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2.
Artigo em Alemão | MEDLINE | ID: mdl-31965193

RESUMO

Digital technologies in public health have the potential to improve health promotion and disease prevention by the efficient registration, storage, and processing of large amounts of health data. Digital public health also raises - like other technological developments - several ethical issues, which are discussed in this article.A fundamental question in the ethical evaluation of digital public health interventions concerns the goal of the intervention: An intervention should serve the established goals of public health and not financial interests, to realize potential health benefits for the population. In addition, equity issues are especially relevant, because digital public health may reduce or increase health inequalities in the population. Furthermore, the protection of privacy and potentially sensitive health data are relevant. As digital public health applications vary considerably, each application has to be assessed individually regarding its ethical implications. This article therefore presents a normative framework and a methodological approach for the ethical evaluation of digital public health applications. By developing ethically justified recommendations for the design and use of digital public health applications, the ethical evaluation can contribute to an ethically justified practice of digital public health.


Assuntos
Assistência à Saúde/métodos , Saúde Pública/ética , Alemanha , Promoção da Saúde , Humanos , Princípios Morais , Telemedicina/ética
4.
Aust N Z J Public Health ; 43(6): 538-543, 2019 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-31667912

RESUMO

OBJECTIVE: Aboriginal and Torres Strait Islander Community Controlled Health Organisations (ACCHOs) have been identified as having an important role in improving the health and wellbeing of individuals in prison; however, a lack of information exists on how to strengthen this role. This paper explores the experiences of ACCHO staff in primary health care to individuals inside or leaving prison. METHODS: Nineteen staff from four ACCHOs were interviewed. ACCHO selection was informed by proximity to prisons, town size and/or Local Government Area offending rates. Thematic analysis of the interviews was undertaken. RESULTS: While most ACCHOs had delivered post-release programs, primary health care delivery to prisoners was limited. Three themes emerged: i) a lack of access to prisoners; ii) limited funding to provide services to prisoners; and iii) the need for a team approach to primary health care delivery. CONCLUSION: A holistic model of care underpinned by a reliable funding model (including access to certain Medicare items) and consistent access to prisoners could strengthen ACCHOs' role in primary health care delivery to people inside or leaving prison. Implications for public health: ACCHOs have an important role to play in the delivery of primary health care to prisoners. Existing models of care for prisoners should be examined to explore how this can occur.


Assuntos
Assistência à Saúde/organização & administração , Acesso aos Serviços de Saúde/estatística & dados numéricos , Serviços de Saúde do Indígena/organização & administração , Grupo com Ancestrais Oceânicos/psicologia , Atenção Primária à Saúde/organização & administração , Prisioneiros , Assistência à Saúde/métodos , Feminino , Humanos , Masculino , Grupo com Ancestrais Oceânicos/estatística & dados numéricos , Atenção Primária à Saúde/métodos , Prisioneiros/psicologia , Prisioneiros/estatística & dados numéricos , Pesquisa Qualitativa , Apoio Social
5.
Adv Exp Med Biol ; 1192: 263-279, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31705499

RESUMO

This article gives an overview of the concept and brain mechanisms of Internet game and smartphone addiction and the applicability of precision medicine and smart healthcare system. Internet game and smartphone addiction are categorized as behavioral addictions, which share similar phenomenology and neurobiological underpinnings with substance addictions. Neuroimaging studies revealed the alteration in the functional activity and structure of individuals with Internet game and smartphone addiction, which also can be potent biomarkers. Precision medicine is defined as treatments targeted to the individual patients on the basis of genetic, biomarker, phenotypic or psychosocial characteristics. Recent advances in high-throughput technology and bioinformatics have enabled us to integrate these big data with behavioral data collected from smartphones or other wearable devices. Data collected via smart devices can be transferred to medical institute and integrated in order to diagnose current status precisely and to provide optimal intervention. The feedbacks of intervention are sent back to the medical provider via self-reports or objective measures to evaluate the appropriateness of the intervention. In conclusion, Internet game and smartphone addiction can be diagnosed precisely using high-throughput technology and optimally managed via smart healthcare system.


