Citizen Juries Research Articles

Public Attitudes Towards Access to Health Data for Research Purposes Through Citizens' Jury in Uganda.

Citizens juries (CJ) are a method of deliberative action research that have been utilized in countries with well-funded health care systems to address questions about access to health data. Uganda is classified as a low-income country and utilizes a predominantly paper-based health record system. The burgeoning electronic health record in the central area represents an opportunity to collect and analyze longitudinal data on patients living with long term HIV infection and multiple diseases, a hitherto unexplored disease mapping exercise We set out to understand the public perception towards the use of data for research purposes such as this among Ugandans utilizing an adapted strategy sensitive to the local culture. The jury were unanimous that electronic data should be used for research provided certain safeguards are adhered to and most importantly, that consent to do so is obtained on the basis of a clear rationale for the project.

IMPAACT: IMproving the PArticipAtion of older people in policy decision-making on common health CondiTions – a study protocol

IntroductionRapid population ageing is a demographic trend being experienced and documented worldwide. While increased health screening and assessment may help mitigate the burden of illness in older people, issues such...

Transformative power production futures: citizen jury deliberations in Saskatchewan, Canada

BackgroundTransforming power production systems to achieve net zero emissions and address climate change will require deep structural changes, partially dependent on community perceptions of the necessary energy transition. The article presents results from 2-day citizen juries held in four communities of Saskatchewan, Canada: Estevan, Swift Current, Regina, and Saskatoon in 2021/22 whose purpose was to determine if place attachment impacts future power production preferences and whether social learning can be achieved. Mixed research methods included a survey before and after the citizen juries and a qualitative analysis of the discussions and outputs.ResultsResearch results confirm that while there are common concerns across communities about unbiased information, transparent decision-making, justice/equity concerns, and people's involvement, community-imagined energy futures can be very divergent. Not only place-based attachment, the existent industry and infrastructure surrounding the community impact preferences but also openness to learning and group dynamics contribute. Focused deliberations on the complex problem of climate change advance social learning.The coal, oil, and gas community of Estevan supported coal, natural gas, and carbon capture and sequestration (CCS) to a substantially larger extent than other communities, even increasing their preference for coal after the citizen jury. Saskatoon chose Small Modular Reactors (SMR) as their top choice, whereas Swift Current switched from preferring natural gas to solar and SMRs.ConclusionsThe findings from the jury sessions suggest changing attitudes toward SMRs as a potential source of energy, as well as a shift from cost considerations to environmental. Future research implications could include differing methodologies and potentially partnering beyond academia. Jurors all expressed the desire for greater government leadership, urging the government to demonstrate accountability, hold large enterprises accountable, and be more proactive in bringing parties together.

Impact of information and deliberation on the consistency of preferences for prioritization in health care – evidence from discrete choice experiments undertaken alongside citizens’ juries

BackgroundPublic preferences are an important consideration for priority-setting. Critics suggest preferences of the public who are potentially naïve to the issue under consideration may lead to sub-optimal decisions. We assessed the impact of information and deliberation via a Citizens’ Jury (CJ) or preference elicitation methods (Discrete Choice Experiment, DCE) on preferences for prioritizing access to bariatric surgery.MethodsPreferences for seven prioritization criteria (e.g. obesity level, obesity-related comorbidities) were elicited from three groups who completed a DCE: (i) participants from two CJs (n = 28); (ii) controls who did not participate in the jury (n = 21); (iii) population sample (n = 1,994). Participants in the jury and control groups completed the DCE pre- and post-jury. DCE data were analyzed using multinomial logit models to derive “priority weights” for criteria for access to surgery. The rank order of criteria was compared across groups, time points and CJ recommendations.ResultsThe extent to which the criteria were considered important were broadly consistent across groups and were similar to jury recommendations but with variation in the rank order. Preferences of jurors but not controls were more differentiated (that is, criteria were assigned a greater range of priority weights) after than before the jury. Juror preferences pre-jury were similar to that of the public but appeared to change during the course of the jury with greater priority given to a person with comorbidity. Conversely, controls appeared to give a lower priority to those with comorbidity and higher priority to treating very severe obesity after than before the jury.ConclusionBeing informed and undertaking deliberation had little impact on the criteria that were considered to be relevant for prioritizing access to bariatric surgery but may have a small impact on the relative importance of criteria. CJs may clarify underlying rationale but may not provide substantially different prioritization recommendations compared to a DCE.

