Deliberative Public Engagement Research Articles

Neuroscience and Society: Supporting and Unsettling Public Engagement.

Advancing neuroscience is one of many topics that pose a challenge often called "the alignment problem"-the challenge, that is, of assuring that science policy is responsive to and in some sense squares with the public's values. This issue of the Hastings Center Report launches a series of scholarly essays and articles on the ethical and social issues raised by this vast body of medical research and bench science. The series, which will run under the banner "Neuroscience and Society," is supported by the Dana Foundation and seeks to promote deliberative public engagement, broadly understood, about neuroscience. As a social goal, deliberative public engagement is both ubiquitous and elusive-called for everywhere yet difficult to undertake at a national level on a complex scientific topic. To be meaningful, deliberative public engagement must occur in many locations in a society and be carried forward by many actors. Scholarly writing might contribute in several ways.

A golden opportunity for South Africa to legislate on human heritable genome editing

Background. South Africa (SA) currently has a golden opportunity to legislate on human heritable genome editing (HHGE), as the country is revising its assisted reproductive technology regulations. A set of sub-regulations that deals with HHGE, which could seamlessly slot into the current regulations, has already been developed. The principles underlying the proposed set of sub-regulations are as follows: HHGE should be regulated to improve the lives of the people and should not be banned; the well-established standard of safety and efficacy should be used in the regulation of HHGE; quality of life is what matters, and not preserving a ‘normal’ genome; parents’ reproductive autonomy must be respected; and equality of access to approved HHGE technology should be promoted. Objectives. To ascertain whether the proposed set of sub-regulations that deals with HHGE is aligned with public opinion in SA, and SA’s Bill of Rights. Methods. Public opinion in SA is determined with reference to a deliberative public engagement study on HHGE conducted among South Africans, and the relevant rights in the Bill of Rights are interpreted with reference to recent case law. Results. This proposed set of sub-regulations that deals with HHGE is aligned with public opinion in SA, and SA’s Bill of Rights. Conclusion. Despite the legal and ethical complexities of HHGE, the proposed set of sub-regulations provides a targeted and effective legislative approach. They fit seamlessly into the country’s existing health law framework, creating specific legal standards for HHGE that align with both public opinion and the country’s Bill of Rights.

What values drive communities’ nutrition priorities in a resource constrained urban area in South Africa?

BackgroundVoices of under-resourced communities are recognised as important yet are often unheard in decisions about healthcare resource allocation. Deliberative public engagement can serve as an effective mechanism for involving communities in establishing nutrition priorities. This study sought to identify the priorities of community members of a South African township, Soweto, and describe the underlying values driving their prioritisation process, to improve nutrition in the first 1000 days of life.MethodsWe engaged 54 community members (28 men and 26 women aged > 18 years) from Soweto. We conducted seven group discussions to determine how to allocate limited resources for prioritising nutrition interventions. We used a modified public engagement tool: CHAT (Choosing All Together) which presented 14 nutrition intervention options and their respective costs. Participants deliberated and collectively determined their nutritional priorities. Choices were captured quantitatively, while group discussions were audio-recorded. A thematic analysis was undertaken to identify the reasons and values associated with the selected priorities.ResultsAll groups demonstrated a preference to allocate scarce resources towards three priority interventions—school breakfast provisioning, six-months paid maternity leave, and improved food safety. All but one group selected community gardens and clubs, and five groups prioritised decreasing the price of healthy food and receiving job search assistance. Participants’ allocative decisions were guided by several values implicit in their choices, such as fairness and equity, efficiency, social justice, financial resilience, relational solidarity, and human development, with a strong focus on children. Priority interventions were deemed critical to supporting children’s optimal development and well-being, interrupting the intergenerational cycle of poverty and poor human development in the community.ConclusionOur study demonstrates how public engagement can facilitate the incorporation of community values and programmatic preferences into nutrition priority setting, enabling a responsive approach to local community needs, especially in resource constrained contexts. Findings could guide policy makers to facilitate more appropriate decisions and to improve nutrition in the first 1000 days of life.

