Deliberative Sessions Research Articles

Public deliberation to assess patient views on biosimilar medication switching for the treatment of inflammatory bowel disease

BackgroundBiosimilars are highly similar, but not identical, versions of originator biologic medications. Switching patients to biosimilars presents an opportunity to mitigate rising drug costs and expand patient access to important biologic therapies. However, decreased patient acceptance and adherence to biosimilar medications have been reported, which can lead to loss of treatment response, adverse reactions, and inefficient resource utilization. Understanding patient perceptions of biosimilars and biosimilar switching is needed to inform patient-centered care strategies that promote efficient resource utilization.MethodsWe used democratic deliberation methods to solicit the informed and considered opinions of patients regarding biosimilar switching. Patients with inflammatory bowel disease (IBD; n = 29) from the Veterans Health Administration (VHA) participated in 5-hour deliberation sessions over two days. Following educational presentations with experts, participants engaged in facilitated small group discussions. Transcripts and facilitators’ notes were used to identify key themes. Participants completed surveys pre- and post-deliberation to collect sociodemographic and clinical features as well as to assess IBD treatment knowledge and attitudes toward care and approaches to biosimilar switching.ResultsFive major themes emerged from the small group discussions in the context of biosimilar switching: 1) concerns about adverse consequences and unclear risk-benefit balance; (2) importance of communication and transparency; (3) desire for shared decision making and patient involvement in treatment decisions; (4) balancing cost-saving with competing priorities; and (5) advocating for individualized care and prioritization based on risk levels. These views led participants to favor approaches that prioritize switching the sickest patients last (i.e., those with poorly controlled disease) and that offer patients control and choices around biosimilar switching. Participants also expressed preferences for combining elements of different approaches to maximize fairness.ConclusionsApproaches to biosimilar switching should consider patients’ desires for transparency and effective communication about biosimilar switching and engagement in their medical decision-making as part of patient-centered care. Incorporating patient preferences around biosimilar switching is critical when navigating the quality and affordability of care in resource constrained settings, both within the VHA and in other healthcare systems.

What are the views of Quebec and Ontario citizens on the tiebreaker criteria for prioritizing access to adult critical care in the extreme context of a COVID-19 pandemic?

BackgroundThe prioritization protocols for accessing adult critical care in the extreme pandemic context contain tiebreaker criteria to facilitate decision-making in the allocation of resources between patients with a similar survival prognosis. Besides being controversial, little is known about the public acceptability of these tiebreakers. In order to better understand the public opinion, Quebec and Ontario’s protocols were presented to the public in a democratic deliberation during the summer of 2022.Objectives(1) To explore the perspectives of Quebec and Ontario citizens regarding tiebreakers, identifying the most acceptable ones and their underlying values. (2) To analyze these results considering other public consultations held during the pandemic on these criteria.MethodsThis was an exploratory qualitative study. The design involved an online democratic deliberation that took place over two days, simultaneously in Quebec and Ontario. Public participants were selected from a community sample which excluded healthcare workers. Participants were first presented the essential components of prioritization protocols and their related issues (training session day 1). They subsequently deliberated on the acceptability of these criteria (deliberation session day 2). The deliberation was then subject to thematic analysis.ResultsA total of 47 participants from the provinces of Quebec (n = 20) and Ontario (n = 27) took part in the online deliberation. A diverse audience participated excluding members of the healthcare workforce. Four themes were identified: (1) Priority to young patients - the life cycle - a preferred tiebreaker; (2) Randomization - a tiebreaker of last resort; (3) Multiplier effect of most exposed healthcare workers - a median acceptability tiebreaker, and (4) Social value – a less acceptable tiebreaker.ConclusionLife cycle was the preferred tiebreaker as this criterion respects intergenerational equity, which was considered relevant when allocating scarce resources to adult patients in a context of extreme pandemic. Priority to young patients is in line with other consultations conducted around the world. Additional studies are needed to further investigate the public acceptability of tiebreaker criteria.

