Citizens' Juries: When Older Adults Deliberate on the Benefits and Risks of Smart Health and Smart Homes.
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ABSTRACT:
SUBMITTER: Chadborn NH
PROVIDER: S-EPMC6627999 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundThere is good evidence of both community support for sharing public sector administrative health data in the public interest and concern about data security, misuse and loss of control over health information, particularly if private sector organizations are the data recipients. To date, there is little research describing the perspectives of informed community members on private sector use of public health data and, particularly, on the conditions under which that use might be justified.MethodsTwo citizens' juries were held in February 2020 in two locations close to Sydney, Australia. Jurors considered the charge: 'Under what circumstances is it permissible for governments to share health data with private industry for research and development?'ResultsAll jurors, bar one, in principle supported sharing government administrative health data with private industry for research and development. The support was conditional and the juries' recommendations specifying these conditions related closely to the concerns they identified in deliberation.ConclusionThe outcomes of the deliberative processes suggest that informed Australian citizens are willing to accept sharing their administrative health data, including with private industry, providing the intended purpose is clearly of public benefit, sharing occurs responsibly in a framework of accountability, and the data are securely held.Patient and public contributionThe design of the jury was guided by an Advisory Group including representatives from a health consumer organization. The jurors themselves were selected to be descriptively representative of their communities and with independent facilitation wrote the recommendations.
| S-EPMC8369100 | biostudies-literature
Project description:The prevalence of older patients with metastatic colorectal cancer (mCRC) will continue to increase with our aging population. Treatment of mCRC has changed significantly in the last few decades as we have learned how to personalize the treatment of mCRC to the biology of the tumor, utilizing new treatment approaches. With an ever-changing treatment paradigm, managing the population of older adults becomes paramount. This review highlights the pivotal clinical trials that defined the use of systemic therapy, immunotherapy and targeted therapies for mCRC, and how those are applied to the older patient population. In addition, we outline the tools for an in-depth assessment of an older adult in regards to treatment planning and management of therapy-related toxicities. A comprehensive geriatric assessment can assist in the selection of treatment for an older adult with mCRC. While frail older patients can frequently only tolerate single agents or modified regimens, fit older adults remain candidates for a wider range of treatment options. However, since all of these treatments are associated with possible toxicities, each patient's treatment must be personalized to the patient's goals and wishes through a shared decision-making process.
| S-EPMC9951235 | biostudies-literature
Project description:Background:Health technology assessment and ethical issues have to be dealt with in deciding on national carrier screening for cystic fibrosis (CF)-the most frequent severe autosomal recessive disease in Caucasian populations and several stakeholders need to be involved. A citizens' jury is one way to ask citizens to deliberate on controversial topics in the interests of a society. The aims of this project were to gather opinions about CF carrier screening through citizens' jury deliberations and to match them with the findings of a large online consultation survey open to the general population, people with CF and families and health professionals. Methods:Three citizens' juries and an online survey were asked: 'Should the Health Service organize screening of the population with the aim of identifying healthy people who may have children with CF?' The jurors had no medical background and no personal or family CF history. The survey was open to people with CF, families, and healthcare professionals. Results:Jurors and survey respondents were in favour of CF carrier screening, mainly considering the severity of CF, the value of informed reproductive choices and the equality of the screening. All the citizens' juries felt positively about the health service actively offer CF carrier screening to provide women and couples of reproductive age equal access and standardized information on the pros and cons. Conclusion:Considering the favourable attitude towards CF screening, the feasibility of CF screening, in terms of best setting, target age and healthcare professionals providing it, should be tested in a clinical trial.
| S-EPMC6148966 | biostudies-literature
Project description:BACKGROUND:Outbreaks of infectious disease cause serious and costly health and social problems. Two new technologies - pathogen whole genome sequencing (WGS) and Big Data analytics - promise to improve our capacity to detect and control outbreaks earlier, saving lives and resources. However, routinely using these technologies to capture more detailed and specific personal information could be perceived as intrusive and a threat to privacy. METHOD:Four community juries were convened in two demographically different Sydney municipalities and two regional cities in New South Wales, Australia (western Sydney, Wollongong, Tamworth, eastern Sydney) to elicit the views of well-informed community members on the acceptability and legitimacy of: making pathogen WGS and linked administrative data available for public health researchusing this information in concert with data linkage and machine learning to enhance communicable disease surveillance systems Fifty participants of diverse backgrounds, mixed genders and ages were recruited by random-digit-dialling and topic-blinded social-media advertising. Each jury was presented with balanced factual evidence supporting different expert perspectives on the potential benefits and costs of technologically enhanced public health research and communicable disease surveillance and given the opportunity to question experts. RESULTS:Almost all jurors supported data linkage and WGS on routinely collected patient isolates for the purposes of public health research, provided standard de-identification practices were applied. However, allowing this information to be operationalised as a syndromic surveillance system was highly contentious with three juries voting in favour, and one against by narrow margins. For those in favour, support depended on several conditions related to system oversight and security being met. Those against were concerned about loss of privacy and did not trust Australian governments to run secure and effective systems. CONCLUSIONS:Participants across all four events strongly supported the introduction of data linkage and pathogenomics to public health research under current research governance structures. Combining pathogen WGS with event-based data surveillance systems, however, is likely to be controversial because of a lack of public trust, even when the potential public health benefits are clear. Any suggestion of private sector involvement or commercialisation of WGS or surveillance data was unanimously rejected.