Assuntos
Comportamento Aditivo/diagnóstico , Terapia Cognitivo-Comportamental/métodos , Assistência à Saúde/métodos , Internet , Transtornos Mentais/epidemiologia , Medicina de Precisão , Smartphone , Comportamento Aditivo/terapia , Humanos , Neuroimagem , Transtornos Relacionados ao Uso de Substâncias , Jogos de Vídeo
7.
Health Syst Transit ; 21(2): 1-166, 2019 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-31596240

RESUMO

This analysis of the Finnish health system reviews developments in its organization and governance, financing, provision of services, health reforms and health system performance. Finland is a welfare state witha high standard of social and living conditions and a low poverty rate. Its health system has a highly decentralized administration, multiple funding sources, and three provision channels for statutory services in first-contact care: the municipal system, the national health insurance system, and occupational health care. The core health system is organized by the municipalities (i.e. local authorities) which are responsible for financing primary and specialized care. Health financing arrangements are fragmented, with municipalities, the health insurance system, employers and households all contributing substantial shares. The health system performs relatively well, as health services are fairly effective, but accessibility may be an issue due to long waiting times and relatively high levels of cost sharing. For over a decade, there has been broad agreement on the need to reform the Finnish health system, but reaching a feasible policy consensus has been challenging.


Assuntos
Assistência à Saúde/organização & administração , Financiamento da Assistência à Saúde , Qualidade da Assistência à Saúde , Assistência à Saúde/métodos , Finlândia , Reforma dos Serviços de Saúde , Política de Saúde , Serviços de Saúde/estatística & dados numéricos , Humanos , Seguro Saúde/organização & administração , Política
8.
J Altern Complement Med ; 25(12): 1206-1214, 2019 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-31580714

RESUMO

Objective: To quantify differences in patient expectations of healthscape (e.g., interior environment) across Western medicine (WM) and Traditional Chinese Medicine (TCM) paradigms. Data sources/study setting: Primary survey data comprise 469 Taiwanese consumers. National insurance coverage of both TCM and WM is an ideal setting to test for differences in healthscape expectations. Study design: Respondents report their recent experience as either exclusive users of TCM, exclusive WM, neither, or dual usage (both TCM and WM), and are randomly assigned to one of two surveys (identical except one refers to WM contexts, the other TCM) to rate the importance of 28 healthscape factors derived from previous studies. Data collection/extraction methods: Multivariate analysis of variance is used to test the research hypotheses. Principal findings: Dual users accept some differences across paradigms. In contrast, exclusive WM users apply their existing WM expectations to TCM contexts, raising the possibility of dissatisfaction and low adoption. Conclusions: A person's experience with TCM is related to acceptance of healthscape differences. Medical service providers of TCM, and by extension complementary and alternative medicine, should devise strategies to ease initial visitation by exclusive WM users. Healthscape designs need not be modeled closely on a WM standard, as dual users accept differences.


Assuntos
Terapias Complementares/estatística & dados numéricos , Comportamento do Consumidor/estatística & dados numéricos , Assistência à Saúde , Medicina Tradicional Chinesa , Assistência à Saúde/métodos , Assistência à Saúde/estatística & dados numéricos , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Satisfação do Paciente/estatística & dados numéricos , Taiwan , Adulto Jovem
9.
Med Care ; 57(11): 905-912, 2019 11.
Artigo em Inglês | MEDLINE | ID: mdl-31568165

RESUMO

BACKGROUND: It is unclear whether Medicare data can be used to identify type and degree of collaboration between primary care providers (PCPs) [medical doctors (MDs), nurse practitioners, and physician assistants] in a team care model. METHODS: We surveyed 63 primary care practices in Texas and linked the survey results to 2015 100% Medicare data. We identified PCP dyads of 2 providers in Medicare data and compared the results to those from our survey. Sensitivity, specificity, and positive predictive value (PPV) of dyads in Medicare data at different threshold numbers of shared patients were reported. We also identified PCPs who work in the same practice by Social Network Analysis (SNA) of Medicare data and compared the results to the surveys. RESULTS: With a cutoff of sharing at least 30 patients, the sensitivity of identifying dyads was 27.8%, specificity was 91.7%, and PPV 72.2%. The PPV was higher for MD-nurse practitioner/physician assistant pairs (84.4%) than for MD-MD pairs (61.5%). At the same cutoff, 90% of PCPs identified in a practice from the survey were also identified by SNA in the corresponding practice. In 5 of 8 surveyed practices with at least 3 PCPs, about ≤20% PCPs identified in the practices by SNA of Medicare data were not identified in the survey. CONCLUSIONS: Medicare data can be used to identify shared care with low sensitivity and high PPV. Community discovery from Medicare data provided good agreement in identifying members of practices. Adapting network analyses in different contexts needs more validation studies.