Deliberative public engagement in Ghana: consultation processes and outcomes during the privatisation of water

Deliberative public engagement in Ghana: consultation processes and outcomes during the privatisation of water

OP64 NICE Listens: Engaging The Public On How To Address Health Inequalities In Health Technology Assessment And Guideline Development

IntroductionInvolving and engaging the public is an essential step to engender trust and confidence in HTA organizations. In 2021 the National Institute for Health and Care Excellence (NICE) launched NICE Listens, a new programme of deliberative public engagement seeking to address topics that have complex social, moral, or ethical dimensions. Health inequalities (HI), defined as unfair and avoidable differences in health across populations, was the first topic. The aim was to understand how the public would like NICE to act in regard to HI. Despite repeated attempts to tackle HI in England, the gaps in life expectancy between the most and least deprived continue to widen. NICE has committed to addressing HI in its five-year strategy and NICE Listens forms part of a comprehensive engagement strategy to understand how best to do this.MethodsTwenty-eight (28) members of the public from across England took part in four iterative two-hour online workshops, held fortnightly in late 2021. They consisted of both plenary and breakout sessions and incorporated a range of stimuli including trade-off exercises and interview clips with HI experts.ResultsThe findings show clear public support for HI being a high priority for NICE, albeit with limits on how and when HI should be addressed. Actions towards reducing HI should focus on supporting a preventative and systemic response. Importantly, there is a need for a transparent process for incorporating HI within NICE guidance as well as rigorous staff training in understanding and addressing HI. Recommending technologies that benefit the majority even when not accessible for all is acceptable if there are clear plans to manage access gaps.ConclusionsReducing health inequalities should be a high priority for NICE and other HTA organizations. Organizations should seek to have clear processes for embedding HI in decision-making. Priority should be given to actions that focus on prevention of ill health and those that have wider system impacts.

A deliberative public engagement study on heritable human genome editing among South Africans: Study results.

This paper reports the results of a public engagement study on heritable human genome editing (HHGE) carried out in South Africa, which was conducted in accordance with a study protocol that was published in this journal in 2021. This study is novel as it is the first public engagement study on HHGE in Africa. It used a deliberative public engagement (DPE) methodology, entailing inter alia that measures were put in place to ensure that potential participants became informed about HHGE, and that deliberations between the participants were facilitated with the aim of seeking consensus. A diverse group of 30 persons was selected to participate in the DPE study, which took place via Zoom over three consecutive weekday evenings. The main results are: Provided that HHGE is safe and effective, an overwhelming majority of participants supported allowing the use of HHGE to prevent genetic health conditions and for immunity against TB and HIV/Aids, while significant majorities opposed allowing HHGE for enhancement. The dominant paradigm during the deliberations was balancing health benefits (and associated improvements in quality of life) with unforeseen health risks (such as loss of natural immunity). The seriousness of a health condition emerged as the determining factor for the policy choice of whether to allow an application of HHGE. More generally, equal access to HHGE qua healthcare service featured as an important value, and it was uncontested that the South African government should allocate resources to promote scientific research into HHGE. These results are aligned with the policy principles for regulating HHGE in South Africa suggested by Thaldar et al. They call for urgent revision of South African ethics guidelines that currently prohibit research on HHGE, and for dedicated HHGE legal regulations that provide a clear and comprehensive legal pathway for researchers who intend to conduct HHGE research and clinical trials.

Deliberative public engagement in Ghana Consultation processes and outcomes during the privatisation of water

Deliberative public engagement in Ghana Consultation processes and outcomes during the privatisation of water

Public Trust, Deliberative Engagement and Health Data Projects: Beyond Legal Provisions

In England, a new scheme for collating and sharing General Practitioners’ data has faced resistance from various quarters and has been deferred twice. While insufficient communication and ambiguous safeguards explain the widespread dissatisfaction expressed by the public and experts, we argue how dwindling public trust can be the most damaging variable in this picture - with implications not only for this scheme, but for any future project that aims to mobilise health data for medical research and innovation. We also highlight the indispensability of deliberative public engagement on the values being prioritised in health data initiatives, the significance of securing social license in addition to legal assurances, and the lessons in it of global pertinence.

A virtual deliberative public engagement study on heritable genome editing among South Africans: Study protocol.

This article outlines the protocol for a prospective study for virtual deliberative public engagement on heritable genome editing in humans. The study intends to create a platform for a diverse group of 25–30 South Africans to engage with a facilitator and each other on 15 policy questions regarding heritable genome editing, with a focus on: a) the prevention of heritable genetic conditions; b) editing for immunity; and c) editing for enhancement. The aim is to understand the views on these issues so as to inform further research and policy, and to analyse the process and effect of deliberation on opinion. Participants will be expected to study the provided resource materials and pass the entrance exam—aligning with the protocols of the Harvard Personal Genome Project. In this way, the commitment, openness and basic knowledge of the candidates will be tested to ascertain whether they are suitable participants for the deliberative engagement.

