Category Archives: Public Policy

Reflections on the struggle for the right to health

My journey to the fight for the right to health stems from a personal health experience: as a three-year-old, I almost lost my left kidney due to infection caused by a congenitally blocked ureter. But, because of the heroic advocacy of my parents, and the resources we had available to us, I was able to receive the reconstructive surgery necessary to repair the damage and save my kidney.

Because my story is the exception, not the norm, I’ve become veritably obsessed with political, social, and economic forces that systematically exclude the vast majority of humanity from access to the care they need to live. Why is it that effective surgical intervention is reserved to the top 1% of humanity? Why is it that I, a privileged white, wealthy, cis-gendered, straight man, am nearly guaranteed a life of comfort and freedom, despite a nearly life-ending congenital illness as a child? Why is it that if I had been born into another body, or in another place, I’d likely not be alive to write these words?

We know the answer: most humans on the planet are deeply constrained by intersectional forces of grinding poverty, racism, sexism, homophobia, and democratic exclusion. Paul Farmer and others have termed this ‘structural violence:’ the violence that seems to have no individual perpetrator–it appears to be all around us, yet not advanced by any of us in particular–that causes the systematic and unnecessary death of the poor, excluded, marginalized, different.

Today, though, we have a name to put to structural violence. It’s called the GOP-led efforts to repeal the ACA and dismantle the only safety-net healthcare program in the U.S. aimed at enabling the poor and disabled to gain access to healthcare: Medicaid.

And, we have a perpetrator. 51 one of them, in fact. Sen. Mitch McConnell’s efforts to destroy healthcare for the poor, and his craven band of greedy sycophants disguised as public servants, are guilty of structural violence. We know what will happen if they get their way: 31, 16, or 15 million people will lose health insurance depending on which of their undemocratic bills pass. Most of these people will be poor, elderly, disabled, or children with severe health problems. Tens of thousands of unnecessary deaths annually can be predicted as a result.

This is structural violence with a face. It’s happening in real time, in front of all of us. We watch in horror at our Twitter streams or our Facebook news feeds at the latest news from Washington. We applaud and click the “like” button for our friends who share progressive articles cheering distant protests with arrests, sobbing, and screaming. And we go about our day, even if a little shaken.

All of this brings up another question: what obligation do we have to ACT? As people claiming the mantle of health and human rights workers, what responsibility do we bear to stand up and actively fight back against the obvious perpetrators of structural violence?

I would argue that for those of us making strong claims about the right to health comes great obligation to fight to protect and realize those rights. Certainly, this fight must come in many forms. But, it also certainly involves more than the ongoing clicktivism that we so often see as our primary mode of action.

I’ve made the 10-hour bus ride to DC and back on three separate occasions in the last three weeks, doing all that I can with my body, my money, and my effort to stop this heinous and undemocratic attempt to destroy healthcare for the poor. I don’t say this to be self-congratulatory.

I say this because my efforts have paled in comparison to members of the disabled community. Members of ADAPT, mostly wheelchair users with significant disabilities camped outside in front of the Russell Senate Office Building for three-straight nights and days, in the pouring, thunderous rain, to be seen and heard. They chained their chairs together in defiance of the Capitol Police in the center of the Hart Senate Office Building, sending their own thunderous roar through the halls of Congress. They did this because they knew it was life or death for them.

I say this because my efforts have paled in comparison to members of the LGBTQ community. Gay, lesbian, and transgendered people are leading this fight, putting their bodies on the line, getting arrested in civil disobedience, and putting themselves through the real risk, cost, and humiliation of jail time. They did this because they know what is at stake, having lived, or at least heard tales, of the fights of the 80’s and 90’s in the AIDS treatment struggle. And, they are facing the realtime threats of this administration in the ongoing fight for LGBTQ civil rights. Their heroism, borne of self preservation, protects us all.

I say this because my efforts have paled in comparison to the efforts of people of color: A mother, her teenage daughter, and their aunt from Georgia made the trek to D.C. because of their need to access to mental health and diabetes medicines to survive. An elderly man from Kentucky who needs support for his blood pressure medicine. Each on Medicaid and limited income, they are desperate to see these repeal efforts fail. And so, they are the ones turning out, showing up, and laying it all on the line.

Our community needs to be doing more. When I say, “our community,” I know that it’s a fraught term. But, let’s say the “health and human rights community.” We have resources, some time, and a hell of a lot of privilege and power at our disposal. I know that there are a million challenges and problems that we are dealing with on a nearly daily basis–our solidarity efforts in clinics and offices here, or in Rwanda, Sierra Leone, and Haiti will be ever present–but when clear and readily apparent structural violence is being advanced in front of our eyes, are we not obligated to act?

The only cure for structural violence, as Paul Farmer would say, is pragmatic solidarity. It’s about making common cause with the suffering and doing what needs to be done, as it’s needed, to practically advance their needs and demands.

This is a moment for pragmatic solidarity in America. And pragmatically, this means standing together in direct, non-violent, political action against the named perpetrators of structural violence: the leaders of the GOP.

The evolving structure of a scientific citation network and its political effects

1) Introduction

Existing literature describes academic citation networks and the structure of knowledge fields: their diverse patterns, clustering, fragmentation, structural cohesiveness, and the link between micro and macro level processes in emerging domains of scientific knowledge production (Small & Griffith, 1974; Hill & Carley, 1999; Gondal, 2011; Daipha, 2001). However, little has been written to describe the specific structural changes over time of citation networks. How do certain nodes emerge and become central or structurally important over time? How and why do other nodes, important early in the citation network’s evolution, become far less important as the network matures? What are the macro and micro level processes that describe and govern this behavior and what social, epistemological, and political lessons can we draw from these changes?

These questions are important for growing our theoretical understanding of evolving scientific domains of knowledge. Practically, these questions are also important to explore the biopolitical dimensions of evolving hegemonic scientific domains and the constraints they place on practitioners making use of domains of scientific knowledge. A central notion in the sociology of health and medicine is the social construction of illness. Sickness, disease, and health problems are simultaneously materially located biological phenomena and a socially created meaning making processes through which normalcy and deviance get defined and play out in socially relevant displays of power and inequality. Some illnesses are particularly embedded with cultural meaning, others are socially constructed at the individual level–based on how individuals come to understand and live with their illness. Others are especially shaped by technical medical and scientific knowledge and are not necessarily given by nature but are primarily constructed and developed by claims-makers and interested parties (Conrad & Barker, 2010).

