People with disability and privacy in precision medicine research: what's at stake?

Re-identification from data used in precision medicine research is presumed to create minimal risk but may disproportionately impact health disparity populations. We consider plausible privacy risks and the negative ramifications thereof for people with disabilities, the largest health disparity population in the USA, and suggest measures to address these concerns.

Inclusion of people with disabilities in Chilean health policy: a policy analysis.

BACKGROUND: Around 18% of the population in Chile has disabilities. Evidence shows that this population has greater healthcare needs, yet they face barriers to accessing healthcare due to health system failures. This paper aims to assess the inclusion of people with disabilities in health policy documents and to explore the perceptions of key national stakeholders regarding the policy context, policy processes, and actors involved. METHODS: A policy content analysis was conducted of 12 health policy documents using the EquiFrame framework, adapted to assess disability inclusion. Documents were reviewed and rated on their quality of commitment against 21 core concepts of human rights in the framework. Key national stakeholders (n = 15) were interviewed, and data were thematically analysed under the Walt and Gilson Policy Analysis Triangle, using NVivo R1. RESULTS: Core human rights concepts of disability were mentioned at least once in nearly all health policy documents (92%). However, 50% had poor policy commitments for disability. Across policies, Prevention of health conditions was the main human rights concept reflected, while Privacy of information was the least referenced concept. Participants described a fragmented disability movement and health policy, related to a dominant biomedical model of disability. It appeared that disability was not prioritized in the health policy agenda, due to ineffective mainstreaming of disability by the Government and the limited influence and engagement of civil society in policy processes. Moreover, the limited existing policy framework on disability inclusion is not being implemented effectively. This implementation gap was attributed to lack of financing, leadership, and human resources, coupled with low monitoring of disability inclusion. CONCLUSIONS: Improvements are needed in both the development and implementation of disability-inclusive health policies in Chile, to support the achievement of the right to healthcare for people with disabilities and ensuring that the health system truly "leaves no one behind".

INTRODUCCIóN: Alrededor del 18% de la población de Chile tiene discapacidad. Los datos demuestran que esta población tiene mayores necesidades de salud, pero se enfrenta a barreras para acceder a la salud debido a las deficiencias del sistema sanitario. El objetivo de este estudio es evaluar la inclusión de las personas con discapacidad en las políticas sanitarias y explorar las percepciones de actores nacionales en relación al contexto político, los procesos políticos y los actores implicados. MéTODOS: Se realizó un análisis de contenido de 12 políticas sanitarias utilizando el marco EquiFrame, adaptado para discapacidad. Se calificó la calidad de compromiso de las políticas con respecto a 21 conceptos de derechos humanos del EquiFrame. Se entrevistó a 15 actores nacionales, y los datos se analizaron temáticamente según el Triángulo de Políticas de Walt y Gilson, utilizando NVivo R1. RESULTADOS: Los conceptos de derechos humanos en materia de discapacidad se mencionaron al menos una vez en casi todas las políticas sanitarias (92%). Sin embargo, en el 50% de los casos los compromisos políticos en materia de discapacidad eran escasos. En todas las políticas, la Prevención de los problemas de salud fue el principal concepto de derechos humanos reflejado, mientras que la Privacidad de la información fue el concepto menos mencionado. Los participantes describieron un movimiento de la discapacidad y una política sanitaria fragmentados, relacionados con un modelo biomédico dominante de la discapacidad. Pareciera que la discapacidad no es prioritaria en la agenda política sanitaria, debido a su ineficaz integración por parte del Gobierno y a la limitada participación de la sociedad civil en los procesos políticos. Además, el limitado marco político existente sobre salud inclusiva no se está implementando eficazmente. Esta deficiencia en la implementación se atribuyó a la falta de financiamiento, liderazgo y recursos humanos, junto con el escaso monitoreo de la discapacidad. CONCLUSIONES: Se requieren mejoras tanto en el desarrollo como en la implementación de políticas de salud inclusivas de la discapacidad en Chile, para apoyar el alcance del derecho a la salud de las personas con discapacidad y asegurar que el sistema de salud realmente "no deje a nadie atrás".