Assuntos
Assistência à Saúde/estatística & dados numéricos , Medicare/estatística & dados numéricos , Equipe de Assistência ao Paciente/estatística & dados numéricos , Atenção Primária à Saúde/estatística & dados numéricos , Interpretação Estatística de Dados , Assistência à Saúde/métodos , Humanos , Colaboração Intersetorial , Profissionais de Enfermagem/estatística & dados numéricos , Assistentes Médicos/estatística & dados numéricos , Médicos de Atenção Primária/estatística & dados numéricos , Atenção Primária à Saúde/métodos , Texas , Estados Unidos
10.
Infect Dis Poverty ; 8(1): 81, 2019 Sep 13.
Artigo em Inglês | MEDLINE | ID: mdl-31514738

RESUMO

BACKGROUND: Despite great medical advances and scientific progress over the past century, one billion people globally still lack access to basic health care services. In the context of the 2030 Agenda for Sustainable Development social innovation models aim to provide effective solutions that bridge the health care delivery gap, address equity and create social value. This commentary highlights the roles of multilateral organizations and governments in creating an enabling environment where social innovations can more effectively integrate into health systems to maximize their impact on beneficiaries. MAIN TEXT: The integration of social innovations into health systems is essential to ensure their sustainability and the wide dissemination of their impact. Effective partnerships, strong engagement with and endorsement by governments and communities, regulations, trust and sometimes willingness are key factors to enhance system integration, replication and dissemination of the models. Three examples of social innovations selected by the Social Innovation in Health Initiative illustrate the importance of engaging with governments and communities in order to link, integrate and synergize their efforts. Key challenges that they encountered, and lessons learnt are highlighted. Multilateral organizations and governments increasingly engage in promoting and supporting the development, testing and dissemination of social innovations to address the health care delivery gap. They play an important role in creating an enabling environment. This includes promoting the concept of social innovation in health care delivery, spreading social innovation approach and lessons learnt, fostering partnerships and leveraging resources, convening communities, health system actors and various stakeholders to work together across disciplines and sectors, and nurturing capacity in countries. CONCLUSIONS: Multilateral organizations and local and national governments have a critical role to play in creating an enabling environment where social innovations can flourish. In supporting and disseminating social innovation approach, multilateral organizations and governments have a great opportunity to accelerate Universal Health Coverage and the achievement of the Sustainable Development Goals.


Assuntos
Assistência à Saúde/métodos , Difusão de Inovações , Governo , Agências Internacionais/estatística & dados numéricos , Assistência à Saúde/legislação & jurisprudência , Assistência à Saúde/estatística & dados numéricos , Humanos
11.
Maturitas ; 129: 1-5, 2019 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-31547907

RESUMO

BACKGROUND: The care model for supporting elderly people living independently at home relies on the informal and formal assistance of caregivers. Information and communication technology (ICT) offers new approaches for informal care services for this group. METHODS: A longitudinal observational pilot study was carried out in home services in France. Employees of the ADMR home services followed 130 elderly people living at home and who were no more than moderately impaired. A single visual analogue scale (VAS) was used on a smartphone to assess global health every time a person was visited. An alert system was devised to inform the elderly person and/or a responsible person of any deterioration in health status. All medical and social events were recorded throughout the 9-month study. RESULTS: 138 people were enrolled and 106 were evaluated. 37 alerts were observed. 21 were confirmed and 16 were false positives. Only employees untrained in the use of the system generated false positive alerts. Six severe medical alerts were observed, including one cancer undetected by the physician, one hospitalization for diabetes, one hospitalization which led to death 6 months later and one hospitalization which resulted in follow-up care. CONCLUSIONS: Social workers can participate in the health system with all the ethical criteria of medicine. To our knowledge, this is the first ICT-based alert system that has been found to produce severe medical alerts by employees of home services.


Assuntos
Assistência à Saúde/métodos , Nível de Saúde , Aplicativos Móveis , Serviço Social , Idoso , Idoso de 80 Anos ou mais , Reações Falso-Positivas , Feminino , Hospitalização , Humanos , Vida Independente , Estudos Longitudinais , Masculino , Projetos Piloto , Smartphone
12.
Aust N Z J Public Health ; 43(6): 563-569, 2019 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-31535420

RESUMO

OBJECTIVE: To identify behavioural barriers of service provision within general practice that may be impacting the vaccination coverage rates of Aboriginal children in Perth, Western Australia (WA). METHODS: A purposive developed survey was distributed to 316 general practices across Perth and three key informant interviews were conducted using a mixed-methods approach. RESULTS: Of the surveyed participants (n=101), 67.4% were unaware of the low vaccination coverage in Aboriginal children; 64.8% had not received cultural sensitivity training in their workplace and 46.8% reported having inadequate time to follow up overdue child vaccinations. Opportunistic vaccination was not routinely performed by 30.8% of participants. Key themes identified in the interviews were awareness, inclusion and cultural safety. CONCLUSION: Inadequate awareness of the current rates, in association with a lack of cultural safety training, follow-up and opportunistic practice, may be preventing greater vaccination uptake in Aboriginal children in Perth. Cultural safety is a critical component of the acceptability and accessibility of services; lack of awareness may restrict the development of strategies designed to equitably address low coverage. IMPLICATIONS: The findings of this study provide an opportunity to raise awareness among clinicians in general practice and inform future strategies to equitably deliver targeted vaccination services to Aboriginal children.


