges and offering ideas that may be addressed sooner as
low-hanging fruit. In fact, the group generated several suggestions for advancing this agenda. These
included using the findings to engage research funders—both public and private—in conversations
about supporting more visionary projects; fostering conversations within academia, the media, and
among policymakers about improving the field; instituting a recognition award to incentivize innovative, interdisciplinary projects; creating a virtual network of interdisciplinary critical drug scholars;
training researchers to engage more directly with policy and funding change efforts; and developing
additional forums for interdisciplinary work. Many of these suggestions are being taken up by the
DPA’s Office of Academic Engagement, which convened the UBK group. In addition, some participants plan to move ahead on the collaborations they conceptualized at the meeting—even absent of
additional funding and support.
It remains to be seen whether or not a small project like this can begin to shift entrenched systems
and beliefs in the U.S. that structure how drug policy research is funded and conducted. The prohibitionist frame and the pull to individualize the problem of addiction are strong in the U.S. and are being
bolstered in some ways by the current a political climate—including federal leadership that is dismissive of research in general. Nonetheless, there are also signs of tremendous opportunity, including a
new interest in more progressive responses to the opioid overdose problem, driven in part by the racial
politics of the problem (Netherland & Hansen, 2016, 2017), as well as what appears to be a resurgence
of interest in scholar-activism and the publicly engaged researcher (Badgett, 2016; Daniels & Thistlewaite, 2016; Stein & Daniels, 2017). If the enthusiasm and commitment of the UBK participants is
any indication, there seems to be a motivated cadre of critical drug scholars in the U.S. ready to work in
new ways and to shape a new research landscape—one that can do more to critically interrogate the
dominant and destructive ideologies that drive much of the U.S. drug policy.
The challenge remains to make the cultural changes that will help bridge disciplinary and organizational silos and support collaborative cross-disciplinary work to better inform and bring more rationality to U.S. drug policy. To that end, the project drove home the need for spaces and funding to
support interdisciplinary research networks and concrete projects, especially because so many of the
policy problems that need to be solved are multifaceted. Many of the most urgent and compelling
questions in drug policy can only be answered through interdisciplinary approaches, and yet there are
too few forums or incentives for researchers to engage in this way. The group recognized that to help
solve some of the country’s most vexing drug policy problems, we need collaborations that are not
supported by current research structures, funding, and outlets. In the spirit of the project, we invite a
conversation about how and where such interventions might already be taking place and where they
might be welcome.
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Contemporary Drug Problems 46(1)
Acknowledgments
The authors would like to thank the participants of the Unbounded Knowledge project and the staff of
the Drug Policy Alliance for sharing their ideas generously and for feedback on this manuscript. They
would also like to acknowledge Laura and John Arnold, the University of Washington and the Whiteley Center for supporting this project.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or
publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this
article.
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Author Biographies
Ingrid Walker is an associate professor of American studies at the University of Washington, Tacoma, where she
researches and teaches about the politics of contemporary culture in the United States, particularly critical drug
studies. Her book, High: Drugs, Desire, and a Nation of Users, addresses the social construction of drugs in the
U.S. Her TEDx Talk, “Drugs and Desire,” explores the stigmas surrounding psychoactive drugs, from caffeine to
hallucinogens. Her writing has appeared in the Journal of Popular Culture, NANO, publications of the Alcohol
and Drug History Association, and the edited volumes Conspiracy Nation and The Gangster Film Reader.
Julie Netherland is the director of the Office of Academic Engagement for the Drug Policy Alliance. In that role,
she advances drug policy reform by supporting scholars in doing advocacy, convening experts from a range of
disciplines to inform the field, and strengthening DPA’s use of research and scholarship in developing and
advancing its policy positions. She previously served as the deputy state director of DPA’s New York Policy
Office, where she was instrumental in passing two laws to legalize the use of medical marijuana in New York and
advancing a number of harm reduction and public health approaches to drug policy. She is the editor of Critical
Perspectives on Addiction (Emerald Press, 2012). More recently, her work with Helena Hansen, MD, PhD, on the
racialization of the opioid epidemic has appeared in the American Journal of Public Health, BioSocieties, and
Culture, Psychiatry and Medicine.
