The recent proliferation of calls for public engagement in health policy making has outpaced careful theorising about the normative foundations of the practice. Analysing policy examples of resource allocation, health care reform, and emergency preparedness, this chapter argues that public engagement is best justified as means of shoring up different weak points in the representative policy-making process. Because different weak points have distinct features, the ways in which they can be addressed by public engagement are varied. What makes a particular approach to public engagement inappropriate in one context can be a virtue in another.
In 2017, a panel convened by US National Academies of Science and Medicine published a report on the science, ethics, and governance of human genome editing. Human genome editing, as defined by the report, refers to a ‘suite of methods’ used ‘for making precise additions, deletions, and alterations to the genome – an organism’s complete set of genetic material’. 2 Though clinical applications of genome editing to treat disease and disability hold great promise, they also raise ethical concerns. These concerns are especially pronounced in the context of germline genome editing, which creates changes to the genome that can be inherited by future generations.
The National Academies report laid out principles and recommendations for the governance of human genome editing in the US and other countries. Notably, the report included an entire chapter and five separate recommendations addressing the need for public engagement in various aspects of the regulation and oversight of human genome editing. These recommendations included that ‘public participation should be incorporated into the policy-making process for human genome editing’ and that ‘extensive and inclusive public participation should proceed clinical trials for any extension of human genome editing beyond treatment or prevention of disease and disabilities’. 3
By all appearances, the report displayed a deep commitment to the practice of public engagement. Yet shortly following its release, the report came under attack for failing to recommend a substantial enough role for the public in fundamental policy decisions about the future of human genome editing. Writing on Scientific American’s blog, Jim Kozubek accused the report’s authors of failing to include the ‘crucial recommendation’ that the public should have a say in the decision of whether human genome editing should move forward at all. 4 The director of the Center for Genetics and Society echoed Kozubek’s sentiments, arguing that the report gives scientists and policymakers a ‘green light for proceeding with efforts … to engineer the genes and traits that are passed on to future children and generations’ but ‘excludes the public from participation in deciding whether human germline modification is acceptable in the first place’. 5
The episode was striking – less for the disagreements it highlighted than for the shared assumptions it revealed. Not long ago, a call for multiple layers of public engagement in the regulation and oversight of a complex emerging medical technology might have seemed radical. Indeed, a 2005 National Academies report on embryonic stem-cell research, a similarly controversial issue, did not include the phrase “public engagement” or any of its familiar variants. 6 But by 2017, no one appeared to question the notion that there ought to be a substantial degree of public engagement in policy decisions about the future of human genome editing. The only thing left to debate, it seemed, was just how much public engagement there ought to be.
The discussion around the human genome editing report reflects the state of a larger conversation about the role of public engagement in health policy. Today, there is a growing consensus among policymakers, civil society leaders, scholars, and other stakeholders that the public ought to be substantially involved in a range of health policy decisions. This trend is reflected in the activities of government agencies and institutions across the globe, which involve members of the public in a range of policy decisions related to health care and research. 7 Unfortunately, the proliferation of opportunities for public engagement in health policy has outpaced careful theorising about the normative foundations of the practice. As a result, despite widespread embrace of the idea that public engagement in health policy making is a good thing, there is little certainty about why it is a good thing, and there remains a striking lack of clarity about what the specific goal (or goals) of engagement ought to be. As calls for public engagement in health policy continue to multiply, this lack of normative clarity presents a barrier to rational policy development in this area.
Our goal in this chapter is to shed light on the normative foundations of public engagement in health policy making, focusing in particular on justifications for public engagement that appeal to democratic values. We are not the first to undertake this task, but two features of our approach distinguish it from most previous efforts. First, we pay particular attention to clarifying the relationship between public engagement mechanisms and traditional institutions of representative democracy – namely, elected legislatures and agencies run by professional administrators. Proponents of public engagement in health policy often move too quickly from the widely accepted premise that democracy requires popular control over government to the more controversial conclusion that democracy requires direct public involvement in the work of agencies and institutions responsible for policy development, failing to reckon with the fact that democratic states already have institutions in place to channel popular input into policy-making and oversight processes. 8 This approach is flawed for several reasons, not least of which is that it fails to offer practical guidance to policy-makers considering how to implement public engagement mechanisms in the context of a representative democracy.