Involvement in data initiatives

Summer 2021. #NhsDataGrab is trending on Twitter and over a million people opt out of NHS data-sharing in one month in a backlash against a government plan: General Practice Data for Planning and Research. The scheme proposes that GP anonymised health data for everyone in England will be made available to researchers and companies for healthcare research and planning. The plan is now on hold, much to the dismay of data scientists who believe that data saves lives.
 It has been suggested that greater public participation around the sharing of health data will help to alleviate public concerns, and may prevent more members of the public opting out. Health data initiatives have involved members of the public in different ways, from “citizen juries” to public panels and advisory boards.
 Using ethnographically-informed qualitative case studies, this project takes a closer look at involvement approaches in different data sharing initiatives. The case studies include: citizen juries that asked jurors to consider different real-world data initiatives; a public panel set up by a regional databank that carries out data linking; and an advisory board of members of the public at a national data institution. I have carried out observations of the involvement activities, and conducted semi-structured 1:1 interviews with those who organise and have taken part in the activities.
 I have recently completed data collection, with analysis ongoing. The analysis is thematic and primarily inductive, using principles of grounded theory and drawing on Silverman’s constant comparative method. Key themes, patterns, and variations are currently being noted and developed. Current areas of interest include: epistemic or democratic reasoning for activities; the roles that the different actors play in participation and how contributors are changed by their involvement.

The Tunisian experience of participatory health governance: the Societal Dialogue for Health (a qualitative study)

BackgroundTunisia has been engaged in the Societal Dialogue (SD) for Health process since 2012, a participatory health governance process aimed at bringing in people’s voice into health policy-making. Its first success was the recently released National Health Policy 2030. This paper aims to document the SD process and to bring out the lessons learned to inspire other countries.MethodsThis study was based essentially on a qualitative analysis of semi-structured interviews with citizen jury members and health experts that took place from May to September 2018. The qualitative analysis adopted an inductive-deductive approach according to a cross-matrix between the themes of the interview of the two groups of interviewees.ResultsThe qualitative analysis of the data highlighted that the Societal Dialogue created a health democracy dynamic with inclusive dialogue spaces for the population, communities, and civil society to participate in health system design. It constituted a multi-actor and multidisciplinary coordination platform to increase consensus building among actors. Initial government support and high levels of volunteer commitment allowed the process to achieve a certain level of sustainability. However, this process faced and still faces many challenges such as overreliance on volunteers; a crisis of trust; political instability and the lack of an effective communication strategy. These challenges negatively influence the policy uptake of recommendations made by the Societal Dialogue for Health.ConclusionThe Tunisian societal dialogue experience highlights both the successes and challenges of a structured participatory platform, as well as the effort and perseverance it takes to keep such a process functional and relevant. A key lesson from this study is that this model of participatory health governance eventually reaches a stage where population, community, and civil society participation needs to be more institutionalized within the government routine so that it can credibly feed into health policy review processes and inform decision-makers on a regular basis.

Ethical Issues of Artificial Intelligence in Diabetes Mellitus

Artificial intelligence (AI) has permeated various branches of clinical medicine, with promising applications in predictive, diagnostic and therapeutic areas. Digital innovations are increasingly useful in the management of non communicable diseases in the form of tracking applications, data collection systems (EMRs) and wearable sensors. Globally, diabetes mellitus is the most common and serious non communicable disease. There is a mismatch between the people with diabetes and the number of healthcare professionals needed to manage them. Therefore, artificial intelligence has the potential to play a significant role in addressing the unmet need. Majority of AI applications have been developed for the diabetes population. Ethical issues arising from the application can be carried over to its application in other areas of clinical medicine. Among diabetic population, artificial intelligence has been prominently employed in screening for diabetic retinopathy. Continuous glucose monitoring and insulin pumps are other areas of application. Data collection and sharing through AI media can ease the burden of poor doctor-patient ratio, and improve efficacy of treatment. Despite its advantages, and the fact that citizen juries have been found to be favourable towards the use of AI in research and treatment, certain drawbacks continue to exist. With the threat of data theft and breach of privacy, due diligence must be given to ethical and legal aspects to protect the patient. It is acknowledged that AI can facilitate the decision making process but not entirely replace a physician's role. With able governing laws, systems to protect safety, minimize bias and improve transparency, AI and precision medicine could help control the burden of disease.