Journal of Cancer Policy 27 (2021) 100265
Contents lists available at ScienceDirect
Journal of Cancer Policy
journal homepage: www.elsevier.com/locate/jcpo
Gastrointestinal cancer prevention policies in Iran: A policy analysis of
agenda-setting using Kingdon’s multiple streams
Neda Kabiri a, Rahim Khodayari-zarnaq a, Manouchehr Khoshbaten b, Morteza Arab-Zozani c,
Ali Janati a, *
a
Iranian Center of Excellence in Health Management, Department of Health Policy and Management, School of Management and Medical Informatics, Tabriz University
of Medical Sciences, Tabriz, Iran
Liver and Gastrointestinal Disease Research Center, Tabriz University of Medical Sciences, Tabriz, Iran
c
Social Determinants of Health Research Center, Birjand University of Medical Sciences, Birjand, Iran
b
A R T I C L E I N F O
A B S T R A C T
Keywords:
Gastrointestinal cancer
Agenda setting
Kingdon’s multiple streams
Prevention
Iran
Background: Gastrointestinal cancers continue to claim the lives of thousands of individuals. Fortunately, primary
prevention, which focuses on interventions to change unhealthy lifestyle behaviors, can lessen the negative ef­
fects and decrease the economic burden of these cancers. The purpose of this paper is to assess the likelihood of
adopting gastrointestinal cancer prevention policies through the lens of Kingdon’s theory of agenda setting.
Methods: A qualitative study was conducted using document review and face-to-face interviews with 22 key
informants from different stages of the policymaking process of gastrointestinal cancer prevention program in
Iran. We used purposive sampling. Our analysis of documents and interview were guided based on Kingdon’s
multiple streams (problem stream, policy stream, and political stream).
Results: Based on the results of this study the important factors of problem stream are as below. The high cost of
gastrointestinal cancer diagnostic services dramatically affect patient’s financial affordability to essential cancerrelated services. Consequently, most of the cancers show distant metastasis at the time of diagnosis, imposing
catastrophic expenses to patients, society, and the health systems. In the policy stream, participants mentioned
the importance of the cancer registry system in the country that provides a clear source of information for
decision-makers to plan for early diagnostic services. Under the political stream, the national and international
supports provide a favorable climate for this issue.
Conclusion: Now that a window of opportunity for gastrointestinal cancer prevention policymaking is created,
there is a need for greater efforts to strengthen the inter-sectoral collaboration. The presence of the policy en­
trepreneurs during this period can press for policy change, however, actors need political support from the
highest level of the governance to push this issue on the agenda.
Policy summary: This paper is seeking to have impact on the policies related to prevention of gastrointestinal
cancers in Iran.
1. Introduction
Gastrointestinal cancers (GIC) pose a serious health threat that
claims the lives of thousands of individuals annually around the world
[1]. Five types of GIC, including colorectal, stomach, esophageal, liver,
and pancreas, are among the top 10 cancer types in terms of mortality
and incidence for men and women in the world [2]. Cancers of the
gastrointestinal tract are developed through the accumulation of risk
factors, including those that an individual can’t control such as genetic
* Corresponding author.
E-mail address: janatia@tbzmed.ac.ir (A. Janati).
https://doi.org/10.1016/j.jcpo.2020.100265
Received 7 November 2020; Accepted 14 December 2020
Available online 16 December 2020
2213-5383/© 2020 Elsevier Ltd. All rights reserved.
factors, age, ethnicity, blood type, and family history of cancer; and
modifiable risk factors, including lifestyle and environmental-related
factors [3,4].
Cancers of the gastrointestinal tract exert heavy financial burdens on
patients, communities, and the health systems across the globe. The
annual inpatient cost of GIC (gastric, colorectal, and esophageal) in
China was estimated at 4.44 million USD in 2013 [5]. Taiwan reported
total cost (direct medical costs, direct non-medical costs, morbidity
costs, and mortality costs) of 423 million USD for advanced gastric
N. Kabiri et al.
Journal of Cancer Policy 27 (2021) 100265
cancer in 2013 [6]. Fortunately, primary prevention which focuses on
interventions to change unhealthy lifestyle behaviors can lessen the
negative effects and decrease the economic burden of these cancers.
Addressing these lifestyle behaviors, the 66th World Health Assembly,
endorsed the “WHO global action plan for the prevention and control of
Non-Communicable Diseases (NCDs) 2013− 2020” [7]. Nine global
targets, including a 25 % relative reduction in premature mortality from
NCDs by 2025 were specified in this action plan. With a commitment to
achieve the objectives of WHO global NCDs action plan, the Ministries of
Health (MoH) in countries issued their national programs for control and
prevention of NCDs [8–11].