Taking this contextualised approach to describing the place of public engagement in a representative democracy yields the second distinctive feature of our account. Drawing on a theory of participatory governance developed by Archon Fung, 9 we suggest that public engagement mechanisms are best viewed as means of shoring up different weak points in the representative policy-making process. Because different weak points have distinct features, the ways in which they can be addressed by public engagement are varied. Thus, while some have sought to locate a single or primary aim for public engagement in health policy making, we defend a more pluralistic approach. Analysing policy examples of resource allocation, health care reform, and emergency preparedness and response, we demonstrate that there are multiple defensible aims for public engagement in health policy and that each is best served by a different approach. We show that there is no one-size-fits-all approach to be had, and that different desiderata of public engagement activities – such as being widely inclusive and being deliberative – are often in tension with each other.
The term “public engagement” is itself somewhat ambiguous, as is its relationship to terms like “public consultation” and “public deliberation”. We follow Rowe and Frewer in defining public engagement broadly as ‘the practice of involving members of the public in the agenda-setting, decision-making, and policy-forming activities of organizations and institutions responsible for policy development’. 10 11 We also follow Rowe and Frewer in using the term “public consultation” to denote a particular type of public engagement marked by the one-way flow of information from members of the public to the sponsors of the engagement initiative, typically public officials. We use the term “public deliberation” to denote a type of public engagement in which information flows bi-directionally between sponsors and the public (and between members of the public themselves) in some type of structured dialogue. Unlike public consultation, which is designed to elicit more or less “raw” ideas and opinions from the public, public deliberation is typically intended to refine the ideas of the participating public. 12
While it useful to distinguish consultation and deliberation in principle, it is important to recognise that elements of the two types can be combined in practice. For instance, as part of its Voice of the Patient initiative, the US Food and Drug Administration (FDA) holds public meetings with representatives of different patient populations. 13 The meetings combine in-depth exchanges between small panels of patients and FDA officials (deliberation) with polling questions directed to a larger audience (consultation). In addition to these hybrid models, there are forms of public engagement which are largely consultative but with some opportunities for dialogue between sponsors and the public. Town hall meetings hosted by public officials serve primarily as an opportunity for citizens to express their concerns to officials. But citizens can also use the meetings to ask questions of officials and to engage in brief exchanges.
Some have suggested that highly structured, deliberative methods of public engagement are categorically preferable to these more consultative methods, given that the former are thought to generate more reasoned and reflective feedback. 14 As we will show, however, both deliberative and consultative methods of engagement have strengths and limitations. By focusing our analysis on the broad category of public engagement, we mean to allow for the possibility that either type of public engagement may be well suited to a particular policy context.
Justifications of public engagement in health policy making often appeal to democratic values. In particular, many proponents claim that public engagement in health policy is justified because it advances democratic legitimacy. The strongest version of this claim is that public engagement is necessary for achieving democratic legitimacy. As the authors of one study put it, ‘engagement of a large number of citizens of diverse perspectives is required for legitimate health-policy development’. 15 A weaker version of the claim – one that treats legitimacy as a quality that varies by degree rather than a threshold concept – is that public engagement necessarily makes the democratic policy-making process more legitimate, even if that process is somewhat legitimate without public engagement. 16 These claims contain an important kernel of truth in that there is a link between democratic legitimacy and public engagement. But whereas that link is sometimes treated as categorical, we argue that it is contingent on certain factors that do not exist in every context. In short, we argue, public engagement is not always needed to achieve or enhance democratic legitimacy; understanding when and why it serves this function is a crucial step towards understanding the oft-cited but under-theorised legitimacy-based rationales for public engagement in health policy making.
To clarify the relationship between public engagement and democratic legitimacy, we need to begin with a working definition of democratic legitimacy. For present purposes, we will assume that democratic legitimacy requires that citizens exercise control over their government, directing its actions in accordance with their own values and interests. 17 Some democratic theorists might wish to elaborate on this account. For instance, deliberative democrats might insist that legitimacy requires that popular control be exercised discursively. 18 But the notion that democratic legitimacy requires popular control is fundamental to most accounts of democracy. A government that was not subject to popular control might pass wise and just laws, but it would not be democratic. Realising the democratic ideal requires ‘giving kratos to the demos, power to the people’. 19
On this understanding of democracy, one argument for justifying public engagement on the basis of democratic legitimacy would be the following:
Democratic legitimacy requires popular control over government. Citizens cannot exercise popular control over government unless they are directly engaged in the work of the agencies and institutions responsible for policy development. Thus, achieving democratic legitimacy requires public engagement in the work of the agencies and institutions responsible for policy development.
Democratic legitimacy requires popular control over government.