Additionally, the process of medicalization—the tendency to inscribe more and more social problems to be within the professional domain of medicine—continues to be a dominant trend in society. By expanding the medical domain to ever more issues and social problems, the challenges and conflicts associated with naming and framing illness comes to the fore. Rather than a given biomedical fact, we have a set of understandings, relationships, and actions that are shaped by diverse kinds of knowledge, experience, and power relations, and that are constantly in flux. This social constructionist perspective looks at how the phenomenon was identified and acted upon. Diagnosis is a matter of the “politics of definitions” (Brown, 1995).

Though medical sociology has given great attention to the complexities and power-processes associated with naming, diagnosing, and building systems to care for diseases at the population level, less attention has been paid to the ways that the structure of academic literature, and the citation networks that represent them, contributes to the processes of naming, framing and governing of illness. This paper looks at the structural evolution of the academic literature that deals with the intersection of noncommunicable diseases and “global health.” Historically and currently, both the terms “global health” and “noncommunicable diseases” (hereafter, NCDs) have been hotly contested (Airhihenbuwa et al., 2014; Whyte, 2012; Fassin, 2012; Beaglehole & Bonita, 2010). Both the broad and diffuse concept of “global health” and seemingly technical and clinically delimited field of noncommunicable diseases demonstrate the ways in which medical and scientific knowledge is socially constructed in complex ways (Keane, 1998; Brown, 1995; Lantz & Booth, 1998). The framing of NCDs in the global policy literature, in particular, has been a battle ground of biopolitics (Bukhman et al., 2015; Binagwaho et al., 2014; Katz, 2013; Mamudu et al., 2011).

Building off the current literature, I visually examine the changing structure of the global health / NCD academic literature citation network as well as quantitatively explore the changes in some of the macro-level characteristics of the citation network and their changes between 1995 and 2016. Additionally, using ERGM techniques, I also find evidence in support of important changes in the density and the emergence of a small number of structurally important paper / nodes in the network.

To conclude this paper, I will explore how structural changes in this citation network correspond with the content of the papers that dramatically change their structural position within the network. By linking this to a historical understanding of the changing framing of NCDs in the global policy making domain, I hope to make the argument that structural changes in the NCD/global health citation network shaped the framing for and contributed to limiting the political opportunities available to activists seeking to mobilize new resources for the growing NCD burden amongst low income populations globally.

2) Research Question

More concretely, I hope to answer the following questions: 1) How do the global characteristics of the NCD/ global health citation network change, qualitatively and quantitatively, between 1995 and 2016? 2) What were the most important micro-level structures that caused macro-level changes in the network over that time period? What historical, social, and political effects could these structural changes in the network both represent and perhaps be causing in the broader field of global health governance?

3) Data and Methods

Research focused upon the structure of knowledge production frequently relies on network data (Gondal, 2011). As Gondal describes,

“The nodes in the network may be researchers, documents, concepts, or organizations. The edges connecting these nodes correspondingly are collaborative authorship (Babchuk et al., 1999; Moody, 2004; Goyal et al., 2006), social and intellectual contacts between scientists (Lievrouw et al., 1987), co-occurrence of references in the bibliographies of other documents or co-citation (Small and Griffith, 1974; Moody and Light, 2006), shared citations of the same other documents or authors also known as bibliographic coupling (Kessler, 1963), sharedmem- bership in organizations (Cappell and Guterbock, 1992; Daipha, 2001), or conceptual similarity between documents (Small, 1978; Lievrouw et al., 1987; Hill and Carley, 1999). The analysis of such networks constructed from citation indices, organizational memberships, and authorships is largely conducted at two levels. At the dyadic level, researchers have been concerned with the meaning attributed to the edges interlinking the nodes. At the ‘global’ or ‘macro’ level, researchers analyze the topological properties of the network as a whole providing a bird’s-eye description of the research field. There is yet another level – the ‘local’ or ‘micro’ level – involving more than one tie but significantly less than the complete network which remains relatively under-analyzed in the literature.”

In this paper I attempt to show not only the birds eye view of how this citation network grows and evolves over time, but also how the micro-level structures that cause ties change evolve over time as well. I accomplished this by building a plain .txt citation data set from Web of Science (webofknowledge.com) querying the database and downloading all relevant citation and paper data for the papers meeting the search criteria. My criteria for this search were a) any of the diseases listed by the Institute for Health Metrics and Evaluation as a “noncommunicable disease” (each with logical ‘or’), AND b) the term “global health”, c) between the dates of 1995 and 2016. I then used the CRAN “bibliometrics” package, downloaded to RStudio to transform this plain text data file into an adjacency matrix (see Appendix 1 for R code). From there, I was able to generate the annual graphs of the growing NCD / global health citation networks and their corresponding betweenness, closeness, and degree statistics. I additionally used the VOSViewer software for mac to further explore the structure and patterning qualitatively for the network. Finally, using the CRAN ERGM package in R, I ran ERGM models, testing for the log likelihood of the presence or absence of various important micro-level structures that may or may not be present in the given networks and may or may not change over time. Overall, this data set give me a useful view into both the micro and macro level structures and patterns within the global health / NCD citation network, but it also gives me good resolution as to how those network properties have changed over time.

4) Results

4.1 Global Properties of the Network

Figure 1 visually shows the evolving NCD / global health citation network over time, between 1995 and 2016. We see the network going from a mere handful of papers in 1995 to a seemingly very densely packed mess of papers, citations, and nodes in 2016. Nodes are slightly expanded based on their degree number (number of papers citing that paper) and so we see, starting in about 2001, the emergence of some “key nodes”—or papers that seem to be growing quickly in the number of citations that they are receiving from other papers in the network. Starting at about 2006, we see a significant density pattern towards the bottom of the network graph.These patterns are more easily visualized in the VOSViewer software. Using this visualization software, it is easy to see the breakdown of papers, the authors, their topics, and the conceptual/issue area/disciplinary clustering. Figure 3 shows the results of the visualization of the NCD / global health citation network in 2016 via the VOSViewer. Here we see that it has grouped the important nodes in the network into disciplines / areas of research based on the number of shared citations. The blue region represents papers concerned with global mental health issues. The green region represents pulmonary disease, heart disease, and epidemiological studies focused on lifestyle risk factors and population level public health intervention. The red region has to do with chronic pain issues, arthritis, and other rheumatic diseases. Finally, the yellow region represents papers that have to do with various forms of cancer. It is interesting to note that papers of similar topic and clinical area tend to group together.

