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6 Summary of Considerations for Developing a Toolkit for Country-Led Decision Making T his chapter summarizes the main themes and key messages from the presentations and discussions during the 3 days of the workshop, with a particular focus on considerations for developing a toolkit to support decision making at the country level. Throughout the work- shop, planning committee members Rachel Nugent, Peter Lamptey, Kalipso Chalkidou, Stephen Jan, and Derek Yach moderated an ongoing conversa- tion by offering provocative questions and observations that engendered extensive discussions among the presenters, panelists, and those attending the workshop. On the final day the Institute of Medicine project direc- tor, Bridget Kelly, summarized the preceding workshop sessions. Then, to start the final discussion session of the workshop, four discussants—Arun Chockalingam of the National Heart, Lung, and Blood Institute of the U.S. National Institutes of Health; Sonia Angell of the U.S. Centers for Disease Control and Prevention; Scott Ratzan of Johnson & Johnson; and Amanda Glassman of the Center for Global Development—offered their thoughts, after which the conversation was opened up to include all of the workshop participants. SCOPE AND GOALS FOR THE TOOLKIT “Health is emerging as something that countries identify as both a hu- man right and a development goal,” one discussant said, “and if those two things are really to be taken seriously, chronic diseases can’t be ignored.” However, the range of possibilities for addressing chronic diseases can seem overwhelming, another participant observed. Health systems in low- and 69
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70 COUNTRY-LEVEL DECISION MAKING middle-income countries are already overburdened in many cases, yet much can be done even with very limited resources. One view is that the primary purpose of developing a toolkit would be to dispel the myth that the prob- lem is overwhelming and to support countries in navigating the choices. There are many questions that countries may want to answer as they plan for chronic disease control, a discussant said, and the participants at the workshop offered a number of examples: What are the health aims, or the diseases, or the risk factors that need to be targeted? Which programs should be implemented? Which programs will be effective, feasible, and affordable? What should be the timeframe for developing priorities and planning? One discussant commented that it is “useful to take a step back and ask ourselves, what is the key factor that is impeding the implementation of NCD programs at the country level that the toolkit should address?” The discussant suggested several possible impediments: the difficulty of getting a line item for specific chronic disease activities in the budget, the need for assistance with how to estimate costs for interventions, or the need for cost- effectiveness evidence for chronic disease interventions that can be used in national dialogue. Amanda Glassman was particularly interested in the idea of a toolkit that could lead to a costed national plan for chronic disease prevention and control that also includes estimates of impact. Having estimates of the number of lives that could be saved and what it would cost would provide a very powerful policy tool, she said. She noted that it is also important to be able to approach ministers of finance in particular not just with costs but with estimates of economic impacts and potential savings. Several participants suggested that a focus on a specific disease—or even a focus on a category of diseases, such as communicable diseases or noncommunicable diseases—is too narrow. Many of the actions needed to address one disease or category of diseases are also important for other dis- eases, one observer noted: strengthening health services, improving health insurance and primary care, and providing more well-trained and motivated health care workers. Another offered a similar comment: “If what goes into the [chronic disease] toolkit is different from what goes into a com- municable disease toolkit, we are potentially misallocating resources.” In fact, one goal of a toolkit may be to help countries plan how to coordinate the programs and care they can offer—across population-based programs and individual health services as well as with efforts such as policy changes that need to be implemented outside the health system. However, this is a challenge in part because programs and funding are often organized in “silos.” Sectors that could be working together are often in competition, which undermines the goal of coordination or integration. One discussant noted that an important goal for the toolkit might be to
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71 SUMMARY OF CONSIDERATIONS assist countries in institutionalizing a process for rational, evidence-based decision making. “What we are really trying to achieve is a process rather than just a list of things that will or won’t get funded,” he said. Several participants agreed on the importance of this goal, and a number of models for accomplishing it were noted. For example, some countries have regular national surveys that support decisions about costing health care options; others have national advisory councils in which researchers and policy mak- ers take part. Another participant suggested that public health professionals within government ministries need to “become a lot more proactive—they have the capacity to do research and to speak to politicians.” However, as another noted, “It