At the same time, following a tremendous increase in death from GIC
especially, in the Asian belt of esophageal cancer that stretches from the
eastern part of the Caspian littoral in Iran via Turkmenistan to the
northern provinces of China [12], countries of this region started to
develop policies and strategies to tackle this issue [13,14].
Population-based cancer screening programs also was considered as a
major public health intervention by policymakers across the world. Most
of these programs target colorectal cancer due to the slow progress of
this cancer, in which, Fecal Immunochemical Test (FIT) was determined
as an initial screening test followed by diagnostic colonoscopy for those
with a positive FIT result [15,16]. Despite the introduction of several
policies, the death from GIC is still increasing [17–20]. Even though GIC
prevention policies have the potential to improve health outcomes, it is
essential to bear in mind that the political will from the highest level of a
government, as well as policy championship by the elite actors, is crucial
in not only pushing the issue on the agenda but also implementing the
policies [21].
solutions developed for a situation. Finally, the political stream indicates
how national and international climate and social pressure influence
whether or not an issue emerges on the agenda. When all of the streams
converged, and advocacy of policy entrepreneurs was present, a window
of opportunity will be created [23]. Fig. 1 indicates the Kingdon’s
multiple streams framework.
The purpose of this paper is to identify the existence of these three
streams and assess the likelihood of placing a policy for GIC prevention
on the agenda.
2. Methods
Using Kingdon’s agenda setting framework, this qualitative case
study explores the principle factors influencing the problem stream of
GIC, the solutions to address GIC, and the political events that affect the
emergence of GIC prevention policies.
2.1. Document review
Background information regarding the uptake of policies for GIC
prevention was gathered using document review. Government reports,
scientific literature, minutes of meetings, and newspaper articles were
searched. First, the peer-reviewed publications were retrieved searching
databases of PubMed and SCOPUS. Second, the available governmental
reports were identified searching the web pages of the Iranian govern­
ment agencies, MoH, Medical Sciences Universities, and related research
centers. Third, the minutes and meetings for the ‘Supreme Council for
Health and Food Security’ and ‘NCD committee of MoH’ were manually
searched and retrieved. Google search engine was also searched to cover
any other related content.
1.1. Conceptual framework
We adhered to one of the most widely used models of agenda setting
(Kingdon, 1984) as a framework for analysis [22]. Agenda setting is the
first stage of the policymaking process, during which an issue gets the
policymaker’s attention and rises into the agenda. According to King­
don, a policy emerges on the formal agenda, when three streams
–problem, policy, and political- converge. The problem stream refers to
issues faced by policymakers. Statistical indicators, policy reports, and
pressure from the advocacy groups usually draw policymaker’s atten­
tion to the problem. The policy stream describes a set of proposals and
2.2. Key informant interviews
Semi-structured interviews were conducted at the interviewee’s
workplace by an experienced female researcher who was PhD student in
health policy at the time of the study. A total of 22 key informants were
interviewed (14 men and 8 women), 12 of whom were from different
levels of MoH. The other 10 participants were from the Ministry of
Education, Ministry of Agriculture Jihad, Ministry of Industry, Mine and
Trade, Ministry of Sport and Youth, Islamic Republic of Iran
Fig. 1. The Kingdon’s multiple streams framework.
2
N. Kabiri et al.
Journal of Cancer Policy 27 (2021) 100265
Broadcasting, Department of environment, Standard organization, and
cancer-related NGOs. We sought to include actors of different sectors
ranging from the highest level of policymaking to the lowest level of
caring for the cancer patients. The interviews took place between April
and November 2019. Purposeful sampling was used to identify key in­
formants, following by a snowball technique. The objectives of the
research, as well as the reasons and interests in the research topic were
first described to the participants. All interviews were conducted face-toface and were tape-recorded following informed consent. As an excep­
tion, one of the participants refused to have face-to-face interview
because he was too busy and answered to our questions in writing. Most
of the interviews were conducted without presence of any other
participant or researcher, unless interviewees had another roommate.
Interviews were conducted and lasted between 30− 45 min. Also, handwritten notes were taken throughout interviews. Transcripts returned to
the participants for checking the accuracy where applicable. The process
of interviewing was continued until the theoretical saturation of data.