Citizens cannot exercise popular control over government unless they are directly engaged in the work of the agencies and institutions responsible for policy development.
Thus, achieving democratic legitimacy requires public engagement in the work of the agencies and institutions responsible for policy development.
Of course, one could reject the basic idea of representative democracy on the grounds that representative institutions do not actually enable popular control. However, it seems unlikely that most proponents of public engagement in health policy would want to defend their position via an attack on the normative foundations of representative democracy. More importantly, there are good prima facie reasons for preferring representative democracy to other forms democratic control. Some of these reasons are practical. In most democratic countries there is a cultural preference for representative democracy. Moreover, despite its shortcomings, some of which we discuss ahead, representative democracy has shown itself to be a feasible means of democratic control on the scale of modern states. There are also moral reasons that can be offered in support of representative democracy, chief among which is that a one-person, one-vote system is a good way of instantiating political equality among citizens. If this is correct, the second premise of the foregoing argument is too strong. Not only is representative democracy a means of enabling popular control over government, but also it is one supported by practical and moral reasons.
What about the more modest argument, suggested earlier, which appeals to the notion that legitimacy varies by degree in a political system? That argument might be formulated as follows:
We should strive to make government as legitimate as possible. Increasing the degree of popular control over government increases democratic legitimacy. Public engagement in the work of the agencies and institutions responsible for policy development increases popular control over government. Thus we ought to pursue public engagement in the work of the agencies and institutions responsible for policy development.
We should strive to make government as legitimate as possible.
Increasing the degree of popular control over government increases democratic legitimacy.
Public engagement in the work of the agencies and institutions responsible for policy development increases popular control over government.
Thus we ought to pursue public engagement in the work of the agencies and institutions responsible for policy development.
A weakness of both of these arguments is that they fail to reckon with the central role of representative institutions in modern democracies, and thus move too quickly from the notion that there ought to be popular control over government to the conclusion that popular control ought to be exercised by way of public engagement. This way of arguing not only muddles the legitimacy-based rationales for public engagement in health policy making but also offers little practical guidance to the government sponsors of public engagement activities who are typically operating in the context of representative institutions. To make the case for public engagement in a representative democracy, it isn’t enough to show that democratic legitimacy requires popular control of the policy-making process. One must show when and why existing institutions fail to realise this goal and how public engagement can help.
One way of answering these questions has been suggested by Archon Fung, who argues that various types of public engagement can be used not to replace representative institutions, nor to add to representative institutions when those institutions are working well, but to address particular deficits that can arise in the representative policy process. Fung summarises that process as follows:
[C]itizens have (1) interests and (2) preferences over policy options that they think will advance those interests. They (3) signal these preferences to government by voting in periodic elections for parties and politicians whose programs most closely match their preferences. These electoral signals generate mandates for representative politicians to make (5) policies to advance these interests. Under the separation of powers between legislative and executive functions, (6) agencies staffed by professional administrators are charged with executing these policies, which generate (7) outcomes that advance the (1) interests that begin this process.
[C]itizens have (1) interests and (2) preferences over policy options that they think will advance those interests. They (3) signal these preferences to government by voting in periodic elections for parties and politicians whose programs most closely match their preferences. These electoral signals generate mandates for representative politicians to make (5) policies to advance these interests. Under the separation of powers between legislative and executive functions, (6) agencies staffed by professional administrators are charged with executing these policies, which generate (7) outcomes that advance the (1) interests that begin this process. 23
In the real world, of course, ideal conditions rarely obtain: citizens are lamentably ill-informed about basic aspects of policy and politics; campaigns are conducted in soundbites rather than reasoned exchanges over competing policy positions; administrators often lack the resources they need to successfully implement the policies they are charged with enacting; and so on. As a result of these and other challenges, links in the chain of the representative policy-making process can stress and break.
Fung notes several characteristically weak links in the chain. First, owing to ignorance, irrationality, or a general lack of interest in the political process, citizens may have unclear or unstable preferences about which policies are likely to advance their interests in a particular area. Thus, even if citizens do elect politicians who pass their preferred policies, those policies will not reliably advance citizens’ underlying interests. Under these conditions, even though citizens do influence the policy-making process, they exert only what Pettit calls ‘wayward influence’ rather than control towards achieving some desired end. 24
Second, even if citizens have coherent preferences, periodic elections provide infrequent and blunt signals of those preferences to politicians. 25 Thus, even a politician acting in good faith who endeavours to be responsive to the preferences of her constituents may not know what those preferences are. Third, even if voters form coherent preferences and politicians legislate accordingly, it is possible that administrators will fail to implement policies in a way that delivers desired results. One common source of failure, which Fung notes, is that in some policy areas, achieving a desired result depends on coordination with private actors in the economic sphere. Without buy-in from these actors, even skilled administrators may be limited in their ability to deliver results.