won’t occur naturally because policy makers are very busy; unless it is part of their daily critical path, it won’t happen.” Other possibilities for institutionalizing evidence-based decision making are academies that are apolitical and independent and can convene experts and decision makers to facilitate shared understanding, and “parliamentary twinning schemes” that link policy makers with science advisors. Adaptability emerged as another key consideration if the toolkit is to be useful for country-level planning and relevant for the different environ- ments in which it will be used. The countries discussed at the workshop represented a range of economic circumstances, disease burdens, health systems infrastructure, and funding and administrative structures. One discussant wondered whether it would even be feasible to develop one toolkit that could meet the needs of diverse countries. “Should there be a list of key interventions that address 80 percent of the disease burden,” a discussant asked, “or should we try to be everything to everybody?” Several participants suggested that the toolkit should present a menu of options so that countries can tailor the toolkit to their needs and priorities, rather than prescribing solutions based on global estimations of what would contribute most to reducing the global burden. Another suggestion was that a toolkit could include model plans for addressing noncommunicable diseases that could be adapted to local needs, but still allow countries to move forward “without starting from scratch.” There was even a suggestion that the abil- ity to adapt the tool for regional planning could be useful. For example, one participant noted, among Caribbean countries the greatest need is for regional high-tech centers because individual countries in that region are too small to sustain such expertise. One participant envisioned the toolkit as a technical instrument that would offer a universally applicable process in guiding priority setting through the use of local information and mecha- nisms. Each country would use the toolkit to assess evidence and to develop priorities that are reasonable in a given context; this is “something that each country will have to determine through its own indigenous institutions and preferences.” Other questions were also raised: Who will use the tool and shape it
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72 COUNTRY-LEVEL DECISION MAKING to a particular country’s needs? Who will use the output of the tool? How will those choices affect the tool’s influence? Arun Chockalingam suggested that a successful toolkit should be applicable to the country in question and simple enough to understand and use, and it should be validated and pilot tested. Several participants reinforced the idea that the toolkit should be simple, and that it should also be easy to integrate with existing tools. If we keep introducing new tools, one observed, “we undermine people’s confidence and their willingness to invest the time in learning how to use new ones.” As Sonia Angell noted, if a tool is difficult to use it may even create the need for increased capacity. The tool cannot be effective if the infrastructure to apply it is insufficient, she added. In summary, over the course of the workshop the participants discussed the many questions that countries might seek to answer and the many different uses of information that could comprise the scope and goals for a toolkit—setting priorities, decision making, advocacy and mobilizing resources, deriving or shaping questions, elucidating the options to meet a specific implementation goal, promoting dialogue about alternatives, stimulating a thought process about innovation, generating a report card or score card for accountability. While these different uses are not mutu- ally exclusive, each implies somewhat different content and strategies, and several participants advocated care in identifying a principal purpose. Ultimately, it was clear that no single tool can address all the differ- ent questions a country may have and all the country’s goals for the use of evidence and information. “A model that deals with everything in life, period—that means every decision made—it’s impossible. And it would be 6,000 pages long, and nobody would look at it,” one discussant com- mented. “Nor do we want 6 million models to deal with the 6 million dif- ferent decisions that potentially make up a health care or a life system. And so trying to find the balance between the two is a struggle, but it doesn’t mean we shouldn’t be looking for that.” To maximize adaptability and util- ity, therefore, the goal that emerged was not to attempt to create a single modeling tool that could comprehensively address everything, but rather to develop a way of gathering together different tools that would be available to policymakers and other stakeholders in countries to serve multiple needs. Arun Chockalingam noted that a suitable goal for the toolkit would be that “the whole is better than the sum of its parts.” KEY ELEMENTS TO INCORPORATE IN THE TOOLKIT Assessment of Current Status and Progress An important first step in designing strategies for chronic disease con- trol is to assess, at the country level, the current profile of disease and risk
