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Citizens’ juries can bring public voices on overdiagnosis into policy makingBMJ 2019; 364 doi: https://doi.org/10.1136/bmj.l351 (Published 30 January 2019)
Overdiagnosis challenges the social contract that underpins healthcare, and community voices are often missing from the relevant policy discussions
Citizens’ juries elicit the voices, values, and preferences of informed citizens who are presented with evidence based expert views
Jurors deliberate the evidence among themselves before formulating their opinions and recommendations
Citizens’ juries can elucidate public values that can then be used to inform policies and practices to manage the risks of overdiagnosis
The findings can contribute to guideline development and proposed changes to disease thresholds
The process of citizens’ juries align with the basic tenets of evidence based medicine and can broaden and improve the dialogue around medical uncertainty
Unnecessary and harmful interventions from overdiagnosis challenge the social and ethical contract that underpins healthcare.12 Strategies to tackle overdiagnosis from population screening should engage with the public and consider its values and concerns.3 Most high income countries develop evidence based policies to guide population screening using stringent criteria that are applied by expert panels to review the available technical evidence. Similarly, if perhaps not so systematically, expert panels collect and analyse pathophysiological and clinical evidence to determine disease thresholds and definitions.4 But in both cases the final judgments on the acceptability and legitimacy of different screening policies and disease definitions are informed by the values of the decision makers, because the relative balance of harms and benefits of making changes are also subjectively weighed and valued.567 For the deliberation sponsors (researchers, government, or other agencies), putting matters to the public can promote greater social and political engagement, public accountability, and confidence in the decision ultimately made.
Public engagement occurs on a spectrum of participation in events that aim to consult the public (consumer forums or patient groups) to more formal deliberative methods such as citizens or community juries that seek to bring lay people into structured deliberation to tackle key complex problems (box 1).8 In this paper, we explore some of the advantages and limitations of using citizens’ juries to inform policy making in the complex policy areas of overdiagnosis.9
The characteristics of citizens’ juries
First developed by the Jefferson Centre in 1970s, citizens’ juries have been used to tackle issues such as reproductive technology, xenotransplantation, biobanking,81325 and overdiagnosis.10111420 Several approaches exist, but at a minimum a group of 12-15 people are selected to meet over 2-4 days to consider and respond to a specific question. A topic, rather than an individual, is “on trial.”33 All citizens’ juries have two phases: the first focuses on educating participants, the second on deliberation. In the first phase jurors are provided with balanced factual information from expert witnesses (of whom they can ask questions and seek clarification), such that a diverse range of potentially conflicting perspectives are considered.2534 In the second phase the group work together in facilitated session to produce a verdict or set of recommendations. Citizens’ juries create the conditions for people to move beyond superficial arguments and suspicion of vested interests to understand the complexity of medical decision making and then to reflect on their own values and what is important to their communities. Consensus is encouraged but not essential; dissenting views and minority positions are included in the final report.
What distinguishes deliberative methods from other forms of public engagement is a process of iterative two way exchange between representatives of the public and the deliberation sponsor. Like all engagement methods, however, citizens’ juries have been criticised.35363738 The most common concerns are about the selected group being representative of the citizenry and whether a group of lay people can overcome deficits in expertise to make judgments that truly reflect their values and informed preferences.17 Juries of 12-24 people cannot possibly represent a statistically characterised sample of the general public or the prevalence of views. Rather, they offer insights into how and why informed citizens prioritise concerns about complex issues like overdiagnosis and provide explanations for divergence in opinions. Participants should be recruited to capture diversity of experiences and backgrounds in a community, and the deliberation processes organised so as to redress power imbalances as much as is feasible.39 When conducted in this way, citizens’ juries can reveal and capture key community concerns and arguments about current or proposed policy directions and enhance accountability in decision making.
Citizens’ juries to consider screening and overdiagnosis
They are appropriate when the evidence is uncertain, and experts or stakeholder groups (or both) disagree on its implications. In relation to overdiagnosis, citizens’ juries have been convened primarily by health researchers to provide research evidence for policy making that articulates values and explains the reasoning and preferences of an informed public. Juries can help those who develop screening guidelines to understand why patients go against expert advice and can inform them of the factors that need to be explained and explicitly considered to retain public trust.