Another interesting finding from this analysis was the see the rapid growth in importance of large scale epidemiological modeling and burden of disease measurement papers at the expense of more clinical/intervention focused papers. Specifically, the papers by Murray, Jemal, and Lozano are all large scale quantitative epidemiology papers aimed at measuring different components of the noncommunicable disease burden across the globe. This corresponds to some of the other the important findings in terms of changing structural importance within the network, which we I will discuss shortly.

4.2 The Changing Network Over Time

In addition to visually seeing the evolution of this citation network over time, I also wanted to explore some key network statistics—particularly different measures of centrality—of the papers in the network, and how those changed over the evolution and maturation of the citation network. Figures 3, 4, and 5 show all of the networks papers’ betweenness centrality, closeness centrality, and degree between 1995 and 2016. Betweenness centrality refers to the number of actors that must “pass through” a given node in order to reach other nodes. More technically, “if the geodesic between actors n2 and n3 is n2n1n4n3 — that is, the shortest path between these actors has to go “through” two other actors, n1 and n4 — then we could say that the two actors contained in the geodesic might have control over the interaction between n2 and n3” (Wasserman & Faust, 1994, p. 188). This “actor in the middle” has some degree of control over the graph, hence it is an important statistic to quantify. Closeness centrality focuses on how close an actor is to all the other actors in the set of actors. The idea is that an actor is central if it can quickly interact with all others (Wasserman & Faust, 1994, p. 183). Lastly, degree simply refers to the number of edges connected to a given node. In this case degree is equal to the number of papers citing a given paper in the network.

Viewing Figures 3, 4, and 5 together reveals an interesting and striking pattern. First, in Figure 3 we see betweenness centrality unfailingly, yet unequally increasing for all papers in the network. Figure 4 shows conversely that paper’s closeness centrality unfailingly decreases over the time period observed, but again at slightly different rates. Finally, Figure 4 shows that degree appears to go up for all papers in the network, again at dramatically different rates across this citation network.

These observations demonstrate an interesting conclusion for this network: that betweenness and closeness appear to be inversely related to one another over time as a citation network grows over time. Practically, what this means is that as papers continue to be added to the scientific network space of global health / NCD research, they are increasingly citing seminal papers and making connections with other, less cited papers in the network. This rapidly growing, but relatively sparsely connected network creates more and more betweenness for each paper—there are more steps through the networks through which to go and therefor each paper in those steps are between ever more papers. But, at the same time, papers are being added to the network at such a rapid rate (and papers can only cite so many other papers) that network is becoming increasingly less dense and therefor the closeness of the papers within the network shrinks dramatically, especially starting around 2000. Finally, it also makes sense that in general, the degree for papers in the network would grow consistently over the course of the evolution of this citation network. Papers, even those rarely cited, will only grow in their number of citations and won’t decrease.

Table 1 (to be discussed more below) shows the number of papers in the network for each year: there is an almost exponential addition of new papers to the network starting around 2002. Given this explosion of new nodes being continually added to the network, the relatively few citations any one paper can have, it makes sense that closeness centrality would plummet over the course of the evolution of this network and that betweenness within the network would increase as the sparsely—yet still completely connected—network continues to grow.

4.3 Differential Eigen Centrality Trends

So, over time, the NCD / global health citation network seems to both be growing in terms of its overall size, the number of citations, and therefor its average betweenness of the papers in the network. Conversely, the network is becoming far more sparsely connected because of the sheer rate of addition of new papers and the limited numbers of citations that each paper can make (see Figure 10). What about the importance of particular papers? Are there specific papers (or groups) that seem to be becoming more or less important in the network despite the rapid expansion of the network itself?

Eigenvector centrality is one such measure of importance or influence within a citation network. It assigns relative scores to all nodes in the network based on the number connections and quality of the scores of the connections a node has. The more important the node’s connections, the higher that node’s eigenvector centrality will be (Newman, 2014). We might hypothesize that similar to the betweenness measure, all papers would tend to become more important within the network over time. Or, conversely, perhaps, eigenvector centrality would tend to decrease rapidly with the rapid increase of the size of this citation network. Puzzlingly, neither seems to be the case: Figure 5 seems to show that some of the papers in this citation network are increasing in their eigenvector centrality score between 1995 and 2016, while other papers in the network decrease in terms of eigenvector centrality over this time period. How can we account for this?

It seems that there is some pattern—some papers increase in eigenvector centrality while other papers decrease in eigenvector centrality—over the time period observed. But, what is the relationship between the papers that tend to increase or decrease in relative importance / influence in this network over time? To explore this, using R (see code in Appendix 1) we separated out the papers that had increasing eigenvector centralities and those with decreasing eigenvector centralities. Figures 6 and 7 show the plots of the increasing eigenvector centrality papers in red and the decreasing eigenvector centrality papers in blue. What unites these papers?

To gain a better understanding of the overall network trend of eigenvector centrality for the papers in question, I decided to create a boxplot of all of the paper eigenvector centralities for each year, which is represented in Fiugure 8. Figure 8, once again, shows a striking outcome: while there certainly are some papers that become far more important, structurally, over time within the network, the vast majority of the papers are virtually inconsequential as far as eigenvector centrality goes. For instance, in 1995, the average eigenvector centrality score was close to .9 with a modest standard error; by 2001, it was less than .2. As time progresses from 2001 through 2016, the average eigenvector centrality score crashes to nearly zero, while a handful of outliers grow in their structural importance within the network. Who wrote these papers and what were they about? Why and how have they become so structurally important within this network?