Let’s (not) talk about race: comparing mock jurors’ verdicts and deliberation content in a case of lethal police use of force with a White or Indigenous victim

ABSTRACT Several lethal police use of force (UoF) encounters have recently occurred across North America, sparking public debate about officer accountability. This project investigated what jurors discuss during deliberations in simulated trials involving UoF and evaluated whether the race of the victim affects individual verdicts and deliberation content. Canadian jury-eligible participants (N = 78) watched and listened to a fictional trial involving a police officer charged with manslaughter with a White or Indigenous victim. After rendering individual pre-deliberation verdicts, mock jurors took part in a 60-minute deliberation session, then rendered individual post-deliberation verdicts. Although victim race did not have a statistically significant effect on pre-deliberation verdicts, the odds of jurors rendering a guilty post-deliberation verdict was nearly 10 times higher when the victim was White as opposed to Indigenous. Deliberation analyses indicated that jurors were significantly more likely to provide ‘anti-defendant’ and ‘pro-prosecution’ utterances when the victim was White as compared to Indigenous. However, jurors very rarely directly discussed race in deliberations. Additionally, jurors with negative perceptions of police were significantly more likely to utter ‘anti-defendant’ statements. Overall, this study suggests that, contrary to the assumption of the Canadian legal system, victim race influences legal decision-making in trials involving officer UoF.

Assessing Facilitator Fidelity to Principles of Public Deliberation: Tutorial.

Public deliberation, or deliberative democracy, is a method used to elicit informed perspectives and justifiable solutions to ethically fraught or contentious issues that affect multiple stakeholder groups with conflicting interests. Deliberative events bring together stakeholders (deliberants) who are provided with empirical evidence on the central issue or concern and then asked to discuss the evidence, consider the issue from a societal perspective, and collectively work toward a justifiable resolution. There is increasing interest in this method, which warrants clear guidance for evaluating the quality of its use in research. Most of the existing literature on measuring deliberation quality emphasizes the quality of deliberants' inputs (eg, engagement and evidence of compromise) during deliberative sessions. Fewer researchers have framed quality in terms of facilitator inputs, and these researchers tend to examine inputs that are consistent with generic group processes. The theory, process, and purpose of public deliberation, however, are distinct from those of focus groups or other group-based discussions and warrant a mechanism for measuring quality in terms of facilitator fidelity to the principles and processes of deliberative democracy. In our public deliberation on ethical conflicts in minor consent for biomedical HIV prevention research, we assessed facilitator fidelity to these principles and processes because we believe that such assessments serve as a component of a comprehensive evaluation of overall deliberation quality. We examined verbatim facilitator remarks in the deliberation transcripts and determined whether they aligned with the 6 principles of public deliberation: equal participation, respect for the opinions of others, adoption of a societal perspective, reasoned justification of ideas, expression of diverse opinions, and compromise or movement toward consensus. In this tutorial, we describe the development of a blueprint to guide researchers in assessing facilitator fidelity, share 3 templates that will assist them in the task, and describe the results of our assessment of facilitator fidelity in 1 of the 4 sites in which we conducted deliberations.

The "Birth-Centered Outcomes Research Engagement (B-CORE) in Medi-Cal" Project: Community-Generated Recommendations to Decrease Maternal Mortality and Severe Maternal Morbidity.

Through applied research and health care quality improvement, California has achieved a maternal mortality (MM) rate significantly lower than that measured nationally. However, Medicaid (Medi-Cal)-insured births in the state continue to experience disproportionate shares of MM and severe maternal morbidity (SMM), which often precedes death. Failure to engage the Medi-Cal community in this work may impede efforts to increase equity. This community engagement project used deliberative democracy methods to engage stakeholders with lived experience in California's Medi-Cal perinatal care system to generate an actionable and specific agenda of recommendations to decrease MM and SMM in the Medi-Cal population. A total of 37 Medi-Cal stakeholders-representing birthing people, providers, health plan administrators, and advocates-participated in longitudinal co-learning sessions on the topics of MM/SMM in Medi-Cal. Most of these stakeholders (75.7%) then participated in deliberation sessions. Deliberation recommendations fell into five distinct categories: Medi-Cal perinatal covered benefits, data collection and dissemination, patient experience and its link to care quality, Medi-Cal reimbursement rates, and accountability with respect to racism in perinatal care. Stakeholders identified the Medi-Cal system actors best positioned to implement specific recommendations to directly impact MM/SMM. This project demonstrates the feasibility and success of using deliberative democracy methods to generate local and community-generated solutions to critical problems in health equity. Active and engaged stakeholders were keen to identify both immediate actions and long-term research and quality improvement paradigm shifts to support birth equity in Medi-Cal.