| S-EPMC7183724 | biostudies-literature
Project description:ObjectiveTo investigate how the general public trades off explainability versus accuracy of artificial intelligence (AI) systems and whether this differs between healthcare and non-healthcare scenarios.Materials and methodsCitizens' juries are a form of deliberative democracy eliciting informed judgment from a representative sample of the general public around policy questions. We organized two 5-day citizens' juries in the UK with 18 jurors each. Jurors considered 3 AI systems with different levels of accuracy and explainability in 2 healthcare and 2 non-healthcare scenarios. Per scenario, jurors voted for their preferred system; votes were analyzed descriptively. Qualitative data on considerations behind their preferences included transcribed audio-recordings of plenary sessions, observational field notes, outputs from small group work and free-text comments accompanying jurors' votes; qualitative data were analyzed thematically by scenario, per and across AI systems.ResultsIn healthcare scenarios, jurors favored accuracy over explainability, whereas in non-healthcare contexts they either valued explainability equally to, or more than, accuracy. Jurors' considerations in favor of accuracy regarded the impact of decisions on individuals and society, and the potential to increase efficiency of services. Reasons for emphasizing explainability included increased opportunities for individuals and society to learn and improve future prospects and enhanced ability for humans to identify and resolve system biases.ConclusionCitizens may value explainability of AI systems in healthcare less than in non-healthcare domains and less than often assumed by professionals, especially when weighed against system accuracy. The public should therefore be actively consulted when developing policy on AI explainability.
| S-EPMC8522832 | biostudies-literature
Project description:BackgroundOlder adults are keeping their natural teeth longer, spurring calls for dental coverage under Medicare. Although Medicare dental coverage would benefit all older adults, the poorest among them are already eligible for dental benefits through Medicaid. The authors examine the association between states' Medicaid adult dental benefits and dental care use and tooth loss among low-income older adults.MethodsUsing the Behavioral Risk Factor Surveillance System data from 2014, 2016, and 2018, the authors examined adults 65 years or older. The outcomes examined included annual dental visit and partial and complete tooth loss. Poisson regressions were used to obtain risk ratios after adjusting for covariates.ResultsStates' Medicaid adult dental benefits were significantly associated with dental care use, with low-income older adults in states with no coverage having the lowest probability of visiting a dentist (risk ratio [RR], 0.83; 95% CI, 0.74 to 0.94), followed by emergency-only coverage (RR, 0.91; 95% CI, 0.84 to 0.98) and limited benefits (RR, 0.91; 95% CI, 0.85 to 0.98) relative to states with extensive benefits. There were no significant differences in either partial or complete tooth loss.ConclusionsStates' Medicaid adult dental benefits are significantly associated with dental visits among low-income seniors. Providing comprehensive dental benefits under Medicaid can improve access to dental care among low-income older adults.Practical implicationsAs the older adult patient population grows, the poorest older adults may face barriers to dental care in the absence of dental coverage. Dental professionals must engage in advocating for comprehensive dental coverage, especially for vulnerable populations.
| S-EPMC8330417 | biostudies-literature
Project description:Limited studies have reported vitamin D status and health outcomes in care home residents, a group at risk of vitamin D deficiency. This study investigated serum 25-hydroxyvitamin D (25-OHD) concentrations in older adults within care homes in Northern Ireland (NI) and its association with musculoskeletal health (ultrasound T-score, muscle strength, Timed Up & Go test (TUG)), bone turnover markers (BTMs), and immune function markers. A total of 87 participants were recruited with mean ± SD age 83.2 ± 7.9 years. Mean ± SD serum 25-OHD concentration (n 69) was 49.52 ± 35.58 nmol/L. Vitamin D deficiency (25-OHD <25 nmol/L) was observed in 34.8% (n 24) of participants with 17.4% (n 12) classified as insufficient (25-OHD 25−50 nmol/L) and 47.8% (n 33) as sufficient (25-OHD >50 nmol/L). 25-OHD concentration was not an independent predictor of T-score, muscle strength, TUG, or inflammatory cytokines. After adjusting for covariates, a significant negative association was observed between 25-OHD concentration and the BTMs; osteocalcin (β = −0.395; p = 0.001), procollagen type 1 N propeptide (P1NP) (β = −0.320; p = 0.012), and C-terminal telopeptide of type 1 collagen (CTX) (β = −0.377; p = 0.003). Higher 25-OHD concentration was positively associated with use of vitamin D ± calcium supplementation (β = 0.610; p < 0.001). Vitamin D deficiency and insufficiency were highly prevalent in this sample of care home residents in NI. Higher 25-OHD concentration was associated with greater supplement use and with reduced bone turnover, which in this population is linked with reduced bone loss. These findings emphasize the need for a mandatory vitamin D ± calcium supplementation policy specific for care home residents.