How Would Low-Income Communities Prioritize Medicaid Spending?

Medicaid plays a critical role in low-income, minority, and medically underserved communities, particularly in states that have expanded Medicaid under the Affordable Care Act. Yet, the voices of underresourced communities are often unheard in decisions about how to allocate Medicaid's scarce resources, and traditional methods of public engagement are poorly suited to gathering such input. We argue that deliberative public engagement can be a useful tool for involving communities in setting Medicaid priorities. We engaged 209 residents of low-income, medically underserved Michigan communities in discussions about Medicaid spending priorities using an exercise in informed deliberation: CHAT (CHoosing All Together). Participants learned about Medicaid, deliberated in small groups, and set priorities both individually and collectively. Participants prioritized broad eligibility consistent with the ACA expansion, accepted some cost sharing, and prioritized spending in areas-including mental health-that are historically underfunded. Participants allocated less funding beyond benefit coverage, such as spending on healthy communities. Participants perceived the deliberative process as fair and informative, and they supported using it in the policy-making process. The choices of participants from low-income, medically underserved communities reflect a unique set of priorities and suggest that engaging low-income communities more deeply in Medicaid policy making might result in different prioritization decisions.

Evidence, values, and funding decisions in Canadian cancer systems.

Expenditure on cancer therapies is rising rapidly in many countries, particularly for cancer drugs. In recent years, this has stimulated a global debate among the public, patients, clinicians, decision-makers, and the pharmaceutical industry on value, affordability, and sustainability propositions relating to cancer therapies. In this article, we discuss some recent developments in evidence-based approaches to priority setting and resource allocation in Canadian cancer systems. These developments include new methods for deliberative public engagement, generating and using real-world evidence, multi-criteria decision analysis, and handling uncertainty with evidence for gene therapies.

Public perspectives on disinvestments in drug funding: results from a Canadian deliberative public engagement event on cancer drugs

BackgroundDecisions relating to the funding of new drugs are becoming increasingly challenging due to a combination of aging populations, rapidly increasing list prices, and greater numbers of drug-indication pairs being brought to market. This is especially true in cancer, where rapid list price inflation is coupled with steeply rising numbers of incident cancer cases. Within a publicly funded health care system, there is increasing recognition that resource allocation decisions should consider the reassessment of, and potential disinvestment from, currently funded interventions alongside new investments. Public input into the decision-making process can help legitimize the outcomes and ensure priority-setting processes are aligned with public priorities.MethodsIn September 2014, a public deliberation event was held in Vancouver, Canada, to obtain public input on the topic of cancer drug funding. Twenty-four members of the general public were tasked with making collective recommendations for policy-makers about the principles that should guide funding decisions for cancer drugs in the province of British Columbia. Deliberative questions and decision aids were used to elicit individuals’ willingness to make trade-offs between expenditures and health outcomes.ResultsParticipants discussed the implications of disinvestment decisions from cancer drugs in terms of its impact on patient choice, fairness and quality of life. Their discussions indicate that in order for a decision to disinvest from currently-funded cancer drugs to be acceptable, it must align with three main principles: the decision must be accompanied by significant gains, described both in terms of cost savings and opportunities to re-invest elsewhere in the health care system; those who are currently prescribed a cancer drug should be allowed to continue their course of treatment (referred to as a continuance clause, or “grandfathering” approach); and it must consider how access to care for specialized populations is impacted.ConclusionsThe results from this deliberation event provide insight into what is acceptable to British Columbians with respect to disinvestment decisions for cancer drugs. These recommendations can be considered within wider health system decision-making frameworks for funding decisions relating to all drugs, as well as for cancer drugs.

Sharing linked data sets for research: results from a deliberative public engagement event in British Columbia, Canada.

IntroductionResearch using linked data sets can lead to new insights and discoveries that positively impact society. However, the use of linked data raises concerns relating to illegitimate use, privacy, and security (e.g., identity theft, marginalization of some groups). It is increasingly recognized that the public needs to be consulted to develop data access systems that consider both the potential benefits and risks of research. Indeed, there are examples of data sharing projects being derailed because of backlash in the absence of adequate consultation. (e.g., care.data in the UK).Objectives and methodsThis paper describes the results of a public deliberation event held in April 2018 in Vancouver, British Columbia. The purpose of this event was to develop informed and civic-minded public advice regarding the use and the sharing of linked data for research with a focus on the processes and regulations employed to release data. The event brought together 23 members of the public over two weekends.ResultsParticipants developed and voted on 19 policy-relevant statements. Voting results and the rationale behind any disagreements are reported here. Taken together, these statements provide a broad view of public support and concerns regarding the use of linked data sets for research and offer guidance on measures that can be taken to improve the trustworthiness of policies and process around data sharing and use.ConclusionsGenerally, participants were supportive of research using linked data because of the value they provide to society. Participants expressed a desire to see the data access request process made more efficient to facilitate more research, as long as there are adequate protections in place around security and privacy of the data.