4.4 ERGM and the Analysis of Micro-Level Structure

One hypothesis may be that local, or micro-level structures could have an important role to play in the structural evolution of this citation network over time, thus causing certain papers/nodes within the network to have a structural advantage over the others as the field of knowledge production expands. Here I attempted a modest ERGM analysis (exponential random graph modeling). ERGM are a class of stochastic models which use network local structures to model the formation of network ties for a network with a fixed number of nodes (Wang et al., 2009). They are a useful method that uses Markov Chain Maximum Likelihood Estimation to approximate estimates for the odds ratio of the presence of different micro-level structures within a network.

Table 1 shows the results of these modeling exercises on these NCD / global health citation networks as they evolve between 1995 and 2016. While running these models (which, it turns out, takes a ton of time and computing power) I learned that many of the network parameters that I had hoped to test within this network (such as k-star, 4 cycles, triangles, and triad census) would not produce MCMC models that would converge. So, I was not able to estimate those parameters.

However, I was able to estimate the ERGM parameters for the presence of edges, transitive triplets (ttriple), and density, and their values are found in Table 1. The column labled ERGM~EDGES can be interpreted as a log odds measure of the density of the network. As might have anticipated based on the analysis of betweenness and closeness, as well as the growth of the number of notes of the network, the log-odds of the probability of any tie (i.e. the density) crashes and starts to become negative starting in 2001. The column labeled ERGM~DENSITY demonstrate an analogues trend. The column labeled ERGM~TTRIPLE demonstrates a slightly different trend. It seems to start modestly low (I could not get the model to run for 1995 data, so it starts in 1996) and then seems to level out at approximate zero, not becoming more negative or positive as the network grows. This potentially represents the relative lack of importance of transitive triplets in the micro structure of this network.

Overall, I would be skeptical to make any grand claims about the utility of this ERGM analysis. Although my MCMLE models seemed to converge, I was not able to run goodness of fit analyses to test how well these estimates fit the model and my actual networks. Additionally, ideally, I would run these analyses on a faster computer or gain access to a university-based super computer since this is such a large data set and I am doing so many analyses with this time series panel data.

5) Discussion

One clear puzzle emerges from this analysis: while betweenness universally increases for this network and closeness universally decreases, eigenvector centrality climbs for some papers and crashes for others. What’s more, Figure 8’s boxplot overview of eigenvector centrality scores by year shows that, on average, the papers are inconsequential to the overall structure of the network and a handful of papers emerge to the top as by far the most dominant. What are these papers and what might it signify both for this as a domain of scientific knowledge and for the politics of global health priority setting?

Through analyzing the titles, abstracts, and authors of the papers that are most important in terms of eigenvector centrality and degree, ten papers emerge as centrally important:

  1. The European Organization for Research and Treatment of Cancer QLQ-C30: A Quality-of-Life Instrument for Use in International Clinical Trials in Oncology
  2. The MOS 36-Item Short Form Health Survey (SF-36) 1. Conceptual Framework and Item Selection
  3. Diagnostic and Statistical Manual of Mental Disorders Source Information (1994)
  4. Diagnostic and Statistical Manual of Mental Disorders Source Information (2000)
  5. Measurement of patient outcome in arthritis
  6. Disability-adjusted life years (DALYs) for 291 diseases and injuries in 21 regions, 1990–2010: a systematic analysis for the Global Burden of Disease Study 2010
  7. Global and regional mortality from 235 causes of death for 20 age groups in 1990 and 2010: a systematic analysis for the Global Burden of Disease Study 2010
  8. Statistical Power Analysis for the Behavioral Sciences
  9. Alternative projections of mortality and disability by cause 1990–2020: Global Burden of Disease Study
  10. A comparative risk assessment of burden of disease and injury attributable to 67 risk factors and risk factor clusters in 21 regions, 1990–2010: a systematic analysis for the Global Burden of Disease Study 2010

There are several things that are remarkable about this list of the (by far) most important papers in this citation network. First, aside from the first most important paper—which is about the clinical process of diagnosing and treating cancer—none of these pieces are about a specific disease or even class of diseases. Instead, they are all meta-analyses or statistical overviews of epidemiological trends in noncommunicable diseases and their relative burdens globally. Second, the disease upon which they are focusing tends to be biased towards wealthy-world health issues: the DSM for mental health issues (which has a highly western-centric focus) and arthritis (has not been considered a ranking global health priority). Finally, all them have to do with capturing global measurements, standardized practices and protocols, and dominant paradigms—built from programs and practices rooted in the U.S. and Europe—that are to serve as models for health care systems in the global south. Considering that this network, examined from 1995 through 2016 was about “global health” and noncommunicable diseases, it seems surprising that these would be the overwhelmingly dominant papers in this sparsely connected network.

6) Conclusion

I began this paper with a commentary on the ways that scientific citation networks can enable and constrain the biopolitics of global health by reinforcing the legitimated framing of diseases and their interventions in certain ways, and not others. This paper points to the possibility that the structural evolution of the NCD / global health academic paper citation network has contributed significantly to this biopolitical conundrum. Specifically, important puzzle in the field of global health is: why have non-communicable and chronic diseases been so dramatically marginalized within the global health priority mix? First, comparing the burden of noncommunicable diseases (NCDs) and infectious diseases to their relative magnitude of investment via development assistance for health (DAH) demonstrates a remarkable disparity. Despite accounting for more than 30% of the overall disease burden globally (especially in low and middle income countries), less than 1% of all DAH is allocated specifically to care, treatment, and prevention of noncommunicable disease (Daniels, Donilon, & Bollyky, 2014).