Narratives on cutting down trees on private land. A comparison of urban and rural municipalities in Poland using the Q-deliberation method

Increased development in rural and urban areas leads to a decrease in tree cover and reduces the ecosystem services that trees provide. Municipal authorities must consider managing trees on private land to ensure that residents have access to trees and green spaces. In doing so, they must frequently confront conflicting stakeholder views, which are driven by diverse public and private interests and impacted by the type of landscape in question. In this paper, we investigate stakeholders’ views on tree removing on privately owned land, as represented by narratives about tree management in urban and rural municipalities, to assess whether a deliberation process can alter these views. We rely on the theory of wicked problems and apply two measurements by Q-method in two municipalities in Poland (N = 38 in both cases), with an intervening deliberation session between each measurement. The results reveal that, before the deliberation, narratives were divided mainly around the issue of where the right to decide about tree removing should reside. This division was visible in both municipalities, but was particularly pronounced in the rural one. The division was sharp and straightforward, and was linked with deeply shared values. After the deliberation, the narratives shifted and a new division emerged around the issue of how to organize the decision-making process and decision-making criteria. Moreover, after deliberation, the narratives of participants from both municipalities coalesced to a much greater extent than previously. The results prove that, although wicked problems do not have unambiguous solutions, deliberation processes can influence views and are instrumental in facilitating better informed tree management.

Designing research strategy and technology innovation for sustainability by adopting “imaginary future generations”—A case study using metallurgy

AbstractTo mobilize science and technology for sustainability, it is essential to develop a method for explicitly considering the needs and preferences of future generations in designing research strategies and technology innovations. In this study, we conducted a participatory deliberation experiment on research strategy design of hydrothermal reactions and slag, to analyze whether the adoption of imaginary future generations (IFGs), which is a social system that has been proven to be effective for overcoming shortsightedness and activating futurability of people and society in pursuit of sustainability, could change the direction of research and development (R&D) and thereby innovation. A questionnaire survey was administered to the participants after each deliberation session to verify whether treatments, such as analyzing past R&D initiatives and adopting IFGs in deliberations, would change participants’ perceptions about criteria related to designing R&D programs. The results of the deliberation experiment showed that the contents and ideas of research strategies, such as research visions, methodologies and anticipated benefits, were changed by the adoption of IFGs. The criteria used for designing R&D also altered according to changes in research strategy. The findings showed that adopting IFGs and examining issues from the viewpoint of “futurability” could shift the direction of research agendas and technological innovation. Furthermore, the findings could provide insights into how to design R&D strategies and generate innovations in pursuit of sustainability by reflecting upon the needs of and benefits to future generations.

Moral distress reduction using moral case deliberation in Japan: A mixed-methods study.

This study aims to develop and examine the effectiveness of a support program for reducing moral distress of nurses, based on the moral case deliberation methodology, and to study the feasibility of its implementation. Study design was an intervention study with pre/post-comparison. The support program included a short lecture and three moral case deliberation sessions for nurses working in an acute care hospital. The Measure of Moral Distress for Healthcare Professionals (MMD-HP) and the Euro-MCD (Moral Case Deliberation) 2.0 scale were used for pre/post-comparison, using the Wilcoxon's signed-rank test. Furthermore, post-intervention interviews were conducted with consenting participants to determine the reasons for changes in pre/post-intervention quantitative data. Of the 34 participants, 29 completed the post-questionnaire and were included in the quantitative data analysis, and 27 were included in the qualitative data analysis. The mean MMD-HP total scores increased from 147.5 ± 61.0 to 159.3 ± 66.7, but not significantly (p=.375). The mean score of moral competence, a sub-scale of the Euro-MCD 2.0, increased significantly from 15.4 ± 2.4 to 16.4 ± 2.8 after the intervention (p=.036). A qualitative analysis revealed increased moral sensitivity to ethically difficult situations and improved analytical skills as the reasons for change in scores pre/post-intervention. The results of the qualitative analysis suggested the effectiveness of the intervention. The moral distress score increased, although not significantly, and moral competence also increased, suggesting the participants' values changed after the intervention. It was found that the support program using MCD is expected to improve participants' moral competence.