We used a topic guide that was designed based on the Kingdon’s mul­
tiple streams theory. The topic guide was pre-tested in three interviews,
and based on the results from the analysis, some small changes were
made to the topic guide. The following questions were asked:
4. Problem stream
High prevalence and mortality of the GIC in Iran
The main problem which draws attention to researchers and poli­
cymakers was the high prevalence and mortality of GIC in the country. A
recent study revealed the high age-standardized incidence rate of GIC in
North part of Iran (100.2 per 100,000 person/year) [24], which was
much higher than the data from a global research (40/100,000 for
colorectal cancer) [25]. According to a respondent, due to the high
prevalence of GIC, different policymakers during past times have tried to
shift the GIC from a condition into a problem. However, none of them
continued mostly because of the political instability and changing in­
terests among different policymakers.
“Regarding that GIC has always been one of Iran’s health priorities,
policymakers paid more attention and tried to develop policies on this
issue. However, they all stopped and remained in the pilot phase.”
Participant 3
4.1. The changing prevalence of GIC risk factors
A dramatic shift to the westernization of lifestyle has occurred in
recent decades. Lifestyle-related factors of GIC, including unhealthy
dietary habits, smoking, alcohol consumption, and less physical activity,
along with the environmental and socioeconomic factors, contribute to
the main risk factors of GIC [26]. People have sedentary lives now and
consume more unhealthy foods, including red and processed meat [27].
The prevalence of insufficient physical activity among Iranian adults
was 54.7 % in 2016 [28], more than that of the global level (27.5 %) in
the same year [29].
1 Problem stream: What are the unresolved issues around GIC in Iran?
2 Policy stream: What are the solutions adopted by different organi­
zations to address GIC-related issues in Iran?
3 Political stream: What are the political factors that have an impact on
GIC prevention policies in Iran? Is there political support form the
highest level of government for GIC prevention policymaking in
Iran?
2.3. Data analysis
“Colorectal cancer is becoming increasingly high because of its increased
risk factors: fast food use, inactivity, and obesity.” Participant 15
Data were analyzed using MAXQDA version 10. Initially, all tran­
scribed interviews and documents were read and re-read to reach
familiarization. Then, all collected materials were open-coded inde­
pendently by two authors and categorized by the similarity of their
content. The difficulties in coding and categorizing were discussed by
the two authors (NK and RK). Themes were then derived from catego­
rized codes, guided by the Kingdon’s description, including problem
identification, policy solutions, and political opportunities.
Lack of cancer diagnostic and treatment medicine and facilities
The high cost of GIC diagnostic and screening services and less
coverage of these services by the insurance companies, dramatically
affect patient’s financial affordability to essential cancer-related health
services. At the same time, the public sector, due to the lack of financial
resources, is unable to provide sufficient diagnostic and screening ser­
vices including imaging technologies, or if sufficient, the services are
unevenly distributed, concentrating in the provincial capitals. This rai­
ses a serious issue regarding the patient’s physical accessibility to cancer
diagnostic services in rural Iran. Consequently, most of the cancers show
distant metastasis at the time of diagnosis, imposing catastrophic ex­
penses of surgery and chemotherapy to patients, society, and the health
systems.
2.4. Rigor of the study
We included participants from different levels of the policymaking
hierarchy to increase conformability of the study. To ensure the reli­
ability of extracted codes and themes, inter-observer reliability was
used, and disagreements were resolved through discussion. Also, peer
check was done by sharing extracted themes with other co-authors and
asking their comments. A member check was done after each interview,
showing the notes and asking what was understood from interviewees.
Collecting and analyzing the data were conducted simultaneously.
“…About colorectal cancer, they said that because we don’t have enough
resources, it is better to include just individuals with a family history of
cancer in the screening programs…. But you know, indeed, only 30 % of
all cancer patients have positive family cancer history. Hence, we missed
the remaining 70 %.” Participant 6
“…For example the public sector can’t facilitate enough colonoscopy de­
vices all over the country. Let’s ask NGOs for help, to have colonoscopy
device and gastroenterologist anywhere. Even one visit in a month is
sufficient for the rural patients”. Participant 12
2.5. Ethical issues
The study was approved by the ethics committee of Tabriz University
of Medical Sciences (IR.TBZMED.REC.1397.618). Signed informed
consent was obtained from the key informants at the beginning of the
interview. Also, interviewees were free to withdraw from this study at
any time for any reason. Participant’s quotes were fully anonymized by
removing the information about their position and profession.