Second, there has been a concerted effort by the noncommunicable disease community of practitioners and scholars to raise the profile of NCDs on the global stage (Geneau et al., 2010). Much of this political and scientific labor has culminated in rare and highly important United Nations General Assembly High Level Meeting focused on the global burden of NCDs in 2011. This meeting was the first UNGA High Level Meeting on a health topic since HIV/AIDS in 2000. Yet, despite the attention from global leaders on the world stage, nearly no new resources have been committed and invested in global NCD care and management. Finally, central to this debate has been a question about the nature of the social construction of NCDs globally, especially with regards to the burden, causal sources, and necessary systems-level interventions to meet the burden. Leading up to the 2011 UNGA High Level Meeting on NCDs, the World Health Organization (WHO) has doubled down on a focused framework of limited shared “lifestyle modifiable” risk factors as the dominant causal source of the NCDs globally. Dubbed the “4×4 Framework”, the WHO has sought to limit the terms of debate and focus to what they deem to be the four most “important” NCDs and the corresponding individual level lifestyle modifiable risks: cancer, diabetes, cardio-vascular disease, and chronic respiratory disease; tobacco use, unhealthy diets, physical inactivity, and the harmful use of alcohol (WHO, 2013). Scholars and practitioners, especially those providing care in poor, remote regions of the world have taken aim at this framing, saying that it excludes much of the important burden of illness, especially amongst the very poor and rural populations around the world (Binagwaho, Muhimpundu, & Bukhman, 2014; Bukhman, Mocumbi, & Horton, 2015; Kwan et al., 2016; Bukhman et al., 2015).

These three interlocked challenges—the sheer disparity between NCDs / infectious diseases’ resources and burden, the negligible growth in resource commitments despite NCDs’ expanded profile on the international stage, and the dynamic scientific and political contest of NCDs’ social construction and framing—create an interesting empirical puzzle that has important implications for the politics and governance of global health. What is blocking the political progress in expanding resources and academic focus on a progressive strategy for NCD care and control?

One hypothesis—that is supported by the findings of this paper—is that the dominant NCD framing (especially from the WHO and the global scientific community) historically has been rooted in a North American / European-centric view: a narrow set of illnesses and their associated individual-level, modifiable, statistically determined risk factors as the root causes (4×4 Framework). This framing has blocked the political momentum of NCDs because 1) it situates the locus of cause in bad decisions/behaviors of individuals and 2) it appears to be an unhappy byproduct of economic development and income growth. This framing renders the true experience of the poorest and most marginalized invisible to global policy makers and makes it difficult for activists to demand new modes of financing to support ministries of health to build progressive NCD treatment and prevention programs.

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Why we are unionizing at Boston University

bu-grad-students-unionHere’s some exciting, positive news: colleagues at BU and I are launching a campaign to unionize graduate student workers at Boston University with the Service Employees International Union (SEIU)!

This August, the National Labor Relations Board authorized “student workers” (basically everyone from graduate students to teaching and research assistants) the right to collective bargaining and unionization. Although the implications of unionization efforts by graduate students is yet unknown, many graduate students are taking up the cause at universities across the country. So far, I believe, only NYU has actually “won” their union and have negotiated a contract with their university administration. But, there are at least 23 other universities that are also launching campaigns to unionize their graduate student workers as well including Brandeis University, Brown University, Columbia University, Pennsylvania State University, Tufts University, University of Chicago, University of Virginia, and Yale University.

Here is our open letter about forming the union at BU:

grad-student-letter

I see this as an incredibly important opportunity for a few reasons. First, as I’m beginning to learn firsthand, academic labor is precarious. There is next to zero job security (unless you are able to land a coveted tenure-track job) and the compensation for graduate student employees (who provide the vast majority of teaching labor at a university like BU where tuition can top $50,000 per year) comes to be less than minimum wage (about $22,000 per year). Because we as graduate student teachers and research assistants do provide the academic labor backbone for most universities, we should be able to engage in collective negotiations with our administration. We must be able to work together to demand fairer compensation, health insurance, and other forms of support to make this vocation and commitment to academic life more manageable, especially for those who do not have pre-existing financial means. Collective action is necessary to advance fairness and justice for academic laborers across the U.S.

Second, collective action and unions will be desperately needed to combat the oncoming tidal wave of Trumpism. Action such as the fight for $15 amongst fast food workers and other efforts to advance worker rights are going to be under attack from what is certain to be a kleptocratic regime that will attempt to crush workers rights. Graduate student unions have the potential to be a useful source of ally power. We will have unique sets of resources, relationships, access, etc to bring to bear in working with people struggling for basic social and economic rights.

Finally, as academics, many of us will work in public policy, government, think tanks, non profits, etc. Having a generation of academics, thinkers, policy makers, and NGO leaders with deep experience in collective action, organizing, and unions potentially could bode well for the labor movement in the future. If more people have a personal experience with unions, see the value of this type of collective action, we could imagine a comeback for unions. But, this is also the big danger: it’s reasonable to think that Trump will be hell bent to crushing collective labor. He’s had a long history of harming his own employees workers’ rights. In fact, unions are already bracing for policy shifts.

So, now is the time to act. We’ve got to move quickly at BU and I hope that other schools can make big gains in organizing and unionizing in the coming months. The future of collective bargaining, and social justice for workers across industries and fields, may be at stake.

The evolving ideology of ‘sustainability’

Many of the lectures and discussions I’ve listened to about the launch of the Sustainable Development Goals have begun, tongue-in-cheek, with a comic satirizing the growth of the use of the word “sustainable” in our conversations about global health and international development.

sustainable

It’s a funny cartoon, but it underlines an important point: what we really mean by ‘sustainability’ will become an increasingly important ideological driver for development efforts over the next 15 years.

Paul Farmer, Sarthak Das, and Norwegian researchers Eivind Engebretsen, Kristin Heggen, Ole Petter Ottersen have an interesting historical perspective on the evolving concept of ‘sustainability’ that was recently published as a Lancet commentary.

changes in sustainability

They observe that the notion of sustainability has gone through three fundamental shifts since the early 1990’s. First, sustainability was referred by Gro Harlem Brundtland as development initiatives that were fundamentally durable and built to last. The mid-1990’s saw the definition of “sustainable” move from a descriptor of the longevity of a program towards an investment criterion for programs that prioritize the ability of local efforts to demonstrate capacities for “good governance” and “democratic practice.”  The latests evolution in the ideological underpinnings of sustainability seems to be associated with “with ‘continuous improvement’ and with “monitoring” and systems which are ‘domestically driven’.”

“An important aspect of the conceptual transformations is that the term sustainability has gradually changed from being a goal (durability) to acquiring connotations that serve as a selection criterion for development aid. Using sustainability as a selection criterion risks privileging recipients who have the capacity to gain control over health and living conditions and exclude others as unworthy needy. It would be a paradox if emphasis on sustainability ended up in preventing global equity and justice instead of promoting it.”