Public Deliberation Process on Patient Perspectives on Health Information Sharing: Evaluative Descriptive Study.

BackgroundPrecision oncology is one of the fastest-developing domains of personalized medicine and is one of many data-intensive fields. Policy for health information sharing that is informed by patient perspectives can help organizations align practice with patient preferences and expectations, but many patients are largely unaware of the complexities of how and why clinical health information is shared.ObjectiveThis paper evaluates the process of public deliberation as an approach to understanding the values and preferences of current and former patients with cancer regarding the use and sharing of health information collected in the context of precision oncology.MethodsWe conducted public deliberations with patients who had a current or former cancer diagnosis. A total of 61 participants attended 1 of 2 deliberative sessions (session 1, n=28; session 2, n=33). Study team experts led two educational plenary sessions, and trained study team members then facilitated discussions with small groups of participants. Participants completed pre- and postdeliberation surveys measuring knowledge, attitudes, and beliefs about precision oncology and data sharing. Following informational sessions, participants discussed, ranked, and deliberated two policy-related scenarios in small groups and in a plenary session. In the analysis, we evaluate our process of developing the deliberative sessions, the knowledge gained by participants during the process, and the extent to which participants reasoned with complex information to identify policy preferences.ResultsThe deliberation process was rated highly by participants. Participants felt they were listened to by their group facilitator, that their opinions were respected by their group, and that the process that led to the group’s decision was fair. Participants demonstrated improved knowledge of health data sharing policies between pre- and postdeliberation surveys, especially regarding the roles of physicians and health departments in health information sharing. Qualitative analysis of reasoning revealed that participants recognized complexity, made compromises, and engaged with trade-offs, considering both individual and societal perspectives related to health data sharing.ConclusionsThe deliberative approach can be valuable for soliciting the input of informed patients on complex issues such as health information sharing policy. Participants in our two public deliberations demonstrated that giving patients information about a complex topic like health data sharing and the opportunity to reason with others and discuss the information can help garner important insights into policy preferences and concerns. Data on public preferences, along with the rationale for information sharing, can help inform policy-making processes. Increasing transparency and patient engagement is critical to ensuring that data-driven health care respects patient autonomy and honors patient values and expectations.

Moral Dilemmas of Dutch Prison Staff; a Thematic Overview from All Professional Disciplines

ABSTRACT Prison staff face situations with conflicting interests and values. To strengthen craftsmanship Dutch prison staff reflected upon personal moral dilemmas during Moral Case Deliberation (MCD) sessions. This research aims to gain systematic insight into themes and moral dilemmas Dutch prison staff encounter. Evaluation-forms of 171 MCD-sessions were collected (N = 1065 MCD-participants, N = 171 MCD-facilitators) from 22 teams of different professional disciplines at 3 locations. Our qualitative thematic content analysis included 154 moral dilemmas. We noted the organizational level and professional disciplines the moral dilemmas related to, and how dilemmas were formulated. All professional disciplines within prison work show to encounter a wide range of moral dilemmas, which emerge in and between all organizational levels. “Security” and “cooperation” were frequently mentioned themes, while dilemmas relating to the rehabilitation of prisoners were underrepresented. Some formulations of moral dilemmas were based on frustrations toward colleagues or the organization, expressed “powerlessness” to change practice, or contained normative arguments instead of an open formulation. These insights call for structural facilitation of methods for prison staff to deal with moral dilemmas. Ethics Support Services (ESS), such as MCD-sessions, can be used to further strengthen the moral craftsmanship of prison staff.