| S-EPMC9268702 | biostudies-literature
Project description:A substantial body of research describes the distribution, causes and potential reduction of health inequalities, yet little scholarship examines public understandings of these inequalities. Existing work is dominated by small-scale, qualitative studies of the experiences of specific communities. As a result, we know very little about what broader publics think about health inequalities; and even less about public views of potential policy responses. This is an important gap since previous research shows many researchers and policymakers believe proposals for 'upstream' policies are unlikely to attract sufficient public support to be viable. This mixed methods study combined a nationally representative survey with three two-day citizens' juries exploring public views of health inequalities and potential policy responses in three UK cities (Glasgow, Manchester and Liverpool) in July 2016. Comparing public opinion elicited via a survey to public reasoning generated through deliberative processes offers insight into the formation of public views. The results challenge perceptions that there is a lack of public support for upstream, macro-level policy proposals and instead demonstrate support for proposals aiming to tackle health inequalities via improvements to living and working conditions, with more limited support for proposals targeting individual behavioural change. At the same time, some macro-economic proposals, notably those involving tax increases, proved controversial among study participants and results varied markedly by data source. Our analysis suggests that this results from three intersecting factors: a resistance to ideas viewed as disempowering (which include, fundamentally, the idea that health inequalities exist); the prevalence of individualising and fatalistic discourses, which inform resistance to diverse policy proposals (but especially those that are more 'upstream', macro-level proposals); and a lack of trust in (local and national) government. This suggests that efforts to enhance public support for evidence-informed policy responses to health inequalities may struggle unless these broader challenges are also addressed.
| S-EPMC8711040 | biostudies-literature
Project description:BACKGROUND:Smart homes are considered effective solutions for home health care for the elderly, as smart home technologies can reduce care costs and improve elderly residents' independence. To develop a greater understanding of smart homes for health care services (SHHSs), this study accentuated the necessity of ecological approaches with an emphasis on environmental constraints. This study was based on 2 rationales: (1) users are inclined to perceive the service quality and service experience from environments (ie, servicescape) owing to the intangibility of health care and the pervasiveness of smart home technologies, and (2) both service domains are complex adaptive systems in which diversified and undefined service experiences-not only a few intended service flows-can be generated by complex combinations of servicescape elements. OBJECTIVE:This study proposed the conceptual framework of a Smart Servicescape Wheel (SSW) as an ecological approach delineating the extensive spectrum of environmental constraints in SHHSs. METHODS:The SSW framework was established based on a literature review. RESULTS:Generally divided by perceptible and imperceptible servicescapes, the SSW consists of the perceptible Physical scape (ie, hardware components, environmental cues, and human states) and Social scape (ie, service relationships and social relationships) as well as the imperceptible Datascape (ie, computing intelligence, databases, and communication networks). Following the ecological approach, each category of the SSW is subdivided and defined at the level of components or functions. CONCLUSIONS:The SSW's strengths lie in the various application opportunities for SHHSs. In terms of service planning and development, the SSW can be utilized to (1) establish the requirements for SHHS development, (2) associate with work domain analysis by defining component layers, and (3) understand the real contexts of SHHSs for the enhanced prediction of diverse service experiences. Regarding service management, it can be applied to develop measurement items for the operation and evaluation of SHHSs.
| S-EPMC6384540 | biostudies-literature
Project description:Oxygen therapy is an integral part of the treatment of critically ill patients. Maintenance of adequate oxygen delivery to vital organs often requires the administration of supplemental oxygen, sometimes at high concentrations. Although oxygen therapy is lifesaving, it may be associated with deleterious effects when administered for prolonged periods at high concentrations. Here, we review the recent advances in our understanding of the molecular responses to hypoxia and high levels of oxygen and review the current guidelines for oxygen therapy in critically ill patients.
| S-EPMC3616683 | biostudies-other