Exploring Consumer Experiences of Barriers and Enablers to Accessing Rehabilitation That Meets Their Needs: The Rehabilitation Choices Study, Part 2-Consumer Perspectives.

INTRODUCTION: Improved access to rehabilitation is highlighted as a key pathway to achieving the World Health Organisation's (WHO) goal of ensuring healthy lives and promoting well-being for all (Sustainable Development Goal 3). This article is the second in a two-part series outlining the findings from the Rehabilitation Choices study, which aimed to identify how health professionals and consumers in Australia are informed to make decisions about rehabilitation, and their experience with barriers and enablers to accessing that rehabilitation. In this study, we present the perspectives of consumers with different health conditions and a range of experiences with rehabilitation services. METHODS: This was a qualitative study using focus groups and semi-structured interviews. People with self-reported lived experience of rehabilitation and carers were recruited using maximum variation sampling. Thematic analysis of data was conducted using an inductive approach. RESULTS: Fifty-six consumers with diverse lived experiences of rehabilitation (19-80 years, 49 patients, 7 carers) participated in focus groups and interviews to discuss how they sourced information about rehabilitation and their experiences of what made it hard or easy to access rehabilitative care to meet their needs. Four themes were produced from the data: (1) service-centricity of options limits access, (2) access is the patient's responsibility, (3) enabling decision-making about rehabilitation with appropriate information and (4) provision of a psychologically safe environment. CONCLUSIONS: Any planned (re)design of services to improve consumer access to rehabilitation should consider the themes identified in this study. This will ensure that consumers are provided with rehabilitation options that suit their holistic and unique needs beyond consideration of their medical diagnoses, and are actively supported to navigate this access, provided with information to help them make informed choices and provided a psychologically safe environment to engage effectively with rehabilitation. PATIENT OR PUBLIC CONTRIBUTION: Three consumer research partners with lived experience of rehabilitation as patients or carers were core team members. They were involved in the design and implementation of the recruitment and communications strategies, design of the interview approach and discussion guide, contributed to the interpretation and contextualisation of findings and writing of this manuscript and are included as co-authors (A. O., T. W. and S. W.).

Understanding factors influencing people with disabilities' participation in sports and cultural activities.

BACKGROUND: Improving people with disabilities' participation in sports and cultural activities benefits their physical and mental health. However, only a few studies have examined the factors that influence participation systematically. METHODS: Using the survey data gathered from 4,319 disabled people living in a district in Wuhan, China, this study explored the impacts of sports and cultural activity participation in terms of individual physiological characteristics, socioeconomic factors, and built environmental features. The sports and cultural facility supply and the walkability index of their community environment were calculated to assess built environment features. Binary logistic regression models were also used to investigate the influence of the aforementioned variables. RESULTS: There is a significant positive correlation between sports and cultural activity participation and education (OR = 3.44, p < 0.01), employment status (OR = 2.04, p < 0.01), as well as the number of cultural facilities (OR = 1.33, p < 0.01) in the neighborhood area. No significant association was found between the inclination to participate frequently and individual psychological factors. CONCLUSION: Regarding people with disabilities' participation in sports and cultural activities, socioeconomic and built environment factors are more influential than individual psychological ones. The findings can give ideas for identifying targeted and comprehensive interventions to promote a healthy lifestyle for people with disabilities.

Internet use and difficulties in acquiring health resources among older adults with disabilities during the COVID-19 pandemic: a population-based cross-sectional study.