Against this backdrop, Fung argues that one way to conceptualise the place of public engagement in a representative democracy is as a means of supplementing the representative policy process to address these and other deficits. On this account, public engagement is justified on the grounds that it advances democratic legitimacy, not in every case but in those circumstances where it serves the type of reinforcing function Fung describes. The argument might be formulated as follows:
Democratic legitimacy requires popular control over government. In representative democracies, popular control is exercised primarily via the representative policy process. However, the representative policy process can suffer from deficits. In some circumstances, public engagement can address these deficits and help to reestablish popular control over government. Where it serves this reinforcing function, public engagement advances democratic legitimacy. Thus, there are some circumstances in which we ought to pursue public engagement.
Democratic legitimacy requires popular control over government.
In representative democracies, popular control is exercised primarily via the representative policy process.
However, the representative policy process can suffer from deficits.
In some circumstances, public engagement can address these deficits and help to reestablish popular control over government.
Where it serves this reinforcing function, public engagement advances democratic legitimacy.
Thus, there are some circumstances in which we ought to pursue public engagement.
In addition to grounding the link between democratic legitimacy and public engagement in a more plausible and nuanced way than competing accounts, this account has a second important benefit. Because it ties the value of public engagement activities to their potential to address particular problems in the representative policy process, it provides a framework for articulating the possible aims of public engagement. With these aims in mind, planners and policymakers have a set of standards that can be used to measure the benefits of one approach to public engagement against another.
We’ve argued that public engagement can be justified as means of addressing deficits in the representative policy process. In this section, we apply that idea to particular issues in health policy making. The individual examples show that there are areas of health policy in which public engagement activities can be used to address breakdowns in the representative policy process and thus vindicate the idea that public engagement can enhance the legitimacy of health policy development. Taken together, however, the examples show that an approach to public engagement that might be useful in addressing one deficit in the representative policy process will likely be ill-suited to addressing another.
The representative policy process depends on citizens being able to translate their interests and values into corresponding policy preferences. Where the contours of a given policy issue are clear and well understood by the public, we can expect this process of translation to work well. 26 However, where issues are technically complex, where the trade-offs at stake are unclear, or where people are uninformed or misinformed, difficulties can arise. One area where such difficulties are likely to arise is in decision making about the allocation of scarce health care resources.
The need to set limits on health care spending is acutely felt in publicly funded health insurance programs. Decisions about which interventions should be included in a basket of covered services require trade-offs that pit competing interests and values against one another. And in most cases, there will be multiple morally permissible ways to set coverage priorities, all of which will privilege some interests and values over others. Deciding on one coverage scheme over another will depend on which values are deemed to be most important. And in recent years, there has been increasing interest in soliciting the public’s values in making these decisions. 27
The difficulty is that even if policy-makers want public values to inform coverage decisions, most citizens lack clear views on which to draw. Those with limited experience in the health care system may not know how to value certain benefits against others. Preferences that citizens do have regarding benefits may be coloured by misinformation or confusion. Infamously, in the debates leading up to the passage of the Patient Protection and Affordable Care Act (ACA) in the US, a provision that would allow Medicare to reimburse providers for conducting consultations about end-of-life care was widely mischaracterised as establishing federal “death panels”. Understandably, many citizens voiced opposition to the notion of death panels, but those same citizens may have endorsed the benefit had they understood it. Finally, even if citizens do understand benefits well, they may have unrealistic or unstable preferences about how these benefits should be combined. For instance, citizens might wish for unfettered access to the newest and most expensive therapies with no out-of-pocket costs and without a higher tax burden: a set of desires which are not jointly realisable.
These challenges have been keenly observed by proponents of public engagement, who have sought to demonstrate that certain types of public deliberation can help people to form more coherent views about allocating health care resources. One well-known approach to public deliberation that has been used in this context is the “citizens’ jury”. Citizens’ juries involve a panel of 10–20 lay participants, recruited to be demographically representative of their community.
Lenaghan describes the process of a citizens’ jury as follows:
They are brought together for four days with a team of two moderators. They are fully briefed about the background to the question, through written information and oral evidence from witnesses. Jurors scrutinise the information, cross examine the witnesses and discuss different aspects of the question in small groups and plenary sessions.