Quantifying public preferences for healthcare priorities in Taiwan through an integrated citizens jury and discrete choice experiment

Priority setting is a critical process for national healthcare systems that need to allocate limited resources across unlimited healthcare demands. In recent decades, health policymakers have identified the need to combine technical dimensions of priority setting with political dimensions relating to community values. A range of methods for engaging the public in priority setting has been developed, yet there is no consensus around the most effective methodology. A 2014 paper proposed the integration of two methods currently used for soliciting public preferences around health care services: i) an individual survey instrument, Discrete Choice Experiments (DCEs) and ii) Citizen Juries (CJs), a group-based model that incorporates education and deliberative dialogue. This pilot study is among the first to empirically test this integrated method to assess its value across two domains: does the CJ process alter participant preferences and are the consensus values of the CJ captured by the individualistic DCE? The two-part, mixed methods study was administered in Taipei, Taiwan in August of 2016. Twenty-seven participants completed a DCE as a baseline pre-test, ranking a set of attributes in terms of importance for future resource allocation under Taiwan's National Health Insurance System. Twenty of the participants next took part in the integrated CJ-DCE method, which consisted of education and facilitated dialogue through a CJ, followed by retaking the DCE survey. Participant preferences changed after undergoing the CJ process and these new, group-based preferences were reflected in the second DCE, meaning participants did not revert to their original individualistic preferences. The results of this study demonstrate that the integrated CJ-DCE method adds value in allowing an ethically communitarian set of values to be developed and captured via an individualistic methodology. Further testing is needed to investigate the reliability of our findings and how it may be implemented to maximize public acceptance.

Public involvement in big data projects: an ethnographically-informed study.

ObjectivesPublic involvement and engagement (PIE) is playing an increasingly important role in big data initiatives and projects. It is therefore important to gain a deeper understanding of the different approaches used. ApproachThis study explores PIE using ethnographically-informed qualitative case studies. The case studies include: three citizen juries, each one carried out over eight days and that asked jurors to consider different real-world health data initiatives; and a public panel set up by a regional databank that carries out data linking. Data collection is ongoing and I will be continuing to carry out close observations of activities, and conducting semi-structured 1:1 interviews with those that organise and have taken part in the activities. ResultsData collection so far comprises completed observations at the citizen juries (~96 hours), ongoing observations of the public panel meetings (~15 hours), and thirty semi-structured 1:1 interviews with public contributors and other stakeholders about their experiences of the activities they were involved in. Early data analysis indicates key themes of: jurors feeling heard, but unsure whether anybody was listening; stakeholders being impressed by informed jurors, but raising concerns over contributors becoming too ‘expert’; how who is at the table and what information is presented impacts what is discussed; differences between online and in-person participation; and public involvement not being a substitute for informing the public about how their data is used. Conclusion‘Who’ is involved, and ‘how’ PPIE activities are designed and run can facilitate or constrain discussion, enhancing or limiting public contributions. If public involvement is to achieve its aims, including increasing trustworthiness, deeper consideration of these factors by those who seek the public’s views in their data projects is recommended.

Engage, understand, listen and act: evaluation of Community Panels to privilege First Nations voices in pandemic planning and response in Australia

IntroductionFirst Nations Peoples of Australia have not been included in the development nor prioritised in pre-2009 pandemic plans despite being a priority population in Australian health policy. Marginalised groups experience...

Integrating Citizens Juries and Discrete Choice Experiments: Methodological issues in the measurement of public values in healthcare priority setting

All health systems struggle with unlimited needs for healthcare, yet limited resources with which to address them. Under national health insurance systems, policymakers must make explicit and potentially contested decisions around resource allocation. Policymakers have recognized the need to include public values in decisions regarding the distribution of resources across competing health priorities. Given the complex nature of these decisions, however, research into how to effectively measure public preferences is underdeveloped. Measuring community values poses special challenges since they involve normative judgments that can be interpreted differently across individuals and communities. Researchers have previously proposed integrating two methods that are currently used for measuring public preferences around healthcare services: i) an individual survey instrument, the Discrete Choice Experiment (DCE) and ii) a group-based model that incorporates informed opinions and deliberative dialogue, Citizen Juries (CJs). This current paper proposes a framework for implementing that integration and assesses methodological issues in the integration of DCEs and CJs, including issues of generalizability and validity. CJs and DCEs have conflicting epistemological and methodological foundations, which impact how researchers might analyze results of the integrated method. Researchers and policymakers interested in measuring social values should determine the philosophical orientation of their research question prior to study design, which will assist in choosing an appropriate research method. Further research is needed to investigate the empirical validity of the integrated method and how it may be implemented to maximize public acceptance. Advancing these methods can provide an improved instrument for capturing public preferences for policymakers tasked with priority setting in diverse contexts.