Citizens’ juries are designed to allow participants to first be informed, and then to discuss, reflect, and clarify their own views about a topic rather than recording people’s top-of-mind or intuitive reactions to contentious problems (like focus groups or mass surveys). In response to the question: “Should the government offer free mammography screening to all women aged 40-49?” surveys would likely capture the prevailing public mood as to the importance of helping women access preventive health services rather than a nuanced view on the implications of lowering the age related entry point for the national mammography screening programme. A citizens’ jury comprising women who had never participated in screening convened in Otago, New Zealand, to answer this question. Almost all of the women had been in favour of mammography screening for women aged 40-49 at the start of the jury. By the end of its deliberations, however, the jury voted 10 to 1 against the proposal to lower the entry age because of the potential for harms and the lack of evidence of lives saved in that age group (table 1).10
Citizen juries emphasise public values and social concerns that are not part of the evidence base but could be of great importance to policy implementation. Two juries composed of Australian women aged 70-74 voted to retain invitations to mammography screening for their age group, explicitly placing a low priority on the potential for overdiagnosis in their decision making (table 1).11 The reasons the jurors provided show that, once established, organised preventive health services have great symbolic value, and epidemiological evidence of an unfavourable balance of benefit to harm may not be enough to convince people of the need to stop.
Although independent evidence based expert advice on population screening is essential, good policy also relies on public trust. Through their exposure to evidence and expert opinion, the participants in these juries about mammography understood that for population screening services to be effective there must be tolerance for some degree of overdiagnosis. The women’s tolerance threshold, however, seemed to be higher than that of the clinical research experts who were advising against screening. The benefits of screening, as well as the harms of screening related overdiagnosis, are experienced by otherwise healthy people. For reasons of transparency and accountability, the values and priorities of potential service users should be considered and included in guideline development and programme implementation.
Choosing jurors, types of evidence, and framing jury questions
The policy relevance of a citizens’ jury convened to tackle an important issue such as overdiagnosis will depend on three important factors: how the topic or question is posed; who sits on the jury and how they are recruited; and the engagement of policy decision makers.
Framing question for the jurors
In the juries that we have conducted on screening and overdiagnosis the question, expert witnesses, and the evidence presented to jurors were determined by a steering committee comprising neutral experts and representatives of stakeholders from each side of the existing debates. The committee, organisers, and expert witnesses worked together to ensure that the question put to the jury was framed as “neutrally” as possible so that the verdict was less likely to be subsequently dismissed. The quality and reputation of the experts who provided the testimony and the structured process through which they reviewed and moderated each other’s presentations helped to ensure that all views presented to jurors were relevant and could be argued from the evidence.
Not every issue is suitable for deliberation. Broadly speaking, citizens’ juries on screening and overdiagnosis have answered two somewhat different but overlapping policy questions: those that explicitly focus on resource allocation and those about which policy options are most justifiable and perceived to be legitimate (table 1).12 Juries are most useful for public engagement when the policy options require a deep consideration of both values and evidence.13
Juror characteristics and the type of evidence produced
Citizens’ juries construct a form of “mini-public,” such that composition of participants will determine how representatives the outcome is. Three juries held in Sydney, Australia, on PSA testing and overdiagnosis risks show the difference between those composed of “targeted” or “general” public (table 1).14
One of the juries comprised men of screening age (potential PSA test users) and two were composed of participants of mixed genders and ages. All juries prioritised allocating resources to support GPs to adopt an active role in supporting individual men to make decisions about PSA. But the two mixed juries wanted all the information on potential harms and benefits of PSA testing to be provided to men before they took the PSA test, whereas the all male jury did not want men burdened with uncertain and detailed information about risks associated with diagnosis and treatment until they had an adverse test result. This example shows how a jury composed of service users can provide a different perspective and insights into a different recommendation from that of one composed of members of the public who may not be directly affected by the outcome.