They are brought together for four days with a team of two moderators. They are fully briefed about the background to the question, through written information and oral evidence from witnesses. Jurors scrutinise the information, cross examine the witnesses and discuss different aspects of the question in small groups and plenary sessions. 29
Another mechanism for encouraging deliberation about coverage policy is the Choosing Health Plans Altogether (CHAT) tool, developed by Goold and Danis. 31 The CHAT tool utilises a game-like structure, built around a board divided into different health benefit categories. Participants in the exercise distribute a limited number of markers across the board to indicate which benefits they would like included in the insurance package. Participants lack the markers to maximise each benefit area and are thus forced to make trade-offs in designing a benefits package. The exercise takes place in two rounds. First, participants choose benefits individually to suit their needs and the needs of their family. Second, the group works together to choose a benefits package that they believe will best suit the needs of the broader community. To help participants appreciate the implications of their choices, they are assigned random health event cards that ‘contain stories of illness episodes and explain the consequences of the benefit choices in relation to these events’. 32
Public engagement mechanisms like citizens’ juries and the CHAT tool have been shown to help ordinary citizens articulate informed, clear, and stable preferences with respect to complicated issues like health benefit design. But while these mechanisms have the clear virtue of enabling an uncommon degree of reflection on a difficult policy issue, they also have limitations. An unavoidable limitation of highly structured, deliberative exercises like citizens’ juries or the CHAT game is that they must be restricted to a relatively small number of participants to enable sufficient opportunities for debate and deliberation. Additionally, in order to ensure focused deliberation, the sponsors of these activities significantly shape the conduct of the exercise – they pre-select the question(s) to be addressed; they select sources of authoritative information; they structure the rules of deliberation. All of these features help to ensure that the deliberation stays on track, but increase the risk that sponsors will bias the results of the deliberation.
Ultimately, these highly structured deliberative exercises do not solve the challenge of uninformed or unstable preferences in the broader public; they solve the problem for a small subset of citizens. 33 This raises significant questions about how the results of the deliberations should be incorporated in the policy-making process. In principle, a legislature could delegate policy-making authority to a citizens’ jury, imbuing the jury’s decision with the force of law. So far as we know, however, citizens’ juries are rarely given this type of authority in practice. And indeed, as scholars have suggested, there are reasons for avoiding vesting citizens’ juries with such authority, chief among which is that they lack bonds of accountability and authorisation to the broader population that would be subject to their decision. 34 This leaves citizens’ juries to influence the policy-making process in indirect ways. One way in which citizens’ juries might influence the policy process is through media coverage of their activities. Thus, small-scale deliberation might be the catalyst for broader deliberation at a societal level. Though this is sometimes touted as an effect of deliberative exercises, there is little evidence to support it. 35 Another way in which public deliberation might influence the policy-making process is by officials citing the results of public deliberations as a source of democratic justification for their decisions. Ultimately, however, officials will turn to this justification only where citizens’ juries already have wide social acceptance.
There are no doubt areas of health policy in which citizens will have unclear or unstable preferences that might be improved through public deliberation. In other areas, however, the challenge is not that citizens do not have clear preferences but that elections provide an insufficient means of communicating their preferences to officials. An example of the latter challenge occurred after the 2016 federal elections in the US. Having won control of the presidency while retaining control of both branches of the legislature, Republicans were poised to repeal the ACA, which had been passed under the previous Democratic administration and had extended and strengthened insurance coverage for tens of millions in the US.
Following the elections, evidence from polls showed that the majority of Americans did not want to see the ACA repealed. 36 Nonetheless, relying solely on the election results to gauge public temperament, Republican lawmakers could perhaps assume that they had received a mandate to repeal the health care law. Alternatively, lawmakers might suspect that their constituents wished to see the ACA upheld, but harbour their own reasons – for example, ideological commitments, party loyalty, a desire to appease donors – for wanting to undo the law. Either way, election results alone gave no clear signal of popular preferences with respect the health care law, allowing a situation in which lawmakers’ behaviour could become untethered from the wishes of their constituents.
These circumstances created an opportunity in which public engagement mechanisms could be used to send a focused signal of citizens’ views about the ACA to their representatives. Unlike the examples of highly structured deliberation discussed earlier, the types of public engagement employed in this context were primarily consultative in nature, serving not to refine citizens’ inchoate opinions about a policy matter they knew little about but to signal clear preferences to their representatives. Citizens communicated their views about the law via petitions and submissions to open comment forums. However, the most notable form of public engagement that took place involved a series of town hall meetings hosted by members of Congress. In what became a major news story, dozens of town hall meetings hosted by lawmakers were packed with constituents explaining the ways in which they had come to depend on the ACA and expressing their anger about Republican plans to repeal the law.
