As countries reaffirm their commitments to achieving Universal Health Coverage, governments face extraordinary pressure to allocate scarce resources in a publicly justifiable manner. The growing list of available health interventions and increasing demand for health services mean that tough spending decisions have to be taken, with unavoidable trade-offs. How can such hard choices be made?
While difficult trade-offs—in health and across the whole of government—are not new, governments’ room to maneuver has shrunk. Not only are resources constrained, but governments must also increasingly grapple with broad questions of institutional legitimacy. This means that the politics of health care spending, contentious at the best of times, require fresh thinking about the foundations of such legitimacy.
To navigate the fiscal and political pressures underlying health coverage decisions, many countries have established, or are pursuing, dedicated priority-setting agencies that rely on evidence, content expertise, and standardized methods and processes to inform fair allocation decisions. Traditionally, agencies like Health Technology Assessment (HTA) bodies are perceived to operate best when they have some degree of autonomy and independence, operating at an arm’s length from more politically driven processes and the tumult of regime changes, while concentrating technical expertise on their specific remit.
But how do public agencies that make hard choices like HTA bodies come to enjoy the autonomy and independence needed to pursue policy in a technically sound manner? And perhaps more critically, how can existing and new health technology assessment bodies, and the policy recommendations they advance, attain and retain legitimacy in the eyes of the public?
The legitimacy of autonomous agencies–such as those engaged in health technology assessment, but also central banks, revenue allocation agencies and other government bodies that make allocative decisions–is anchored not only in their technical competence, but also the ways in which they engage with other institutions and citizens. Thus, the degree to which agencies are transparent, open to scrutiny, and willing to incorporate ideas and feedback from the public are important factors in how legitimate they are seen to be. Below we explore how two core aspects of democratic legitimacy are playing out in the context of HTA and other government agencies: public participation and public reason.
As HTA approaches evolve, there has been growing pressure on government agencies of all types to create meaningful opportunities for public participation and deliberation about their most important decisions. In some cases, this means inviting public participation for the first time on issues that were formerly decided in the dark. In others, it means making basic consultation mechanisms more participatory. Whereas a decade ago some agencies might have been able to follow a simple “notice and comment” procedure, today, in at least some cases, they might be expected to create a “mini-public” to deliberate on the most contentious issues facing them.
These changing views of what constitutes legitimate participation has seen wide experimentation with more direct engagement of the public in HTA and health priority-setting, from the NICE Citizens Council to mini-publics and citizens’ juries across multiple settings and health intervention assessments. However, with various modes of public participation across different stages of the HTA process, guidance is lacking about which approaches of public engagement should be adopted in various settings and what constitutes good practice. Indeed, this question is being asked widely, as many sectors, not only health, experiment with novel approaches to public engagement, and look to others, such as the environmental sector, for possible lessons.
Moreover, the spread of participation raises an old specter: that democratic practices will overload public agencies and undermine their ability to provide sound technical guidance. In the 1990s, this was the justification for insulating policymakers from public pressure in order to push through difficult macroeconomic reforms in post-communist nations. Many worry that certain forms of stakeholder involvement in HTA processes will not only weaken the technical role of these bodies, but may even leave the HTA endeavor vulnerable to capture by certain powerful interests groups. As experimentation with, and adoption of, participatory strategies accelerates, there is a need for thoughtful standards that can enhance the quality of these public engagement activities while not eroding the rationale for these bodies in the first place.
While some work has been done in this area to identify the broad contours of good participation, there is still tremendous ambiguity about what approaches should be adopted where and for what purposes. If done right, however, we believe that public participation can enhance the quality of HTA recommendations by considering a broader set of relevant information and perspectives than the technical analysis allows, while also improving the understanding and perceived legitimacy of technical policy recommendations.
The role of public reason—justifying decisions in terms that reasonable people could understand and accept—has long been at the core of the idea of political legitimacy of state actions. There is a broad consensus that governments must explain decisions about the use of public finances, for example. And public justification is also at the heart of recent judicial interventions that have challenged arbitrary government action across sectors as diverse as social welfare, immigration, and the environment in countries as diverse as the United States, Germany, Hong Kong, Kenya and South Africa. For example, recent court cases overturning policies that would have limited access to welfare benefits in Hong Kong and health insurance in the United States turned on the quality of the public reasons governments provided for their actions in each case.
The ideal of public reason has a long pedigree in the health sector. It features prominently in conceptions of procedural fairness for health priority setting, most notably in how influential “Accountability for Reasonableness” (A4R) has been in the development and evaluation of HTA institutions and processes.