Foregrounding citizen imaginaries: Exploring just energy futures through a citizens' assembly in Lebanon

Energy injustice is driven by structural inequalities that are evident in differential electricity provision, access and affordability that harm different groups in different ways. When an uprising began in Lebanon in 2019, the issue of energy justice emerged as a prominent grievance. We experimented with a combined democratic-justice approach to energy future-making through a Citizens' Assembly (CA) on energy justice. We emerged with four imaginaries based on the discourses and narratives expounded on during the deliberation sessions of the CA. The citizens’ dystopic imaginary sits alongside a state-centric petro-masculine imaginary. The empirical findings from the CA demonstrate that to move society towards a just transition, the politics of energy can subsume sustainability and the 'ecological fix' imaginary. Justice principles require to add more urgent priorities like better access and affordability for all. The CA experiment demonstrates how critical political moments can make way for more radical and alternative visions of sustainable energy futures but also how competing imaginaries can complicate questions of sustainability when a justice approach is used.

Institutionalizing Non-institutionalization: Toward Sustainable Commoning

The goal of this article is to revive and empirically expand the debate on institutional frameworks within commons scholarship. The paper's guiding question is: what kind of institutional framework allows for sustainable commoning in urban conditions? In order to answer this question, we invoke the case of Savings and Credit Associations, a form of financial commoning whereby participants lend each other money and decide, through deliberative sessions, how the money is to be shared. We mobilize data from three decades of ethnographic research in India and The Netherlands, in order to distill the institutional properties that have contributed to Savings and Credit Associations' sustainable existence. The paper's main claim will be that in Savings and Credit Associations' institutional frameworks, a pivotal precondition for sustainable commoning can be found: the combination of a socio-relational (low-scale, trust-based) approach with a reconsideration of the rules at given intervals. In conclusion, we also argue that it's precisely a socio-relational approach which may save commoning's emancipatory potential.

Expanding upon the Promise of PCOR: The Patients Program Learning PCOR System Framework

Research ObjectiveMany PCOR studies apply principles aligned with the PCORI engagement rubric while planning, conducting, and disseminating research. Nonetheless, institutions may lack the capacity to incorporate emerging PCOR methods and results across their research infrastructure efficiently, which can limit opportunities for shared “learning” that occurs within an individual study across projects and PCOR teams.To address this gap, The PATIENTS Program at the University of Maryland, Baltimore developed a PCORI‐funded framework for a “Learning PCOR System”. A Learning PCOR System generates PCOR evidence, synthesizes PCOR evidence from the peer‐reviewed literature and other reliable sources, and prioritizes and interprets PCOR evidence for all stakeholders so that they remain actively engaged across the PCOR continuum ‐ not just when they are involved in an individual PCOR study.Study DesignPublic deliberation is an approach designed to elicit informed public views on complex issues. The four steps of public deliberation are: 1) Convene, 2) Learn, 3) Deliberate, and 4) Report. In collaboration with BCT Partners, The PATIENTS Program designed the four deliberative sessions for this project to mirror the 10‐Step Framework Continuous Patient Engagement in Comparative Effectiveness Research: 1) planning; 2) doing; 3) sharing; and 4) delivering results. The Stakeholder Advisory Board co‐developed a list of potential participants, stakeholders strategically positioned and willing to participate in co‐developing, conducting, translating, and/or disseminating PCOR to its stakeholder community. In response to the COVID‐19 pandemic, all four sessions were conducted virtually using the Zoom conference platform.The team conducted exit interviews with participants to evaluate each session's process and materials. Individual session results in the form of notes and an infographic were sent to participants for review and feedback. The proposed framework was developed based on the information collected from each of the deliberative sessions and exit interviews.Population StudiedSessions had representation from patients, healthcare providers, PCOR researchers, and other stakeholders, including patient advocates, community leaders, payers (insurers), and policymakers. All participants had participated in at least one PCOR study prior to the sessions.Principal FindingsThe iterative deliberative process model provided a scaffold to ensure stakeholder voices were included at every step of the Learning PCOR System framework, to facilitate The PATIENTS Program “learning while doing”.ConclusionsA Learning PCOR System built with the input from diverse stakeholders allows for PCOR practitioners to effectively and rapidly share results and PCOR methods across an institution and build connections across PCOR teams. It also provides a space for bi‐directional learning between community members, stakeholders, patient advisors, and researchers.Implications for Policy or PracticeA Learning PCOR System has the capacity for authentic shared learning across PCOR studies and incorporation of patient preferences, cultural and healthcare delivery context. Emerging evidence can be rapidly returned to patients and other stakeholders who could benefit from the information to increase engagement in PCOR research. In addition, other regions experiencing a lack of trust with patient communities could utilize the framework to improve their PCOR systems. Establishing trust with PCOR partners and recruitment populations builds bridges for open and enduring engagement.Primary Funding SourcePatient‐Centered Outcomes Research Institute.