The neoliberal processes tend to push obligations from the collective to the individual. This seems like an important and cautionary observation for the coming “age of sustainable development.”

Hospital investments needed in the MDG –> SDG transition

University Hospital in Mirebalais: a state of the art 300-bed teaching hospital in rural Haiti.

University Hospital in Mirebalais: a state of the art 300-bed teaching hospital in rural Haiti.

The right to health movement is a political struggle for moving resources down the gradient of inequality in ways that can strengthen public sector universal health care delivery systems that meet the needs of citizens. Current policy, governance, and financing structures are insufficient for this aim. But, how should it be governed? What changes are needed at the WHO? What types of investments should be prioritized?

A recent post to the Health Affairs blog, written by heavy hitters such as the founding executive director of the Global Fund to Fight AIDS, TB, and Malaria, Sir Richard Feachem amongst others, highlights one of these debates: at what level of the health system should investments primarily be made?

The authors argue that we’ve focused heavily (perhaps too heavily) on funding narrowly constructed, vertical disease-specific programs:

“For the past four decades, donors have mainly funded disease-specific programs and global discourse has focused on the need for better primary care. In combination, these have contributed to remarkable progress in meeting many of the MDG health targets, especially those relating to child mortality, HIV/AIDS, and malaria.

Targeted programs and a primary care focus have been less successful, however, in achieving some of the other MDGs — most notably in the areas of maternal and neonatal mortality. While many papers and conferences have been devoted to the topic of “health systems strengthening,” funding priorities and programmatic approaches have remained narrowly targeted on diseases, or on a single platform of delivery: primary care.”

They argue that to meet the broader and more ambitious targets in the Sustainable Development Goals (specifically, to “ensure healthy lives and promote well-being for all at all ages.”) we need to have a renewed focus on hospitals and similar secondary/tertiary-level facilities as a crucial component of integrated primary care.

“Within the continuum of care services, insufficient attention has been paid to access to high quality hospital services. In both low- and middle-income countries, hospital quality and safety has lagged; in 2009, 15.5 million disability-adjusted life years (DALYs) were lost due to in-hospital adverse events. Despite domestic resources in most countries being disproportionately allocated to hospital care,hospitals in many low-income countries are inaccessible or are in a dismal state. Even with comparatively large expenditures on hospitals versus other modes of delivery, total domestic health expenditures are often too low to provide a good quality health system. These conditions are exacerbated by ineffective spending and lack of management accountability.

As a consequence, public hospitals in these countries are often dilapidated, lacking a reliable water supply, sanitation, and electricity. Drugs and other supplies may be unavailable, equipment is frequently broken, and basic infection control is absent. This makes it difficult, if not impossible, for limited medical personnel to ensure good health outcomes.

We argue that for personal health services, which are the focus of this perspective, it is now timely to rebalance the global health discourse and focus on the integration of primary care with essential hospital services. A strong health system needs both.”

They point to narrowly conceived cost-effectiveness analysis as a reason for insufficient investments in the capital intensive process of building and maintaining adequate tertiary-level facilities. They liken it to the investments in education made across Africa which have avoided higher education and specialty training, deemed too expensive for poor people.

“The SDGs call for health for all individuals, present and future. All platforms of care delivery are necessary for health system success, and none are individually sufficient. Building health systems with a long view—to sustainably preserve and attain health—requires an integrated approach where one platform supports, rather than competes with, another. Putting hospitals on the agenda alongside other platforms of care is not the whole solution, but it is a necessary part of the solution, if we are to have any likelihood of achieving the SDGs.”

Cost effectiveness, rights, and universal health coverage

As I’ve thought, read, and worked more on the social movement for the right to health, one inevitable tension that comes up is the aspiration for the highest attainable standard of health for all and the choices inherent in allocating scarce resources to the delivery of health care services. The tension between the right to health for all and the need to make choices about what to do (and what not to do) has led to the invention and widespread use of “cost-effectiveness analysis” to aid policy-makers in making these difficult choices. I have been meaning to read the book “Epic Measures“, about Chris Murray, but I know that it documents his work, with the Institute for Health Metrics and Evaluation to invent and codify analytic tools such as the Disability Adjusted Life Year (DALY) and the Quality Adjusted Life Year (QUALY) used in their efforts to quantify how, and of what, people die from around the world. This research has formed the basis of the Global Burden of Disease study, whose goal is to comprehensively measure epidemiological levels and trends worldwide.

These tools have been very useful to help “rationalize” budgets and allocate resources to ensure that needs are best met with the limited resources available. But, scholars, activists, and health care practitioners have routinely critiqued the blunt force use and uncritical application of narrowly defined cost effectiveness analysis to prescribe policy solutions challenges facing health care challenges, especially in settings of poverty. The challenge is that often these technocratic tools tend to scrub these policy decisions of their inherent political basis and can lead to deeply problematic policy decisions that apply a double (lower) standard to those living in poverty.

Historically, one of the most important examples what the cost-effectiveness analysis of HIV antiretroviral therapy (ART) in the early 2000’s: at nearly $10,000 per person per year, it was considered not cost-effective (and even unethical because of the cost) to provide access to ART to the majority of HIV positive people living in poor countries. Paul Farmer has a great analysis of this history in his 2013 NEJM Shattuck Lecture, showing the malleability of both cost and effectiveness in its narrow application to the question of whether or not to provide ART to poor communities. The cost of HIV meds dropped from $10K per person per year to less than $200. The effectiveness of building community-based programs through community health worker networks and social accompaniment (as demonstrated by the HIV Equity Initiative) could be proven. If both cost and effectiveness can change so rapidly, what is the epistemological basis for dogmatic deployment of cost-effectiveness analysis?

Eric Friedman and Larry Gostin of the O’Neill Institute at Georgetown Law School have a good blog post about reconciling cost-effectiveness in a rights-based approach to universal health coverage policy change.