Rooted in the Rawlsian notion of public reason, A4R sets forth conditions for fairness in health priority setting, particularly the conditions of “publicity” and “relevance.” Under A4R, publicity requires broad transparency about priority-setting decisions and the specific reasons and rationales behind them. Relevance requires that these reasons resonate with the values and criteria considered important by affected people and populations. Even if people disagree with or do not like the final recommendation reached through the process, justification of the decision in terms that fair-minded people would accept as reasonable will offer legitimacy to the policy recommendation. So, what does this mean for priority-setting bodies, particularly those committed to highly technical approaches?
Firstly, it raises the question of whether the methodological approaches adopted by the agencies adequately cohere with public values. While many technocrats endorse an approach that relies on cost-effectiveness analysis and a value-for-money threshold, does the public view decisions based on CEA as acceptable, relevant, and legitimate? Public outcry, media coverage, and court cases in response to a vast number of excluded health technologies suggest that value-for-money criteria are not sufficient to win the hearts and minds of the public, and that a broader basis for assessment and justification of health coverage decisions will be needed for democratic legitimacy.
Similarly, political conflicts around broader resource allocation processes in some countries reflect this same tension between technical formula-based approaches to revenue sharing and deeply held social values. The failure to show how a technical formula was built on social values was one among several causes of an initial failure of Kenya’s Commission on Revenue Allocation to get legislative approval for changes to its revenue sharing formula several years ago. When governments ignore the moral commitments of citizens (whatever we may think of them), policy is bound to fall short, as recent analysis of the Indian government’s massive toilet-building scheme for rural sanitation has demonstrated.
Nevertheless, we should not exaggerate the conflict between technical and participatory foundations for legitimacy: formulas and CEA analyses may be complex, but they are ultimately based on certain fundamental social values. There must be a way to reconcile the values inherent in technical evaluation with additional values held by the society. Some agencies clearly recognize this. Even NICE, which pioneered the use of cost-effectiveness thresholds, understood early on that CEA must be part of a broader approach to evaluation, and thus complemented value-for-money assessments with its Social Value Judgments principles and Citizens Council.
However, recognizing this imperative is easier than determining how to implement it. Establishing and maintaining approaches that allow for a wide set of values and criteria to feed into HTA remain a constant challenge, as recent critiques of NICE at 20 years highlight. Moreover, better approaches for communicating HTA decisions and rationales to the public in terms of public reasons are sorely needed, particularly through engagement of the media. The ongoing challenges of justifying HTA decisions–and those of all government agencies–to the public are ever more pressing in the face of waning public trust in experts and government actors.
The role for technocratic approaches in health priority-setting and public policy more broadly
Agencies that engage in technical priority setting and resource allocation, such as health technology assessment agencies, must consider and learn from the politics of legitimacy as it emerges across countries and at different times if they are to be successful. Reconciling autonomy to pursue technical procedures with social legitimacy is not a one-off affair, but a constant negotiation. And it is not a challenge unique to any one sector, such as health policymaking. We can see this in the way that central banks, such as the European Central Bank, have evolved over time to provide greater transparency about their decision-making processes and to engage with a wider set of stakeholders. The same is true for revenue allocation agencies, supreme audit institutions, courts and even electoral agencies. While the manifestation of these tensions may differ across these actors and agencies, all strive to simultaneously maintain technical rigor and social legitimacy.
But we must also reflect on the status quo for most government decisionmaking and priority setting.
The problem that many societies face is not that they are dominated by unaccountable agencies pursuing technically advanced but illegitimate solutions. Rather, there is a dearth of evidence-based policymaking. Few institutions are empowered to make and implement such policies, and their autonomy to implement rigorous, evidence-informed approaches is frequently threatened. Thus, advancing more evidence-based approaches to government decisionmaking and priority-setting–in health and beyond–is an essential objective to support sound policymaking. But this objective must be accompanied by efforts to involve the public, meaningfully engage social values, and effectively communicate policy decisions in ways that are transparent, accessible, and grounded in public reason.
While there may be tensions between the autonomy of technical agencies and public legitimacy, they also can advance in tandem. The key question is how. How do we identify the right balance between agencies operating independently according to technical approaches and inclusion of lay perspectives and inputs? How should we pursue approaches to public engagement that adequately represent the breadth and depth of the people whose interests are at stake while safeguarding engagement efforts from the undue influence of powerful interest groups? And how can we effectively communicate to the public the position and underlying rationale of government decisions—including the values that underpin technical approaches—in ways that will be perceived as reasonable and acceptable? These remain ongoing challenges, and a fertile space for broader inquiry and research.