Public Preferences in Resource Allocation for Insurance Coverage of Dental Implant Service in South Korea: Citizens' Jury.

The Korean government sought to include dental implant services for the elderly in the benefits package of the national health insurance. In 2014, the Citizens’ Jury was held to discuss the topic, during which thirty jurors, randomly selected from the 2665 applicants, participated in a day-long deliberation process after having an information session on the topic by a team of experts. There was a substantial shift in opinion during the deliberation session toward a more cost-conscious view. Most jurors supported limiting the coverage of dental implant to only one tooth per individual given the extent of the financial burden that will be imposed on the population. They opposed covering implant services for the front teeth, given that the implant of front teeth generally serves aesthetic purposes rather than restoring mastication function. The government’s final decision in 2014 was to offer coverage up to two teeth, regardless of tooth location. This scheme based on the jury’s recommendations in 2014 has been implemented without policy failure to date, which shows that the lay public can meaningfully contribute to a decision-making process regarding controversial agendas such as benefits packages for expensive health services.

Antimicrobial guidelines in clinical practice: incorporating the ethical perspective.

IntroductionGuidelines on antimicrobial therapy are subject to periodic revision to anticipate changes in the epidemiology of antimicrobial resistance and new scientific knowledge. Changing a policy to a broader spectrum has important consequences on both the individual patient level (e.g. effectiveness, toxicity) and population level (e.g. emerging resistance, costs). By combining both clinical data evaluation and an ethical analysis, we aim to propose a comprehensive framework to guide antibiotic policy dilemmas.MethodsA preliminary framework for decision-making on antimicrobial policy was constructed based on existing literature and panel discussions. Antibiotic policy themes were translated into specific elements that were fitted into this framework. The adapted framework was evaluated in two moral deliberation groups. The moral deliberation sessions were analysed using ATLAS.ti statistical software to categorize arguments and evaluate completeness of the final framework.ResultsThe final framework outlines the process of data evaluation, ethical deliberation and decision-making. The first phase is a factual data exploration. In the second phase, perspectives are weighed and the policy of moral preference is formulated. Judgments are made on three levels: the individual patient, the patient population and society. In the final phase, feasibility, implementation and re-evaluation are addressed.ConclusionsThe proposed framework facilitates decision-making on antibiotic policy by structuring existing data, identifying knowledge gaps, explicating ethical considerations and balancing interests of the individual and current and future generations.

Motivation for Carsharing Services: the Role of Sustainability Values

Sharing, collaborative consumption, and on-demand systems, provide various models of peer-to-peer exchanges of tangible and intangible assets. Sharing is believed to demonstrate the basic values of the sustainable development with focus on environmental, economic, and social issues. Carsharing services demonstrate high growth rate with personal safety requirements changing focus with COVID-19 pandemic. The behaviour of carsharing users is determined by several main motives: getting pleasure from and enjoying new technologies, realizing users’ views on reasonable consumption, strengthening one’s reputation among members of the community, and obtaining economic benefits. The article presents the results of carsharing motivation research. Online survey and deliberative research sessions revealed the importance of sustainable development values for the young active consumers.

Governance of a Learning Health Care System for Oncology: Patient Recommendations.