Exploring the Role of Public Policy in Adapting to the Challenges and Opportunities of Emerging Technologies

This research paper investigates how government policy can be modified to meet the opportunities and threats posed by rapidly developing technologies. This article focuses on Examine how emerging technologies are affecting our democracy, personal lives, economy, and culture. New technology potential benefits and drawbacks are compared, and policy shortcomings and roadblocks are identified. The thesis also examines policy options for regulating emerging technologies like blockchain, cryptocurrencies, and the Internet of Things. The effectiveness and viability of various policy methods are reviewed, and the significance of public participation in technological policy-making is emphasized. The use of digital technologies, citizen juries, collaborative policy-making, education and awareness-raising campaigns, consultations, public hearings, and citizen juries are a few of the methods proposed to promote public participation and engagement in technological policy-making processes. The entire thesis emphasizes the value of proactive and transparent government with reference to technology improvements. Governments may better ensure that new technologies are used in ways that are beneficial for society, the economy, the environment, and everyone's rights and freedoms by allowing citizens to provide input on policy decision.

TOWARDS CIVIC PARTICIPATION IN THE DATAFIED SOCIETY: CAN CITIZEN ASSEMBLIES DEMOCRATIZE ALGORITHMIC GOVERNANCE?

Citizens are increasingly assessed, profiled, categorized and scored according to data analytics, their future behavior is predicted, and services are allocated accordingly. State-citizen relations become quasi-automated and dependent on algorithmic decision-making, yet (largely) without people’s knowledge and without avenues to meaningfully engage and intervene. This raises significant challenges for democratic processes and active citizenship. How do we participate as citizens in a society in which we are constantly rated and categorized in ways that we do not understand? How do we affect the development and management of the very data systems that increasingly organize society? How do we develop new democratic practices to ensure participation and accountability? This paper explores emerging opportunities for participatory and deliberative forms of governing the implementation of data analytics, particularly in the public sector. It investigates how models of engagement and deliberation – from citizen juries and citizen assemblies to deliberative polls and public dialogues – can advance civic participation in the roll-out and implementation of data analytics and thus democratize algorithmic governance. It assesses the suitability of these practices by evaluating, e.g., the level of participation, policy impcts, and institutional challenges and obstacles, bringing together insights from the fields of critical data studies and democratic innovation. The paper draws on findings from 15 expert interviews conducted between 2019 and 2021 with members of government and civil society as well as a fact-finding workshop that form part of a two-year project investigating the practices, structures and constraints of citizen engagement with datafied governance.

Are citizen juries and assemblies on climate change driving democratic climate policymaking? An exploration of two case studies in the UK

In light of increasing pressure to deliver climate action targets and the growing role of citizens in raising the importance of the issue, deliberative democratic processes (e.g. citizen juries and citizen assemblies) on climate change are increasingly being used to provide a voice to citizens in climate change decision-making. Through a comparative case study of two processes that ran in the UK in 2019 (the Leeds Climate Change Citizens’ Jury and the Oxford Citizens’ Assembly on Climate Change), this paper investigates how far citizen assemblies and juries are increasing citizen engagement on climate change and creating more citizen-centred climate policymaking. Interviews were conducted with policymakers, councillors, professional facilitators and others involved in running these processes to assess motivations for conducting these, their structure and the impact and influence they had. The findings suggest the impact of these processes is not uniform: they have an indirect impact on policy making by creating momentum around climate action and supporting the introduction of pre-planned or pre-existing policies rather than a direct impact by truly being citizen-centred policy making processes or conducive to new climate policy. We conclude with reflections on how these processes give elected representatives a public mandate on climate change, that they help to identify more nuanced and in-depth public opinions in a fair and informed way, yet it can be challenging to embed citizen juries and assemblies in wider democratic processes.

"The need for a Citizen Jury Model: Partnering with the Public for Governance of Artificial Intelligent Solutions for Integrated HealthCare "

The International Journal of Integrated Care (IJIC) is an online, open-access, peer-reviewed scientific journal that publishes original articles in the field of integrated care on a continuous basis.IJIC has an Impact Factor of 5.120 (2020 JCR, received in June 2021)

Public perspectives on acquired brain injury rehabilitation and components of care: A Citizens' Jury.

BackgroundBrain injury rehabilitation is an expensive and long‐term endeavour. Very little published information or debate has underpinned policy for service delivery in Australia. Within the context of finite health budgets and the challenges associated with providing optimal care to persons with brain injuries, members of the public were asked ‘What considerations are important to include in a model of care of brain injury rehabilitation?’MethodsQualitative study using the Citizen Jury method of participatory research. Twelve adult jurors from the community and seven witnesses participated including a health services funding model expert, peak body representative with lived experience of brain injury, carer of a person with a brain injury, and brain injury rehabilitation specialists. Witnesses were cross‐examined by jurors over two days.ResultsKey themes related to the need for a model of rehabilitation to: be consumer‐focused and supporting the retention of hope; be long‐term; provide equitable access to services irrespective of funding source; be inclusive of family; provide advocacy; raise public awareness; and be delivered by experts in a suitable environment. A set of eight recommendations were made.ConclusionInstigating the recommendations made requires careful consideration of the need for new models of care with flexible services; family involvement; recruitment and retention of highly skilled staff; and providing consumer‐focused services that prepare individuals and their carers for the long term.Patient and public contributionAs jury members, the public deliberated information provided by expert witnesses (including a person with a head injury) and wrote the key recommendations.