The character of the often “tumultuous” town hall meetings was quite different than the controlled environment of a citizens’ jury. 37 Whereas citizens’ juries and similar mechanisms for facilitating public deliberation involve small groups of participants, carefully selected to mirror the demographic characteristics of residents in a given jurisdiction, the town hall meetings operated with an open-door policy and typically drew large crowds – sometimes more than could be accommodated in meeting rooms. Whereas citizens’ juries are structured to focus on a particular question, the citizens who attended the town hall meetings set the agenda. That the meetings were dominated by discussion of Republican plans for the health care law was not the sponsors’ choice but the attendees’. Whereas citizens’ juries are designed to refine opinions, the town halls functioned to communicate constituents’ strongly held views to their representatives.
As others have noted, all of these features make town hall meetings ineffective forums for careful deliberation about policy issues. 38 But these same features made town hall meetings effective mechanisms for amplifying the concerns of citizens, and for holding elected officials accountable. At a town hall meeting in Wisconsin, for instance, constituents got their representative to commit to maintaining popular provisions of the ACA. 39 Regardless of whether they are honoured, these sorts of commitments, made in public in response to questioning from constituents, can function as important measures for holding politicians accountable in subsequent elections. Additionally, though the town hall meetings were not deliberative in the same way that citizens’ juries are deliberative, they attracted a great deal of media coverage and commentary, and in this regard, arguably made an important contribution to deliberation at a societal level.
Against the tendency to treat highly structured forms of public deliberation as the gold standard of public engagement, the example of the town hall meetings shows the value of a more nuanced account of the relationship between democratic legitimacy and public engagement. There is more than one way in which public engagement can contribute to democratic legitimacy. And what makes a particular approach to public engagement inappropriate in one context can be a virtue in another.
The representative policy process can also suffer when administrators lack the expertise or resources they require to carry out policies they are charged with enacting. As noted, this type of failure is especially likely to occur when success in a particular policy area depends on cooperation from community-based and private-sector actors. Arguably, a number of health policy areas have these characteristics. One such area that has received increasing attention is public health emergency preparedness and response. As one commentator put it, ‘the process of actually preparing a community for an emergency is essentially a social undertaking that involves creating and strengthening relationships, partnerships, and collaborations throughout the community’. 40
The importance of community partnerships has long been recognised as an important component of public health planning. As a 2003 Institute of Medicine (IOM) report on the future of public health noted, ‘all partners who can contribute to action as a public health system should be encouraged to assess their roles and responsibilities, consider changes, and devise ways to better collaborate with other partners’. 41 In light of this goal, the report recommended ‘a new generation of intersectoral partnerships that also draw on the perspectives and resources of diverse communities and actively engage them in health action’. 42 Arguably, however, the need for this kind of partnership and coordination is even greater in the context of public health emergencies, where the capacity of public health agencies is likely to be taxed, and where a coordinated and rapid response is essential to crisis management. This point was emphasised by two recent IOM reports, and has been reflected in the emergency planning activities of a number of American cities and states. 43
Public engagement to develop the “social infrastructure” for emergency preparedness and response has a different aim and requires different approaches than the examples of public engagement discussed earlier. Rather than aiming at deliberative preference articulation or the communication of citizen preferences to elected officials, public engagement in this context is geared towards collective planning and agreement on the roles and responsibilities of different actors during a public health emergency. As Ruth Gaare Bernheim rightly notes, achieving this aim requires more than town hall meetings or one-off consultations; it requires long-term trust and relationship building between government, private-sector, and community-based actors. 44 One component of a public engagement strategy in this context might simply be public communication from government officials to the public about the available resources during a public health emergency. Another component might be a kind of joint strategising between public health officials and community members about how challenges might be handled. Gaare Bernheim offers planning for how to deal with deaths if normal funeral services have to be suspended as an example of a problem that community members and public health officials might work to solve together. 45
While citizens’ juries and similar mechanisms typically involve lay people with no vested interest in the topic under deliberation, the sorts of public engagement activities employed in emergency planning tend to involve a mix of laypersons and representatives of different community groups and organisations, including community health clinics, schools, advocacy organisations, and faith-based organisations. 46 Involving these sorts of “vested stakeholders” in a citizens’ jury would rightly be thought to bias the results of that exercise and undermine the extent to which its output could be interpreted as indicative of broader community values. However, in the context of emergency planning, where the aim of public engagement is to forge understanding and agreement on the roles that different actors will play in a crisis, there is good reason to involve stakeholders with knowledge of and connections to different social groups.