Addressing the affordability of cancer drugs: using deliberative public engagement to inform health policy

BackgroundHealth system expenditure on cancer drugs is rising rapidly in many OECD countries given the costly new treatments and increased rates of use due to a growing and ageing population. These factors put considerable strain on the sustainability of health systems worldwide, sparking public debate among clinicians, pharmaceutical companies, policy-makers and citizens on issues of affordability and equity. We engaged Canadians through a series of deliberative public engagement events to determine their priorities for making cancer drug funding decisions fair and sustainable in Canada’s publicly financed health system.MethodsAn approach to deliberation was developed based on the McMaster Health Forum’s citizen panels and the established Burgess and O'Doherty model of deliberative public engagement. Six deliberations were held across Canada in 2016. Transcripts were coded in NVivo and analysed to determine where participants’ views converged and diverged. Recommendations were grouped thematically.ResultsA total of 115 Canadians participated in the deliberative events and developed 86 recommendations.Recommendations included the review and regular re-review of approved drugs using ‘real-world’ evidence on effectiveness and cost-effectiveness; prioritisation of treatments that restore patients’ independence, mental health and general well-being; ensuring that decision processes, results and their rationales are transparent; and commitment to people with similar needs receiving the same care regardless of where in Canada they live.ConclusionsThe next steps for policy-makers should be to develop mechanisms for (1) re-reviewing effectiveness and cost-effectiveness data for all cancer drugs; (2) making disinvestments in cancer drugs that satisfy requirements relating to grandfathering and compassionate access; (3) ensuring fair and equitable access to cancer drugs for all Canadians; and (4) fostering a pan-Canadian approach to cancer drug funding decisions.

Public views and recommendations on the use of linked data for research: preliminary results from a public deliberation engagement

IntroductionThe use of linked data for research is increasing, including in complexity of requests. Rules around access to and use of data necessarily trade-off risks related to privacy to achieve social benefits. Including informed and civic-minded public recommendations that consider different perspectives on privacy and benefit will improve related policy.
 Objectives and ApproachPopulation Data BC is conducting a deliberative public engagement regarding the use of complex linked data for research. Members of the public will be provided with written materials and hear speakers outlining considerations from multiple perspectives in data access and use, including benefits for health research, risks to privacy, and implications for disability and minority groups. Participants in the deliberation will then discuss questions about the use of linked data and ideas around principles for that use in small and large groups, and develop recommendations for data sharing policies.
 ResultsWe will be sharing our preliminary analysis of the public deliberation results at the conference. The public deliberation encourages the participants to develop policy recommendations that respect diversity of perspectives while negotiating constructive advice. It asks the group to make recommendations and to identify and explore issues on which the group has persistent disagreement. We will discuss insights into how the public values the use of data linkage and under what conditions such use becomes problematic. For example, we are hoping to gain insight about how publics determine if a project is in the public interest, or conversely, how a project may pose unacceptable harm.
 Conclusion/ImplicationsChanges in available data and increasing ability to link data makes it essential to include public views in systems of data access governance. Understanding the hopes and concerns of the public regarding the use of linked data for research will help develop data access regulations that reflect wide public interests.

What Kind of Brexit do Voters want? Lessons from the Citizens’ Assembly on Brexit

AbstractThe Citizens’ Assembly on Brexit was a major exercise in deliberative public engagement conducted in autumn 2017. It brought together fifty randomly selected members of the public for two carefully structured weekends of listening, learning, reflecting and discussing. Assembly members considered what post‐Brexit arrangements the UK should pursue, focusing on trade and migration. On trade, most members wanted the UK to pursue a bespoke arrangement with the EU and rejected the option of leaving the EU with no deal. On migration, most wanted the UK to maintain free movement of labour while using already available policy levers to reduce immigration numbers. These findings provide unique insight into informed public opinion on vital, pressing policy questions. The Assembly also illustrates the valuable role that such deliberative exercises could play in UK democracy. We suggest they could be particularly helpful for unlocking progress on issues such as the future of social care, that are often felt to be ‘too difficult’ to handle.