Legacy of COVID‐19 – the opportunity to enhance surgical services for patients with colorectal disease

The COVID-19 crisis has undoubtedly taken a toll on the care of patients with colorectal disease. Elective services, be that face to face contact, endoscopy or operating all but ceased during the pandemic.

The Tunisian societal dialogue for health reform (a qualitative study)

Abstract Background Tunisia is currently through its second phase of the Societal Dialogue for Health System Reform to develop a National Health Policy 2030. By contributing to the documentation of this process this work will allow the different partners to have an overview of its place in health planning as well as the success factors and the challenges of the model in relation to international norms and experiences. Methods This work was based on a qualitative analysis of semi-structured interviews with citizen juries and experts that took place from May 2018 to September 2018. The qualitative analysis was done according to a cross-matrix between the themes of the interview of the two groups of interviewees. The analysis of the data was mixed: a coding of the data collected was done beforehand. However this frame has been adjusted according to the transcriptions. Results The qualitative analysis of the data highlighted four axes: the context of initiation of the societal dialogue and the passage from the claim to the political instrumentalization, the citizen participation and the role of the various actors, the mixed perception of the societal dialogue and the crisis of trust, the methodology of the social dialogue process, especially the 'Citizen Jury' method. The main factors of success of the societal dialogue are the commitment of the actors, the political will, the inclusivity and the multidisciplinarity of the process and finally the communication around the process. The main challenges are the non-ownership of the process by the policies and the different stakeholders as well as the doubt about the achievement of these results. Conclusions It is important to introduce regular citizen and societal consultation so that it can credibly feed into policy review processes and inform policy makers on a regular basis. It would be important to think of a model for the sustainability of this approach. This involves finding the necessary financial and operational means. Key messages The promotion of citizen's participation in health is crucial in the new Tunisian democratic experience. A legal framework is needed to ensure the sustainability of the new approach of citizen's participation in health.

Different Processes, Different Outcomes? Assessing the Individual‐Level Impacts of Public Participation

AbstractThis article empirically investigates the relative efficacy of different direct participation processes. Specifically, it compares the effects of three types of participatory processes (public meetings, focus groups, and citizen juries) on participants' issue awareness, competence, empowerment, and trust in service professionals. The authors hypothesize that all three participatory processes will positively affect these individual outcomes but that the magnitudes of effects will differ across the three processes. Using data from field experiments, the authors test and find general support for the hypotheses. This study contributes to understanding of public participation, particularly in terms of the relationship between participatory design and outcomes.

Citizen Advisory Committees in the Contingent Valuation Method Process

AbstractThe contingent valuation method (CVM) is a tool of economic analysis the purpose of which is to measure, on the basis of individuals' stated preferences, the utility they attach to the production of public goods—thereby enabling a public decision maker to arbitrate between different items of expenditure. The approach has been deployed as part of a centralist conceptual scheme that leaves little room for citizens in the process and is now being challenged by the increasing prominence of multilevel governance, particularly in Europe. The objective of this article was to propose and discuss the use in this context of citizen advisory committees (CACs) rather than the other participatory tools sometimes recommended in contingent valuation studies, such as citizen juries and the scenario workshop. It also discusses certain limitations of the CAC/CVM combination to ensure that citizens' opinions could be better taken into account in the specification and implementation of public programs.Related ArticlesAdams, Brian E. 2016. “Assessing the Merits of Decentralization: A Framework for Identifying the Causal Mechanisms Influencing Policy Outcomes.” Politics & Policy 44 (5): 820‐849. https://doi.org/10.1111/polp.12172Bance, Philippe, and Angelique Chassy. 2017. “The Rollout of the Multilevel Governance System: A Source of Reworking the Contingent Valuation Method?” Politics & Policy 45 (6): 1080‐1107. https://doi.org/10.1111/polp.12236Kim, Myunghee. 2007. “Citizens' Confidence in Government, Parliament and Political Parties.” Politics & Policy 35 (3): 496‐521. https://doi.org/10.1111/j.1747-1346.2007.00070.x