BACKGROUND: The various restrictions caused by the COVID-19 pandemic may have worsened the digital divide and health inequality. However, research to ascertain the association between Internet use and difficulties in acquiring health resources among older adults with disabilities is scarce. This study aimed to explore the relationship between Internet use and difficulties in acquiring health resources among older adults with disabilities during the COVID-19 pandemic and explore the associated factors by disability severity. METHODS: Data from the 2020 survey of people with disabilities in South Korea were used. This secondary analysis study included 4,871 older adults aged 55 and above among 7,025 total responders. Complex sample logistic regression analyses were conducted to identify the association between Internet use and difficulties in acquiring health resources during the pandemic. RESULTS: Only 23.66% of older adults with disabilities used the Internet. Internet non-users were more likely to experience difficulties in obtaining health resources than Internet users. The relationship between Internet non-use and difficulties in acquiring COVID-19-related information (OR 1.57, 95% CI 1.28-1.92) and buying and using personal protective equipment (OR 1.36, 95% CI 1.11-1.65) were statistically significant in the overall sample. Whereas, difficulties with using medical services were not statistically significantly associated with Internet use. Additionally, factors associated with difficulties in acquiring health resources differed by disability severity. CONCLUSIONS: Considering that older adults with disabilities experience triple the burden amid COVID-19 due to old age, disabilities, and the digital divide, policymakers, healthcare professionals, and engineers should aim to narrow the gaps between Internet users and Internet non-users among this population. Narrowing the gaps will make decreasing health gaps and increasing well-being among older adults with disabilities more attainable.

Effects of disability-related limitations in daily living on unmet needs: a longitudinal-study1.

BACKGROUND: Unmet health needs are particularly important to people with disabilities; however, these unmet needs owing to limitations in daily life have been under-researched thus far. This study examined the effects of disability-related limitations in daily life on unmet needs. METHODS: This study included 5,074 adults with disabilities from the 2018-2020 Korea Disability and Life Dynamics Panel. We analyzed the effects of disability-related limitations in daily life on unmet needs using logistic regression with a generalized estimating equation model. RESULTS: Overall, 4.8% men and 4.6% women with disabilities had unmet needs. For men, unmet needs were 1.46 times (95% confidence interval [CI] 1.09-1.96) higher for those with moderate limitations in daily life. For women, unmet needs were 1.79 times (95% CI 1.22-2.39) higher when there were moderate limitations in daily life. The prominent factors causing this effect were physical or brain lesion disability for men and internal or facial disability and burden of medical expenses for women. CONCLUSIONS: Limitations in daily life due to disability increase the risk of having unmet needs, an effect that is significantly more pronounced in men. These unmet needs differ depending on an individual's sex, disability type, limited body parts, and other specific causes. Efforts are required to reduce the unmet needs of people with disabilities by considering the type of disability, impaired body parts, and causes of unmet needs in daily life.

Association between health insurance programs and rehabilitation services utilisation among people with disabilities: evidence from China.

OBJECTIVES: Rehabilitation is crucial to improve the health status of people with disabilities. Previous studies mainly analysed the impact of health insurance on utilisation of general health services; the relationship between health insurances and rehabilitation services utilisation among Chinese people with disabilities has been long neglected. This study aimed to analyse the association between health insurance programs and rehabilitation services utilisation among disabled people. STUDY DESIGN: This was a cross-sectional study. METHODS: The data used in this study were derived from 2021 National Household Income Survey of Disabled People and National Basic Database of People with Disabilities conducted by China Disabled Persons' Federation. Logistic regression model was used to analyse the relationship between health insurance and rehabilitation services utilisation, and the propensity score matching method was used to check the robustness of the results. RESULTS: (1) Disabled people insured by the Basic Medical Insurance System for Urban Employees (BMISUE) and the Basic Medical Insurance System for Urban and Rural Residents (BMISURR) were positively associated with rehabilitation service utilisation (odds ratio [OR] = 1.852, 95% confidence interval [CI]:1.268, 2.707; OR = 1.375, 95% CI: 0.962, 1.966). (2) The utilisation level of rehabilitation service among disabled people insured by BMISUE was significantly higher than those insured by BMISURR (OR = 1.355, 95% CI: 1.161, 1.581). (3) The supply of rehabilitation services at the community level was positively correlated with the utilisation by people with disabilities. CONCLUSION: Health insurance can improve the financial accessibility of using rehabilitation services, and the utilisation level will increase as the benefits level of health insurance increase.