We have argued that that public engagement in health policy can be justified as a means of advancing democratic legitimacy, not categorically but in circumstances in which it can be plausibly shown to address a deficit in the representative policy process. Amid growing calls for public engagement in health policy making, our argument has two lessons worth emphasising. First, before implementing public engagement activities, policymakers and planners should clearly identify the particular problem or deficit they hope to address via public engagement. Is the goal to develop an understanding of what policies citizens would regard as advancing their interests and values if they had the wherewithal to carefully analyse those problems? Is the goal to build trust and collaboration between the public and officials to enable joint planning? Without some clear idea of how public engagement will enhance the legitimacy of the policy-making process, there can be no way of knowing which approach and which particular mechanisms of public engagement, if any, should be employed. The second lesson is that choosing a particular approach to public engagement involves making trade-offs. A public engagement mechanism cannot be maximally inclusive and ensure adequate opportunities for reasoned deliberation; it cannot be both carefully structured to focus on a particular set of questions and allow members of the public themselves to set the agenda. Having a clearer sense of the aims of public engagement can help policy-makers navigate these trade-offs, but it does not eliminate the need to make them.
Work on this chapter was completed while Matthew S. McCoy was a Caroline Miles Visiting Scholar at the Ethox Centre, University of Oxford.
Engineering National Academies of Sciences, Human Genome Editing: Science, Ethics, and Governance, 2017, 1, www.nap.edu/catalog/24623/human-genome-editing-science-ethics-and-governance.
National Academies of Sciences, Human Genome Editing.
Jim Kozubek, “The Public Should Have a Say in Allowing Modification of Our Germline Genetic Code,” Scientific American Blog Network, accessed May 4, 2017, https://blogs.scientificamerican.com/guest-blog/the-public-should-have-a-say-in-allowing-modification-of-our-germline-genetic-code/.
Institute of Medicine and National Research Council, Guidelines for Human Embryonic Stem Cell Research, 2005, www.nap.edu/catalog/11278/guidelines-for-human-embryonic-stem-cell-research.
Julia Abelson et al., “Public Deliberation in Health Policy and Bioethics: Mapping an Emerging, Interdisciplinary Field,” Journal of Public Deliberation 9, no. 1 (April 30, 2013).
A notable exception is Albert Weale, “Democratic Values, Public Consultation and Health Priorities: A Political Science Perspective,” in Equity in Health and Healthcare, ed. Adam Oliver (London: Nuffield Trust, 2003).
Archon Fung, “Democratizing the Policy Process,” in The Oxford Handbook of Public Policy, eds. Michael Moran, Martin Rein, and Robert E. Goodin (Oxford, UK: Oxford University Press, 2008).
Gene Rowe and Lynn J. Frewer, “A Typology of Public Engagement Mechanisms,” Science, Technology & Human Values 30, no. 2 (April 1, 2005): 251–90.
We use the terms “public participation” and “public involvement” roughly interchangeably with “public engagement”.
Rowe and Frewer, “A Typology of Public Engagement Mechanisms.”
Center for Drug Evaluation and Research, “The Voice of the Patient: A Series of Reports from FDA’s Patient-Focused Drug Development Initiative,” WebContent, accessed May 13, 2017, www.fda.gov/forindustry/userfees/prescriptiondruguserfee/ucm368342.htm.
Presidential Commission for the Study of Bioethical Issues, “Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology,” May 2016. https://bioethicsarchive.georgetown.edu/pcsbi/node/5678.html
Jeff Nisker et al., “Theatre as a Public Engagement Tool for Health-Policy Development,” Health Policy 78, no. 2–3 (October 2006): 258–71.
Chris Degeling, Stacy M. Carter, and Lucie Rychetnik, “Which Public and Why Deliberate? – A Scoping Review of Public Deliberation in Public Health and Health Policy Research,” Social Science & Medicine 131 (April 2015): 114–21.
Philip Pettit, “Varieties of Public Representation,” in Political Representation, ed. Ian Shapiro et al. (Cambridge: Cambridge University Press, 2010).