Trade-offs, fairness, and funding for cancer drugs: key findings from a deliberative public engagement event in British Columbia, Canada

BackgroundSpending on cancer drugs has risen dramatically in recent years compared to other areas of health care, due in part to higher prices associated with newly approved drugs and increased demand for these drugs. Addressing this situation requires making difficult trade-offs between cost, harms, and ability to benefit when using public resources, making it important for policy makers to have input from many people affected by the issue, including citizens.MethodsIn September 2014, a deliberative public engagement event was conducted in Vancouver, British Columbia (BC), on the topic of priority setting and costly cancer drugs. The aim of the study was to gain citizens’ input on the topic and have them generate recommendations that could inform cancer drug funding decisions in BC. A market research company was engaged to recruit members of the BC general public to deliberate over two weekends (four days) on how best to allocate resources for expensive cancer treatments. Participants were stratified based on the 2006 census data for BC. Participants were asked to discuss disinvestment, intravenous versus oral chemotherapy delivery, and decision governance. All sessions were audio recorded and transcribed. Transcripts were analyzed using NVivo 11 software.ResultsTwenty-four individuals participated in the event and generated 30 recommendations. Participants accepted the principle of resource scarcity and the need of governments to make difficult trade-offs when allocating health-care resources. They supported the view that cost-benefit thresholds must be set for high-cost drugs. They also expected reasonable health benefits in return for large expenditures, and supported the view that some drugs do not merit funding. Participants also wanted drug funding decisions to be made in a non-partisan and transparent way.ConclusionThe recommendations from the Vancouver deliberation can provide guidance to policy makers in BC and may be useful in challenging pricing by pharmaceutical companies.

Prompting Deliberation about Nanotechnology: Information, Instruction, and Discussion Effects on Individual Engagement and Knowledge

Deliberative (and educational) theories typically predict knowledge gains will be enhanced by information structure and discussion. In two studies, we experimentally manipulated key features of deliberative public engagement (information, instructions, and discussion) and measured impacts on cognitive-affective engagement and knowledge about nanotechnology. We also examined the direct and moderating impacts of individual differences in need for cognition and gender. Findings indicated little impact of information (organized by topic or by pro-con relevance). Instructions (prompts to think critically) decreased engagement in Study 1, and increased it in Study 2, but did not impact post-knowledge. Group discussion had strong positive benefits for self-reported cognitive-affective engagement across studies. Also, for some types of engagement, effects were more positive for women than men. When predicting knowledge, there also was some evidence that discussion was more positive for women than men. Finally, need for cognition positively predicted engagement and knowledge gains, but rarely moderated the experimental effects. Given these mixed results, future research should continue to test theoretical assumptions about the effects of specific deliberative design features.

Public conceptions of justice in climate engineering: Evidence from secondary analysis of public deliberation

Secondary analysis of transcripts of public dialogues on climate engineering indicates that justice concerns are an important but as yet under-recognised dimension influencing public reactions to these emerging techniques. This paper describes and explores justice issues raised by participants in a series of deliberative public engagement meetings. Such justice issues included the distribution of costs and benefits across space and time; the relative power and influence of beneficiaries and others; and the weakness of procedural justice measures that might protect public interests in decision making about climate engineering. We argue that publics are mobilising diverse concepts of justice, echoing both philosophical and practical sources. We conclude that a better understanding of conceptions of justice in this context could assist exploration and understanding of public perceptions of and attitudes towards climate engineering and the different technologies involved. Such detailed public engagement would appear essential if sound, well-informed and morally justifiable decisions are to be made regarding research or development of climate engineering.

P.409 - MRC biobank Newcastle – A five-year review of the John Walton Muscular Dystrophy Research Centre experience

As acknowledged in the literature, public consultation related to biobanks has been largely oriented to assuring and informing rather than seeking considered input. In April and May of 2007, the authors participated in running a deliberative public engagement event in British Columbia, Canada, which sought to enhance public input related to the governance of biobanks. The topic of the event was ‘Biobanking in British Columbia (BC)’ and at the event a random-digit dialed demographically stratified sample of 21 participants deliberated on what values and interests ought to be considered in the regulation and use of biobanks for health research. In this paper, we report results related to debate over the place of informed consent in biobank research. Drawing on a pre/post-survey and qualitative analysis of event transcripts, we show that participants indicated strong support for biobanks, for a general reduction in concern for withdrawal of samples, and placed a strong emphasis on the need for review of biobanks research that is independent of funders and researchers. In this context, there was persistent disagreement about when consent was required for new research activities.