Organizational Practices for the Inclusion of People with Disabilities. A Scoping Review.

PURPOSE: The purpose of the scoping review presented in this article is to map the state-of-the-art and development of empirical research of organizational practices designed to include people with disabilities. It contributes to debates on demand-side approaches in promoting the labour-market participation of people with disabilities. METHODS: A literature search took place in PsychINFO, Web of Science, Sociological Abstracts and Sociological Index. Articles included empirical studies published between 2000 and 2023. RESULTS: The search resulted in 10,535 unique articles of which 146 were included in the review. Organizational inclusion practices have received increasing attention in academic journals in a variety of research fields. In terms of content two groups of studies can be distinguished: hiring studies and studies focusing on organizational practices aimed at employees with disabilities. Hiring studies include studies analysing relationships between a large range of factors and actual hiring or intention to hire as well as studies of a more exploratory nature. Studies focusing on employees with disabilities look at outcomes of specific organizational practices; the conditions promoting their implementation; or explore practices in organizations employing people with disabilities. DISCUSSION: Based on the findings of the review three suggestions for future research are discussed: (i) internationally comparative studies; (ii) specific attention to small and medium sized enterprises in studies of inclusion; (iii) systematic reviews as follow-ups to scoping reviews.

Maxillectomy patients' speech and performance of contemporary speaker-independent automatic speech recognition platforms in Japanese.

BACKGROUND: Automatic speech recognition (ASR) can potentially help older adults and people with disabilities reduce their dependence on others and increase their participation in society. However, maxillectomy patients with reduced speech intelligibility may encounter some problems using such technologies. OBJECTIVES: To investigate the accuracy of three commonly used ASR platforms when used by Japanese maxillectomy patients with and without their obturator placed. METHODS: Speech samples were obtained from 29 maxillectomy patients with and without their obturator and 17 healthy volunteers. The samples were input into three speaker-independent speech recognition platforms and the transcribed text was compared with the original text to calculate the syllable error rate (SER). All participants also completed a conventional speech intelligibility test to grade their speech using Taguchi's method. A comprehensive articulation assessment of patients without their obturator was also performed. RESULTS: Significant differences in SER were observed between healthy and maxillectomy groups. Maxillectomy patients with an obturator showed a significant negative correlation between speech intelligibility scores and SER. However, for those without an obturator, no significant correlations were observed. Furthermore, for maxillectomy patients without an obturator, significant differences were found between syllables grouped by vowels. Syllables containing /i/, /u/ and /e/ exhibited higher error rates compared to those containing /a/ and /o/. Additionally, significant differences were observed when syllables were grouped by consonant place of articulation and manner of articulation. CONCLUSION: The three platforms performed well for healthy volunteers and maxillectomy patients with their obturator, but the SER for maxillectomy patients without their obturator was high, rendering the platforms unusable. System improvement is needed to increase accuracy for maxillectomy patients.

Inclusion of People With Disabilities in Community Health Needs Assessments in Florida, United States.

Community health needs assessments (CHNAs) play a crucial role in identifying health needs of communities. Yet, unique health needs of people with disabilities (PWDs) are often underrecognized in public health practice. In 2010, the Patient Protection and Affordable Care Act (ACA) required the implementation of standardized data collection guidelines, including disability status, among federal agencies. The extent to which guidance from ACA and the U.S. Centers for Disease Control and Prevention has impacted disability inclusion in CHNAs is unknown. This study used a content analysis approach to review CHNAs conducted by local health councils and the top 11 nonprofit hospitals in Florida (n = 77). We coded CHNAs based on mentioning disability in CHNA reports, involving disability-related stakeholders, and incorporating data on disability indicators. Findings indicate that PWDs are widely not included in CHNAs in Florida, emphasizing the need for equitable representation and comprehensive understanding of PWDs in community health planning.