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73 SUMMARY OF CONSIDERATIONS factor burden, the existing policies and programs to address that burden, and the key impeding factors that are specific to the country. Understanding the realities of the current status in a country is critical to inform what the priority targets for intervention should be, what the most appropriate and feasible interventions are, and what intermediate steps may be necessary to achieve implementation of control efforts. The level of awareness and recognition of the growing burden of chronic diseases is variable across countries—in some countries this may still be a key first step in any control effort, while in others there may be a high level of awareness already among policy makers to serve as a starting point for the planning process. Similarly, in some countries there is cur- rently little technical expertise for chronic diseases, with very few health or policy professionals working in this area. In others, by contrast, specialty institutions and expertise for chronic diseases have been part of the national fabric for some time and the next step is to translate this into making chronic disease control a public health and policy priority and scaling up capacity and implementation of policies and programs. Several workshop participants emphasized that a valuable part of a toolkit would be a way to assess a country’s readiness for particular inter- ventions. One participant noted, “Some of the interventions are relatively simple and don’t depend on a strong heath system, but others will only be successful if there is some degree of maturity in the health system, [e.g.,] an adequate number of health workers, an adequate logistical system, medical records system.” The need to assess and build capacity may apply not just to infrastructure and technical staff but to managerial, administrative, and other kinds of staff as well. In addition, capacity building may be needed at the national, regional, and local levels and in both government and non- governmental sectors. For chronic diseases, which are widely recognized as requiring a multisectoral response, there is also a need to assess and plan for capacity building not just in the health services and public health arena, but also in other related fields such as transportation and urban planning, agriculture, sustainable development, and education. Finally, the advantage of a baseline assessment is that once a method or framework has been established for assessing the key components of the response to chronic disease, this can also be used as an ongoing tool to as- sess progress over time and inform future iterations of the planning process. Data and Information Needs The goal of evidence-based decision making and planning is to assess the evidence to help determine which interventions are likely to be not only effective but also feasible and affordable in a given country context. How- ever, the quality of the output for any information-driven process depends
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74 COUNTRY-LEVEL DECISION MAKING on the quality of the data and the assumptions that underlie the inputs. The country representatives and other presenters and discussants highlighted issues related to data, noting limitations in most low and middle income countries in “current basic epidemiology, basic vital statistics, data on pro- gram monitoring and evaluation, data on costs and the economic burden, and also data about the other criteria, such as values and preferences.” Indeed, no country has all of the data that would ideally be needed to in- form the decision-making process, whether as formal input into a model or as information and analysis to be communicated to decision makers. The barriers to data collection that emerged in the discussions spanned a range of issues, including the lack of attention and resources applied to data col- lection for chronic diseases; the limited number of experts in chronic disease surveillance, research, and evaluation; a lack of capacity in other aspects of data collection such as field workers with the skills to assess factors related to chronic disease; and limitations on data collection design and approach, such as one example of a household survey in which women were not asked about tobacco use. On the other hand, a theme that arose from the country experiences presented at the workshop is that, while the ideal data might be lacking, there are data that, if interpreted appropriately, can be reasonably used to inform decision making in lieu of the ideal. One discussant noted that he was “a bit surprised by the extent of data that are available,” despite the gaps that people identified. He was expecting the situation to be worse. For example, some countries have some chronic disease data from employ- ing WHO-STEPS, from large-scale international research studies, or from the addition of chronic disease information to demographic and health surveillance, as is being done in Bangladesh. Other examples of usable data sources from the country presentations include hospital admission, discharge, and mortality data; small-scale surveys; research studies; and regional data from countries with similar demographics, epidemiological profiles and current status in terms of control efforts as well as capacity, infrastructure, and resources. In fact, one discussant asked, “Why are we collecting more data when we are unable to use the simple data that we already have?” He suggested that countries do not at this stage have the capacity to use sophisticated models and absorb additional data. Therefore, an important message that emerged was to not wait until there are better data but rather to make use of the best available data now—and then to simultaneously plan for improvements in data collection as a part of disease control efforts, so that future iterations of planning and decision making will have ever better information as inputs.