“A traditional approach to answering this question is to focus on cost-effectiveness. Start with a given resource envelope. Then choose the set of health interventions that will buy the most health for the population. Under this approach, health is typically measured by disability-adjusted life years (DALYs). Run the numbers – the cost of different interventions, the expected benefits in DALYs – and include the most cost-effective interventions within the funds available. There is your universal health coverage benefit package.

A human rights approach differs dramatically. The first difference is the question we ask. It is no longer a straightforward matter of determining how to get the greatest health gain for the dollar based on straightforward formulas. “Coverage of what?” is only one question of many. The questions extend to the very process of answering this question, and include such questions as how are the benefits distributed across the population, how health systems can deliver on the chosen priorities, what are the resources available, and more.”

Friedman and Gostin expand upon how a rights-based approach could expand up and reconcile the use of cost-effectiveness tools, delineating the need for the approach to move beyond discrete interventions,  expand the resource envelope, acknowledge core obligations and a robust standard for all, move towards progressive realization, commit to equity and nondiscrimination, valuing local / people’s perspectives, and being accountable to those perspectives.

They conclude with a nod to the need for a robust social movement to ensure a rights-based approach to UHC and the potential utility of a Framework Convention on Global Health.

Social movements will determine whether the commitment to universal health coverage catalyzes incremental progress or a revolution in health, achieving a little more health for a few more people or, decades after the Declaration of Alma-Ata (1978), finally brings health for all. Committing to universal health coverage as a means towards the right to health is one of the surest steps we can take towards true transformation.

With this importance of the right to health, we must use the right to health platforms that we now have, even as we build upon them to construct even stronger ones – such as a new global treaty, a Framework Convention on Global Health, to reinforce the right to health, to clarify its standards, to provide for the pathways to towards this transformation – and in so doing, to further unleash the awesome power of human beings who will not be content until they succeed in claiming their rights.

Global health can never be boiled down to a technical math problem in which datasets deliver simple solutions. Advancing equity in global health is a challenge of reconciliation between what matters to people and how to allocate the resources within society to deliver those goods. It is fundamentally a matter of politics. Cost effectiveness is a valuable tool only insofar as it sharpens the political problems we face and helps us navigate these political challenges towards a more equitable allocation of health resources.

General skepticism, overestimation, and growing political divide

The Kaiser Family Foundation has continued their work to track and interpret American’s evolving views and opinions of development assistance for global health and recently released a report summarizing their findings. They have some of the best and clearest analysis of U.S. appropriations for global health. 1 2

Some key points that seem particularly relevant to the global health political field:

  • Americans really don’t know much about development assistance and foreign aid as it relates to global health. Americans believe that we should be the world leader in global affairs, but also that we are doing more than our fair share already.
  • Foreign aid is initially viewed with skepticism, but with a little more information and context, people’s views change favorably.
  • Americans systematically overestimate of the amount spent by the U.S. on foreign aid for global health purposes.
  • There is a growing political rift between Democrats and Republicans about the value of U.S. investments in global health.

Skepticism:

There seems to be misunderstanding of what USG investments are being made for global health purposes and a general skepticism about their effects. People think that we should be serving as a (or the) world leader on global affairs, but then at the same time think that we are already doing our “fair share”.

doubt in value of global health investments

Additionally, people feel like corruption is one of the most important problems with development assistance for health.

corruption biggest problem

Overestimation:

Americans also consistently and wildly overestimate the amount of money committed to global health programs, answering on average that they think at least 31% of the federal budget is spent on foreign aid.

It would be interesting to dig more into why this is the case. Do people have no idea what the federal budget really is? Do they have any sense what constitutes U.S. global health funding? Do people similarly overestimate the amount of funding for other types of programs / elements of the federal budget?

overestimation of US contribution to global health

Political Divide:

Finally, there is a growing partisan divide in the level of importance that democrats and republicans place on USG global health investments. This partisan divide on global health, though while not enormous, has grown by 11 percentage points since 2012.

partisanship in global health spending

To me, everything about this research points to why a community organizing model of movement building for the global right to health is so important. People generally have very little clue what we mean when we talk about U.S. investments in global health and they assume that we spend far more money than we actually do on programs that they assume don’t work very well. This absence of data / narrative / perspective fuels a partisan divide that stems from a fundamental difference of opinion of the role of government.

As I discussed in my recent previous post about opportunities for research in the social movement for the right to health, McAdam’s political process model 3 describes the emergence of social movements through the mobilization of organized grassroots groups, generation of new stories / narratives / evidence / data of possibilities to enable new frames of ‘cognitive liberation’ that can be disseminated by organized groups, and the harnessing of newly emergent political opportunities.

Luckily this report does point to one important political opportunity: Americans believe that investing in programs that advance global health is the right thing to do.

“Although many acknowledge there are domestic interests that could benefit from global health aid, nearly half of Americans (46 percent) say that the most important reason that the U.S. spends money on improving health for people in developing countries is because it’s the right thing to do.”

moral reason for global health spending

This is a significant political opportunity. In the wake of the Ebola epidemic, the emergence of the Sustainable Development Goals (though they note that very few Americans know what the SDGs are) and despite the skepticism and growing partisan gaps, Americans still think that we should invest in global health because it’s the right things to do. This moral imagination is something that must be harnessed.

We need to continue to share the stories of patients, of systems, of transformation, and demonstrate what is truly possible with a commitment to building systems oriented to the most poor and marginalized.

  1.  http://kff.org/global-health-policy/issue-brief/the-u-s-global-health-budget-analysis-of-appropriations-for-fiscal-year-2015/ ↩
  2.  http://kff.org/global-health-policy/issue-brief/the-u-s-global-health-budget-analysis-of-the-fiscal-year-2015-budget-request/ ↩
  3.  McAdam, Doug. Political Process and the Development of Black Insurgency, 1930-1970. Chicago: University of Chicago Press, 1982. 40-51. ↩

Grassroots advocacy: Congressional meetings and calling for more resources

38,133 Replies

Through PIH | Engage, we’ve been excited to dive head-first into working with our community organizing teams across the country to begin to have meetings with Representatives and Senators, calling on them to increase the resources available for nutrition and maternal and child program funding through USAID. Collectively, along with our partners at RESULTS, we are calling Congress to appropriate $200 million for Nutrition and $800 million for Maternal and Child Health in the FY15 federal budget. These are only modest increases from last year and are backed by a coalition of NGO’s working on health and development.