The learning health care system (LHS) was designed to enable real-time learning and research by harnessing data generated during patients' clinical encounters. This novel approach begets ethical questions regarding the oversight of users and uses of patient data. Understanding patients' perspectives is vitally important. We conducted democratic deliberation sessions focused on CancerLinQ, a real-world LHS. Experts presented educational content, and then small group discussions were held to elicit viewpoints. The deliberations centered around whether policies should permit or deny certain users and uses of secondary data. De-identified transcripts of the discussions were examined by using thematic analysis. Analysis identified two thematic clusters: expectations and concerns, which seemed to inform LHS governance recommendations. Participants expected to benefit from the LHS through the advancement of medical knowledge, which they hoped would improve treatments and the quality of their care. They were concerned that profit-driven users might manipulate the data in ways that could burden or exploit patients, hinder medical decisions, or compromise patient-provider communication. It was recommended that restricted access, user fees, and penalties should be imposed to prevent users, especially for-profit entities, from misusing data. Another suggestion was that patients should be notified of potential ethical issues and included on diverse, unbiased governing boards. If patients are to trust and support LHS endeavors, their concerns about for-profit users must be addressed. The ethical implementation of such systems should consist of patient representation on governing boards, transparency, and strict oversight of for-profit users.

Demographics and (Equal?) Voice: Assessing Participation in Online Deliberative Sessions

Critics of deliberative democracy have worried that deliberation may mirror (or even exacerbate) inequalities in participation across categories such as gender, race, and age. Accordingly, we investigate the potential for technology and design to ameliorate these concerns, looking at the extent to which online deliberative sessions facilitate inclusive participation. In a large study of online deliberation (over 1600 participants nested in hundreds of online sessions), we examine differences in the amount and nature of participation across demographic categories, as well as the effect of forum characteristics on such differences. Though our results are mixed, we read them with cautious optimism: the online format is not immune to inequalities in participation and satisfaction, but we do not observe differences across some demographics, and most observed differences are substantively minor. Moreover, features of online deliberation environments show promise for addressing some of the problems plaguing in-person designs.

Values of sustainable development as motives for sharing

The distributed use economy is using digital platforms and partially overlaps with sharing, collaborative consumption, and on-demand systems, providing various models of peer-to-peer exchanges of tangible and intangible assets. Distributed use and sharing are believed to demonstrate the triple bottom-line of the sustainable development with focus on environmental, economic and social issues. The behaviour of the distributed use economy users is determined by several main motives: getting pleasure from and enjoying new technologies, realizing users’ views on reasonable consumption, strengthening one’s reputation among members of the community, and obtaining economic benefits. The article presents the results of research of distributed use economy users and the relation of their motives to the values of sustainable development. Online survey and deliberative research sessions revealed the importance of sustainable development values for the young active consumers.

Effect of Public Deliberation on Patient Attitudes Regarding Consent and Data Use in a Learning Health Care System for Oncology

We sought to generate informed and considered opinions regarding acceptable secondary uses of deidentified health information and consent models for oncology learning health care systems. Day-long democratic deliberation sessions included 217 patients with cancer at four geographically and sociodemographically diverse sites. Patients completed three surveys (at baseline, immediately after deliberation, and 1-month follow-up). Participants were 67.3% female, 21.7% black, and 6.0% Hispanic. The most notable changes in perceptions after deliberation related to use of deidentified medical-record data by insurance companies. After discussion, 72.3% of participants felt comfortable if the purpose was to make sure patients receive recommended care (v 79.5% at baseline; P = .03); 24.9% felt comfortable if the purpose was to determine eligibility for coverage or reimbursement (v 50.9% at baseline; P < .001). The most notable change about secondary research use related to believing it was important that doctors ask patients at least once whether researchers can use deidentified medical-records data for future research. The proportion endorsing high importance decreased from baseline (82.2%) to 68.7% immediately after discussion (P < .001), and remained decreased at 73.1% (P = .01) at follow-up. At follow-up, non-Hispanic whites were more likely to consider it highly important to be able to conduct medical research with deidentified electronic health records (96.8% v 87.7%; P = .01) and less likely to consider it highly important for doctors to get a patient's permission each time deidentified medical record information is used for research (23.2% v 51.6%; P < .001). This research confirms that most patients wish to be asked before deidentified medical records are used for research. Policies designed to realize the potential benefits of learning health care systems can, and should be, grounded in informed and considered public opinion.