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75 SUMMARY OF CONSIDERATIONS Costs and Economic Analysis Although many countries would like to treat health care as a basic human right, they all face the challenge that cost plays a fundamental role in decision making. Improved health care costs money, and in their presen- tations the country representatives all highlighted areas where additional funding is needed. “We should not be shy in emphasizing that financing is an absolutely critical part of this,” one participant said. As moderator in a discussion session on key factors that influence decision making for health, Kalipso Chalkidou raised some key questions: “What does it mean to have the right to health? How does it get implemented? How does it link to funds?” She added that this is not just an issue in low-income countries. Her home country, the United Kingdom, “is running out of money,” and waiting lists for health care have been growing by as much as 200 or 300 percent. One participant commented, “The one inescapable fact that we are dealing with . . . whether it is Sweden, the United States, Uganda, or Ban- gladesh, is that we are all going broke in one way or another.” Therefore, any tool or process to support decision making for chronic disease control would need to capture information that can help convince government and other stakeholders to increase the level of resources dedicated to health and to chronic disease control. To achieve this, policy makers need evidence from economic analyses. Increased resources for chronic disease may in- clude adding funding—however, total government and other expenditures are unlikely to increase greatly. As a result, alternatives discussed by the workshop participants included reallocating resources or finding ways in which current expenditures can be applied to include chronic disease con- trol, such as opportunities for services to be added on to existing programs and infrastructure with minimal additional marginal costs. A related theme that emerged across the country representatives at the workshop was the urgent need for health economists who understand the country context and the issues around chronic disease planning and implementation and who have the skills to use these kinds of costing and economic analysis tools. When funds are limited, cost effectiveness becomes a critical concern. If data as specific as possible to a country are used, a toolkit that includes tools for economic analysis could guide countries in reviewing services and actual costs and identifying inefficiencies specific to their systems that could be corrected. A toolkit could also guide countries in identifying what the most cost-effective policies will be in the context of their political and economic environment, and then to develop incentives and advocacy to promote those policies. One participant cautioned, however, that the toolkit should not be too prescriptive because “the confidence intervals around cost effectiveness are in truth fairly broad.”
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76 COUNTRY-LEVEL DECISION MAKING For credible and realistic budgeting, it is also important to consider the true total cost of implementing chronic disease control efforts. This means the costs of necessary intermediate steps, such as training new workforce or adding new infrastructure or equipment or the costs associated with the effort required to successfully pass new legislation. In addition, costs based on the current known burden of disease or risk factors may be an underes- timate of true costs. One discussant emphasized this aspect of the problem, noting that once a health system begins new screening the result will be an enormous demand for additional care for patients identified as having such conditions as hypertension and diabetes. The same thing happened with HIV, she noted: “Once I know who [is] HIV positive I have an ethical imperative to treat those people with the full armament of interventions.” It is important to anticipate this expansion of identified need as part of the planning process and the estimation of costs. A related issue in resource allocation is opportunity costs. Prioritizing investment to address one disease may divert money from other disease control efforts, and prioritizing investment in health may take money away from other development efforts. “It could be that in managing hyperten- sion to prevent strokes, we might need to take money away from HIV,” a participant said, but “these decisions are made anyway implicitly every day. Can we take the heat when we make the decision making explicit?” Where the toolkit might help is insulating policy makers, one discussant noted. If the toolkit provides an explicit, rational process for priority setting, they may take less “heat” when making a rationing decision in allocating re- sources. On the other hand, making the tradeoffs explicit may also open the door to even greater political and societal pressures on decision makers. Opportunity costs are one way that decisions about health expenditures and investments in one area can have an impact in other areas. The con- verse of this is opportunities for synergistic investments that benefit multiple health issues, such as strengthening health services including primary care, improving health insurance and other financing mechanisms, and providing more well-trained and motivated health care workers. A similar consid- eration is opportunities for services to be added on to existing programs and infrastructure with minimal additional marginal costs. On this topic, Derek Yach suggested that one of the most important areas for the future will be the integration of noncommunicable diseases into general health services. He said that investments in HIV/AIDS and tuberculosis create a financial opportunity that could be seized if measures related to chronic disease could be folded into those existing programs. He added that it would be valuable to examine current “missed opportunities,” as in a study conducted by UNICEF to find ways to ensure that no child in a target age group would leave a facility without receiving measles immunization ser- vices. The rationale was that with millions of children going through these