Some more background on the asks and why it matters: 2014 03 14 Advocacy Leave Behind vF

In order to contribute to this campaign and build power around these asks, we devised a three phase process:

  1. We worked through email campaigns and social media to promote an online letter-writing action. View the online tool and take the action here: http://act.pih.org/page/speakout/secure-funds
  2. We’ve worked to train our network of PIH | Engage teams across the country to schedule and participate in direct in-person meetings with their Representatives and Senators, asking them to urge their colleagues on the Foreign Operations Committee to allocate the requested funds to nutrition and MCH.
  3. We will be working this May to get Letters to the Editor published in newspapers across the country that discuss the importance of this funding to save the lives of moms and babies around the world.

Our training consisted of a large number of personal coaching calls with Sheena and the Community Coordinators as well as a series of three webinars hosted on a great platform called BigMarker.

Take a look at our webinars below:

Webinar #1: Campaign Overview

Webinar #2: Understanding the Talking Points

Webinar #3: Practicing Face to Face Meetings

In all, this campaign has been successful already – both in terms of the outputs we’ve been able to produce and in terms of learning how to do this grassroots advocacy ever more effectively. So far, we have:

  • Written a total of 6,300+ unique letters to U.S. House Representatives and Senators
  • Hosted three training webinars with more than 75 people attending / watching in total
  • Had 2 meetings with Representatives so far; have 10 meetings scheduled for the coming weeks

By the end of the campaign, I hope that we can:

  • Write 10,000+ letters
  • Participate in 15 direct in-person meetings with legislators
  • Have 15 letters to the editor published in newspapers

Again, this is all modest and pretty basic stuff when it comes to advocacy. Our hope though is that we can start to build a base of individuals and teams, aligned with PIH’s mission to advance the right to health, who are also competent and motivated to engage in direct advocacy and the political process. This base can hopefully continue to grow in the coming years, providing a powerful platform that can argue for far greater resources invested in public health systems globally.

Medical-legal partnerships and the right to health

39,223 Replies

Just finished reading the fantastic  article by Elizabeth Tobin Tyler on how we might start to conceptualize and advance a strategy for health as a human right in the United States. It made me realize just how weak our (in the U.S.) legal precedent and political appetite is for positive social and economic rights, including the right to health. The paper reinforced for me the history that the commitment to social and economic rights is, actually, deeply American, but was derailed by the politics of east-west / capitalist-communist posturing of the Cold War. It also gave me some hope that we may be able to begin to move away from a futile top-down, overly litigious, court-driven means of advancing the health as a human right agenda.

The idea advanced in this paper is centered around the potential power of linking health practitioners, lawyers, and community organizers: politicizing health care delivery and baking rights-based advocacy right in to the process of providing services:

“A systemic health and human rights strategy should be built upon interdisciplinary partnerships among health care providers, public health practitioners, lawyers, and community organizers. It should be founded on three principles: bearing witness to human rights violations within the community context; tracking systemic failures through data collection and monitoring; and broad-based legal strategies which include both individual and policy advocacy in a given community.”

Medical-legal partnerships are one way that this type of community-level partnership has been built between these different professional disciplines.

“The medical-legal partnership (MLP) movement in the US exemplifies a community-based health and human rights strategy that implements a legal advocacy and social accountability approach by connecting lawyers, health care providers, and public health practitioners. The MLP model, first established in a safety-net hospital pediatrics department in 1993, now exists in over 500 legal and medical institutions in the US. The model is also being adopted in both Australia and Canada.”

Clearly, MLPs should play a role in a rights-based advocacy strategy in the U.S. But, I wonder how this type of patient-provider-level accountability and advocacy could be used to politicize the act of global health delivery in low income countries? If the goal is to enable MOHs and governments to take on the responsibility for protecting the right to health of their citizens, don’t those citizens need mechanisms to hold those governments accountable for delivering on that duty?

It seems like a movement for the right to health requires both the “supply side” — creating the policy and financing space through foreign aid and “accompaniment” — and the “demand side” — legal recourse for those receiving substandard care or none at all.

Definitely some interesting stuff when considering a country like the U.S., which should have dealt with these issues long ago. But, for nations interested in building the systems of social protection and healthcare delivery to protect citizens’ right to health, ideas such as MLPs should be built in.

Advancing the case for investing in health

39,413 Replies

A nice piece was published this week in the Huffington Post summarizing the conclusions of the Global Health 2035 commission. Larry Summers and Gavin Yamey write that, “We are on the cusp of a once in human history achievement.” Major claims that seem hyperbolic until you dig into the report, as I did here. The report is significant because it brings together modern health and development economics and new methods to analyze what value could be created by building policies that consider health a public good and protect the health of the poor and marginalized in particular. From the HuffPo piece:

“Perhaps the most striking finding of The Lancet report is that the economic payoff from investing in a grand convergence would be enormous. We used new research methods from health economics to put a dollar amount on the direct value of greater survival. We found that every one dollar invested in achieving the grand convergence over the period 2015-2035 would return between 9 and 20 dollars. This return on investment is nothing short of astonishing. In financial markets, investments with foreseeable returns of between 9 to 1 and 20 to 1 over reasonable time horizons simply do not exist.”

But, of course, this achievement will take  significant investment, much coming in the form of development assistance and foreign aid.

“Though low-income countries will still need direct financial support, we should begin to shift global health aid to providing global public goods. We must double our investment in research and development for vaccines, diagnostics and drugs for those conditions causing the most deaths in the poor world. We must invest more heavily in what is called “implementation science”–the identification of the most cost effective modes of treatment in different kinds of environments. And we must start to get serious about tackling cross-border threats, like antibiotic resistance, counterfeit medicines, and flu pandemics. The next flu pandemic could be far deadlier than the 1918 epidemic that killed 50 million people in an era before mass, international transit.”

The Global Health 2035 commission is coming on the heels of the expiration of the Millennium Development Goals and there seems to be a growing alignment of people in power – from Jim Kim to Bill Gates – that investment in public health is one of the best ways to view foreign aid in the coming decades.