The findings of juries of service users provide insights into what changes to the status quo are likely to be acceptable to those affected. Juries comprising a broader range of citizens tend to reveal broader considerations, including the range of issues that may be important for weighing the fairness of resource re-allocation against a background of competing priorities.8
Involvement by policy decision makers
Policy makers do not convene citizens’ juries but tend to commission independent researchers. The explicit and public nature of the jury process and its reporting are important. It is hard to find anyone who is free from bias, and policy makers are no more likely to be neutral than researchers. Indeed, policy makers are more likely to be less skilled at setting up an objective or independent steering committee when subject to political or budgetary pressures. The juries described in table 1 were initiated by researchers, but all had clinical and policy stakeholders as expert witnesses or members of the steering committee. Public deliberation aimed at informing policy decisions around overdiagnosis should ideally involve the decision makers in the design or implementation. If the jury is organised as an independent research project then a subsequent process of “translation” or knowledge mobilisation may be required to inform decision makers of the content and significance of the verdict.15 We don’t mean to suggest that decision makers who engage with citizens’ juries should be bound by the jury verdict or that citizens’ juries cannot be legitimately done purely as research. But they are more likely to inform policy decisions if those involved recognise the value, role, and limitations of the jury outcomes in larger political processes.16 Individual clinicians and healthcare managers may find value in juries performed as research as a way to synthesise the diverse values that patients may consider when weighing up screening decisions.
Informing policy around overdiagnosis
Where expert opinion and public opinion diverge, citizens’ juries are valuable for understanding why and potentially informing future decisions about public communication and service delivery requirements to deal with patient concerns. The provision of facts, exposure to well reasoned and sometimes opposing expert opinions, and commitment to working through persistent disagreements (rather than dismissing them as deficits in understanding) can help to rebalance information gaps about overdiagnosis and the discrepancy of power between experts, decision makers, and the community affected.1819
Between us, we have conducted more than 15 citizens’ juries, several of which have considered overdiagnosis.1114202122 A consistent observation has been that members of the public report great surprise at the level of uncertainty embedded in medical practice. And particularly how new technologies and medical tests can create more uncertainties, rather than resolve concerns. Most people in high income countries like Australia are encultured to trust medical tests and their doctors.23 They believe that doctors know the “right” thing to do.24 Trust in doctors is inevitably the resource that people draw on when decisions need to be made in the face of conflicting or uncertain evidence. Citizens’ juries enable them to pull back the curtain on medical evidence and engage more meaningfully in screening policy debates. In our experience, in deliberations people first looked for the embedded interests that could drive apparent differences in expert opinion. But ultimately most jurors came to both understand and feel sympathy for GPs and other care providers who must manage medical uncertainty on a day-to-day basis.
If done well, citizens’ juries are an effective means to conduct research that informs guideline development for population screening and disease threshold determination.1225 Much could be achieved to tackle the social and ethical dimensions of overdiagnosis if those charged with organising and regulating these processes made a commitment to formally consider the values and preferences of well informed members of the public and to understand the complex trade-offs entailed. Procedurally, citizens’ juries are explicit about the limits of medicine and the pervasiveness of medical uncertainty. This fits with the basic tenets of evidence based medicine2627 and offers an authentic means to tackle issues related to overdiagnosis.28
In addition, citizens’ juries have the potential to uncover other ways that health services provide value to the public, which need to be explicitly mentioned and accounted for in the implementation of policy.29 Bringing the public into deliberation about overdiagnosis can broaden and improve the dialogue and make the reasons for decisions about resource allocation and potential withdrawal of services more clear and transparent, thus promoting public trust and partnerships at a time when trust in science and medical expertise seems to be in decline.303132
Contributors: All authors contributed to the conceptualisation of the paper. CD led the drafting of the paper, with substantial contributions from RT and LR. All authors commented and contributed to the revision of the final submitted version. CD is the guarantor.
Funding: This work was supported by NHMRC CRE 1104136 and NHMRC programme grant 1106452. The funder had no role in the conceptualisation and drafting of this paper or the decision to submit for publication.
Competing interests: All authors have completed the Unified Competing Interest form (available on request from the corresponding author) and declare: no support from any organisation for the submitted work; no financial relationships with any organisations that might have an interest in the submitted work in the previous three years, no other relationships or activities that could appear to have influenced the submitted work
Transparency declaration: The lead author affirms that the manuscript is an honest, accurate, and transparent account of the studies being reported; that no important aspects of the study have been omitted; and that any discrepancies from the study as planned (and, if relevant, registered) have been explained.
Data sharing: These are no further data available for sharing.