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77 SUMMARY OF CONSIDERATIONS facilities, the major investment has already been made, and the marginal extra cost of adding in a vaccine would be trivial. Similar logic could apply with chronic disease, where it would make sense to begin with simple, inex- pensive approaches to add chronic disease services onto existing programs, such as using patient visits to clinics for other programs, for example HIV services, as an opportunity to check blood pressure. Information and analy- sis that identifies synergistic or minimal-cost opportunities will help focus the planning process on ways to maximize existing investments, which is especially important when total resources are limited. Planning for Implementation and Adaptation An important part of gathering, analyzing, and applying information to decision making is the need to take into account the feasibility of not just initiating but also sustaining planned efforts. This needs to be factored into what interventions are selected as well as into realistically determining costs. Ideally, support for the planning process would take into account a long-term timeframe in order to incorporate developing capacity in human resources and infrastructure, anticipating an evolving disease burden, and allowing for sufficient time to see a return on investment in the form of health and economic benefits. One participant commented, “It’s not simply choosing a menu of programs and implementing them; it’s thinking about how that’s going to play out over time, how capacity will be built, how expectations for results may evolve over the long term.” Therefore, tools for prioritizing interventions need to include a way to highlight choices that will build on current strengths in the existing system to develop chronic disease control efforts and that while being implemented will also increase capacity. Thus, short-term efforts can also serve as a basis for successfully scaling up or expanding the scope of interventions in the future. Another important feature of supporting a long-term time horizon is to plan for the flexibility to adapt priorities and strategies based on the reali- ties of implementation, changes in the resource environment, and adoption of emerging innovations. Sonia Angell noted the danger of “decoupling initiatives and implementation from planning. . . . You can plan for one thing, and then within 6 months you realize you have to scrap that and move somewhere else.” Preferences and Values In addition to demographic, epidemiological, intervention effectiveness, and economic data, participants emphasized that there are other inputs that may also be incorporated in the policy decision-making process, either implicitly or explicitly. There are a wide range of factors that can contrib-
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78 COUNTRY-LEVEL DECISION MAKING ute to one health issue being prioritized over others, and it is important to acknowledge that the resulting preferences and values are a key part of pri- ority setting, and therefore to incorporate them in the process. As one dis- cussant noted, “Many things will cause one health issue or one population to be privileged over others and that’s part of priority setting too. There’s advocacy, there are donors, there’s the prime minister’s cancer—lots of fac- tors that will cause some things to be privileged and other things to be pe- nalized.” These preferences and values do not just come from government leadership but also other sectors of society with a stake in the priorities for health care and for government investment, including nongovernment sec- tors, professional societies, academic communities, advocacy groups, civil society organizations and even external donors, discussants noted. Many of the country representatives said that decisions about investments in health must also be responsive to the concerns of the public and the community at large, as was done explicitly in the examples from Grenada and Chile. Participants at the workshop agreed, stressing that communal action is needed to support real progress in many areas. The biomedical community places the highest value on empirical evi- dence, one discussant noted, so “when you formalize such evidence into a model, then it privileges that kind of information.” If a model is seen not just as a research tool but as a policy-making aid, things look a bit different. “I don’t think there is any controversy about the value of these models as important research tools,” another discussant commented. “The controversy lies in using these models as a way to make decisions about the allocation of resources.” Successful support for those decisions cannot be done solely with models that privilege empirical evidence. The risk is that “as these models get more and more complex, what you are potentially asking decision makers to do is perhaps cede responsibility for decision making to the models.” This could potentially reduce the transparency of decision making by “essentially relegating it to a black box–type process.” “A model is a tool that should not be a substitute for other processes,” another participant noted. Another added the view that such models are very useful for “logistical questions,” in the way that a business model helps users make sure a product gets where it’s needed at the right time. They are less useful, in this discussant’s view, for “actually trying to change the very business model that underpins it.” Models are not necessarily used to question the assumptions underlying them, but he suggested that if mod- els are used to “lay bare the assumptions and remodel,” that would be a good thing. Without that element, he continued, “the complexity of the decision-making process is ignored, the deep ethical issues are ignored, the complexity of the [relationships] among programs is ignored. This is not a mechanical process, but a very political one. I fear that putting it into a model can dumb down what is by necessity a very complex process.”