4.2. International sanctions against Iran
3. Results
There are growing concerns regarding the impacts of various sanc­
tions programs against Iran on the health of the Iranian population
especially patients suffered from cancer. These sanctions indirectly
target Iran’s access to medicine, making them rare and too expensive for
most cancer patients and households.
The results are structured according to the problem stream, policy
stream, and political stream. When applicable, data from documents are
presented.
3
N. Kabiri et al.
Journal of Cancer Policy 27 (2021) 100265
“In the field of cancer, we all know that people are in trouble. Interna­
tional drug sanctions have the most negative impact”. Participant 21
studies, named “Gastric and Esophageal Malignancies in Northern Iran
(GEMINI)” [35]. He has an important role in providing high-quality
evidence on this issue. Also, he has a wide international relationship
and can mobilize the financial supports of international organizations to
push for policy change.
5. Policy stream
“Policymaking starts with incentives. Fortunately, there is a very inter­
ested person in the MoH that helped us….” Participant 19
The policy stream highlights how solutions can address the GIC
prevention. Respondents noted the following: cancer registration sys­
tem, health information systems, health and food security working
groups, elites and interested academicians, and cancer control
coalitions.
Commenting on the results of the GEMINI study, an informant added:
“Overall, we concluded that esophageal cancer has seven risk factors that
can all be prevented… So the first thing we need to do is prevention.”
Participant 11
5.1. Cancer registration system
The cancer prevention practice initially emerged after the law of
“compulsory cancer registration” was passed in 1984. Based on this
constitution, pathologic centers (public, private, and nongovernmental), hospitals (public, private, and non-governmental), and
death registration centers in health deputy are forced to report the
diagnosed cancers. Physician’s officials, imaging centers, insurance
companies, and any other center that probably will meet the cancer
patients can be a source of information for the cancer registry system
[30].
5.5. Cancer control coalitions
Cancer control coalitions provide activities to the population for
enhancing awareness about cancers, prevention, and early detection.
Cancer control coalitions often consist of volunteers from universities,
NGOs, and advocacy groups. Several events in especial days of the year
are organized in schools, universities, and workplaces by cancer control
coalitions.
“We have global colorectal cancer day in May, dedicated to colorectal
cancer nationwide..” Participant 7
“Practically, what can be said is that cancer control activities start with
the registration of cancers and the causes of death.” Participant 2
6. Political stream
5.2. Health information systems
6.1. Support from supreme leader
By 2015, the MoH launched a comprehensive, integrated national
health information system to provide health-related information of the
population to improve the quality of health services. Despite many
structural challenges and low usability of health information services
[31–33], respondents said the system had resulted in establishing a basis
for evidence-informed decision making.
The highest level of governance in Iran (Ali Khamenei) mostly shapes
the political climate of the country about an issue. This person can
disseminate, advocate, and mobilize support and resources from
different stakeholders and establish collaboration among sectors in
order to adopt and implement cancer prevention policies. In 2014, the
supreme leader announced the “Overall policies for health” [36], in
which, the focus on prevention rather than treatment was obvious.
“All the health information that is provided in this system will be available
online to serve health workers and individuals at different levels.”
Participant 14
6.2. International influences and support
5.3. Health and food security working groups
Since the “Global action plan for the prevention and control of NCD
2013− 2020” [7] developed by WHO, several countries initiated their
national program for control and prevention of NCDs [37–40]. Iran was
not an exception [11]. The early draft of the Iranian national action plan
was discussed in the meeting of the WHO regional office in Beirut.
Passed in 2008, health and food security working groups were a legal
framework defined to reinforce inter-sectoral collaboration. The hosted
super department i.e., the Supreme Council of Health and Food Security,
is at the national level and chaired by the president. Commenting about
the role of these working groups, an interviewee stated:
6.3. Change in the government
“Its purpose was to bring together organizations that are somehow related
to health and make decisions.” Participant 8
With the change in government in 2013, a great influence had shown
over the preventive activities. In 2015, a committee with the leadership
of the head of the MoH, Dr. Hashemi, was assigned as being in charge of
developing the national action plan for the prevention and c…
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