Cohen, Joshua, “Deliberation and Democratic Legitimacy,” in Deliberative Democracy: Essays on Reason and Politics, ed. James Bohman and William Rehg (Cambridge, MA: The MIT Press, 1997).
Pettit, “Varieties of Public Representation,” 61.
Craig Mitton et al., “Public Participation in Health Care Priority Setting: A Scoping Review,” Health Policy 91, no. 3 (August 2009): 219–28.
George Klosko, “Review Essay: Democracy and Liberty: Extending the Paradigm,” The Review of Politics 67, no. 1 (2005): 135–52.
Fung, “Democratizing the Policy Process,” 671.
Philip Pettit, On the People’s Terms: A Republican Theory and Model of Democracy (Cambridge: Cambridge University Press, 2012).
Fung, “Democratizing the Policy Process.”
Fung cites abortion and wealth redistribution as examples.
Craig Mitton et al., “Integrating Public Input into Healthcare Priority-Setting Decisions,” Evidence & Policy: A Journal of Research, Debate and Practice 7, no. 3 (August 1, 2011): 327–43, doi:10. 1332/174426411X591762; WHO, “Making Fair Choices on the Path to Universal Health Coverage,” 2014.
J. Lenaghan, “Involving the Public in Rationing Decisions. The Experience of Citizens Juries,” Health Policy 49, no. 1–2 (October 1999): 45–61.
Susan Dorr Goold et al., “Choosing Healthplans All Together: A Deliberative Exercise for Allocating Limited Health Care Resources,” Journal of Health Politics, Policy and Law 30, no. 4 (August 2005).
Marion Danis et al., “Eliciting Health Insurance Benefit Choices of Low Income Groups,” Economic and Political Weekly 42, no. 32 (August 11, 2007): 3331–9.
Similarly, as Lever rightly notes, deliberative forums can have educative benefits insofar as they teach participants how to deliberate effectively. But it is less clear that they serve as a mechanism for “reskilling” the broader population that does not participate. Annabelle Lever, “Democracy, Deliberation and Public Service Reform,” in The Future of Public Service Reform, ed. Henry Kippin and Gerry Stoker (London: Bloomsbury, 2013).
John Parkinson, “Hearing Voices: Negotiating Representation Claims in Public Deliberation,” The British Journal of Politics & International Relations 6, no. 3 (August 1, 2004): 370–88; Weale, “Democratic Values, Public Consultation and Health Priorities: A Political Science Perspective.”
Presidential Commission for the Study of Bioethical Issues, “Bioethics for Every Generation: Deliberation and Education in Health, Science, and Technology.” 2016.
Jessica Estepa, “Poll: Majority of Americans Want to Keep Obamacare,” USA TODAY, March 7, 2017, www.usatoday.com/story/news/politics/onpolitics/2017/03/07/poll-majority-americans-want-to-keep-obamacare/98854446/.
Matt Flegenheimer and Thomas Kaplan, “Republicans Charge into Resistance at Tumultuous Town Halls,” The New York Times, February 18, 2017, www.nytimes.com/2017/02/18/us/politics/town-hall-protests-obamacare.html.
Ruth Gaare Bernheim, “Public Engagement in Emergency Preparedness Planning and Response,” in Emergency Ethics: Public Health Preparedness and Response, ed. Bruce Jennings et al. (Oxford, New York: Oxford University Press, 2016).
Thomas Kaplan, “Angry Town Hall Meetings on Health Care Law, and Few Answers,” The New York Times, February 13, 2017, www.nytimes.com/2017/02/13/us/politics/affordable-care-act-sensenbrenner-republicans.html.
Gaare Bernheim, “Public Engagement in Emergency Preparedness Planning and Response,” 172.
Institute of Medicine, Guidance for Establishing Crisis Standards of Care for Use in Disaster Situations: A Letter Report, 2009, www.nap.edu/catalog/12749/guidance-for-establishing-crisis-standards-of-care-for-use-in-disaster-situations; “Crisis Standards of Care: A Systems Framework for Catastrophic Disaster Response” (Institute of Medicine, March 21, 2012), www.nationalacademies.org/hmd/Reports/2012/Crisis-Standards-of-Care-A-Systems-Framework-for-Catastrophic-Disaster-Response.aspx.
Gaare Bernheim, “Public Engagement in Emergency Preparedness Planning and Response.”
Institute of Medicine, Engaging the Public in Critical Disaster Planning and Decision Making: Workshop Summary, 2013, www.nap.edu/catalog/18396/engaging-the-public-in-critical-disaster-planning-and-decision-making.