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79 SUMMARY OF CONSIDERATIONS Therefore, empirical models need to be part of tools that support a broader process that promotes transparency and that takes into account other fac- tors such as ethical issues, public interest, political will, and negotiation of the interests of competing priorities. Communication Several participants emphasized that part of a successful decision mak- ing process lies in establishing a stronger link between evidence and policy. As one participant commented, “We have research going on but I am afraid in some countries it is not well packaged and given to the politicians and policy makers in language that they can understand.” One of the toolkit goals could be to facilitate access to information and resources through communication tools that streamline and organize information in a way that is targeted to specific audiences and purposes. Scott Ratzen in particu- lar focused on the importance of the way a toolkit packages and communi- cates the evidence and outcomes so that it is accessible and easy to interpret for potential users like politicians and policy makers. He noted that he had seen some communications that “looked like the Yellow Pages.” Instead, he said, the “at-a-glance publications, or the one-pagers, or the one-card, or the electronic pieces, are the pieces that make a difference.” He cited his experience with the Institute of Medicine’s Roundtable on Health Literacy in recommending a simple scorecard approach that would highlight the “the 5 to 10 things that we all need to do, or know, that on an individual, community, and systemwide basis can help make a difference for noncom- municable disease.” There might be debate about what those 5 or 10 things are, he commented, but if those are in place, “we can measure and build on those indicators and really make a difference.” In this way, communica- tion tools can also serve as mechanisms to allow for basic information to be tracked over time as an indication of progress in the implementation of chronic disease control efforts. Another area of discussion that emerged at the workshop was that to truly support evidence-based decision making, this communication needs to work in both directions—as one discussant put it, there needs to be not only evidence-based policy making, but also “policy-based evidence making.” In other words, policy makers need to use evidence and therefore there is a need to find ways of effectively communicating that evidence to them. In the other direction, to ensure that appropriately useful information will be available, those who generate the evidence also need to consider the needs of policy makers in designing data collection and evaluation and in setting their research priorities. Related to this issue, several participants com- mented that in many countries there is limited demand from policy makers for data and empirical evidence as part of their decision-making process,
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80 COUNTRY-LEVEL DECISION MAKING and that there is limited support for investment in data collection activi- ties. A potentially important aspect of supporting policy planning would be to build a feedback cycle into the data collection process and to work with policy makers to create greater demand and to incorporate support for gathering this information into planning, priority setting, and resource allocation. Final Reflections This workshop took place in the lead-up to the September 2011 United Nations High Level Meeting on Noncommunicable Diseases, a milestone event in the increasing recognition that chronic diseases represent a major health and economic burden in low- and middle-income countries. These countries face many competing demands on their available resources, from basic development priorities to a range of important health needs. Low- and middle-income countries currently have limited internal resources devoted to chronic diseases, and also receive little external funding to address this is- sue. Nonetheless, it is increasingly clear that reducing the burden of chronic diseases is critical to meeting global health and development goals. The workshop was convened to advance the global conversation about how to support countries in planning for chronic disease control. There was agreement among the participants that the overarching aim should be to assist countries in navigating the many, sometimes overwhelming, options for chronic disease interventions and programs, rather than prescribing ex- ternally determined priorities and solutions. In this way, real progress will come through approaches that are driven by a country’s particular disease burden, priorities, capacity, and resource availability and that are led by a country’s key decision makers and stakeholders. The challenge is that the process of selecting, planning, and implementing chronic disease control programs will by necessity be quite complex. The participants in the workshop considered the experiences of several low- and middle-income countries and contemplated different examples of tools, models, and methods that could support countries in their decision making. From the resulting discussions about the appropriateness of tools for different purposes and different contexts, the theme emerged that to effectively support the decision making process, a toolkit would need to include but not be limited to tools for a technical assessment of disease burden, intervention effectiveness, and costs. It would need to be designed to support a broader process of priority setting and decision making that reflects not only empirical evidence but also the preferences and priorities of those in the country with a stake in how resources are allocated. This would need to be a process that uses and strengthens a country’s existing institu- tions and mechanisms for information gathering and for decision making.
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81 SUMMARY OF CONSIDERATIONS When it comes to chronic disease control in low- and middle-income countries, there are currently opportunities and challenges in providing services and programs, in implementing health-promoting policies across sectors, and in the institutionalization and accountability of government de- cision making and resource allocation. The workshop ultimately challenged participants to think about several key questions: What can country-level stakeholders do next to overcome the challenges and take advantage of the opportunities? What can the global community do to support them? What mechanisms and tools can be developed to guide and strengthen the process of setting priorities for investment and planning for implementation? The workshop initiated a conversation about these questions, and in their final reflections the participants expressed the hope that this dialog will be taken up and expanded at the global and country level to help advance chronic disease control worldwide.
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