Assuntos
Competência Cultural , Assistência à Saúde/métodos , Enfermeiras de Saúde da Família/psicologia , Medicina Geral/organização & administração , Serviços de Saúde do Indígena/organização & administração , Médicos/psicologia , Cobertura Vacinal/estatística & dados numéricos , Adulto , Criança , Saúde da Criança , Surtos de Doenças/prevenção & controle , Feminino , Acesso aos Serviços de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Grupo com Ancestrais Oceânicos , Vacinação , Cobertura Vacinal/tendências , Vacinas/administração & dosagem , Austrália Ocidental
13.
Niger J Clin Pract ; 22(9): 1180-1188, 2019 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-31489851

RESUMO

Background: Assessment of health-related quality of life (HRQOL) in resource-limited settings is critical to evaluate and improve the burden of morbidity and mortality associated with chronic medical disorders. There is a dearth of data on HRQOL among patients suffering from chronic medical disorders in Nigeria. This study assessed the HRQOL of participants with diabetes mellitus (DM), human immunodeficiency virus (HIV) infection, and cancer in a hospital setting with limited resources and highlighted associated factors. Methods: The WHOQOL-BREF instrument was used to study a cross section of the participants at the University of Nigeria Teaching Hospital, Enugu. Data were analyzed using Statistical Package for Social Sciences (SPSS). Results: The distribution of the 613 study population was diabetes mellitus 120, HIV 389, and various cancers 104. Majority (67.9%) earned less than $1 per day and only 7.5% had any form of health insurance. The HIV group had higher QoL scores. Younger age, higher educational status, being employed, and having a care giver were positively associated with higher QoL. Patients with no comorbidities (76.6%) had an overall higher QoL score. Conclusion: Majority of the patients living with chronic medical diseases in Enugu, Nigeria were poor, vulnerable, and without access to health insurance. People living HIV generally had better quality life than those with other health conditions. There is a huge unmet need for people living with chronic medical conditions in Nigeria, which require strategies to counteract.


Assuntos
Doença Crônica/terapia , Assistência à Saúde/métodos , Diabetes Mellitus Tipo 2/psicologia , Infecções por HIV/psicologia , Neoplasias/psicologia , Qualidade de Vida , Adolescente , Adulto , Idoso , Doença Crônica/psicologia , Comorbidade , Estudos Transversais , Diabetes Mellitus Tipo 2/epidemiologia , Feminino , Infecções por HIV/epidemiologia , Recursos em Saúde , Nível de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/epidemiologia , Nigéria/epidemiologia , Inquéritos e Questionários , Adulto Jovem
14.
Sensors (Basel) ; 19(17)2019 Sep 02.
Artigo em Inglês | MEDLINE | ID: mdl-31480772

RESUMO

Hospitals play an important role on ensuring a proper treatment of human health. One of the problems to be faced is the increasingly overcrowded patients care queues, who end up waiting for longer times without proper treatment to their health problems. The allocation of health professionals in hospital environments is not able to adapt to the demands of patients. There are times when underused rooms have idle professionals, and overused rooms have fewer professionals than necessary. Previous works have not solved this problem since they focus on understanding the evolution of doctor supply and patient demand, as to better adjust one to the other. However, they have not proposed concrete solutions for that regarding techniques for better allocating available human resources. Moreover, elasticity is one of the most important features of cloud computing, referring to the ability to add or remove resources according to the needs of the application or service. Based on this background, we introduce Elastic allocation of human resources in Healthcare environments (ElHealth) an IoT-focused model able to monitor patient usage of hospital rooms and adapt these rooms for patients demand. Using reactive and proactive elasticity approaches, ElHealth identifies when a room will have a demand that exceeds the capacity of care, and proposes actions to move human resources to adapt to patient demand. Our main contribution is the definition of Human Resources IoT-based Elasticity (i.e., an extension of the concept of resource elasticity in Cloud Computing to manage the use of human resources in a healthcare environment, where health professionals are allocated and deallocated according to patient demand). Another contribution is a cost-benefit analysis for the use of reactive and predictive strategies on human resources reorganization. ElHealth was simulated on a hospital environment using data from a Brazilian polyclinic, and obtained promising results, decreasing the waiting time by up to 96.4% and 96.73% in reactive and proactive approaches, respectively.


Assuntos
Hospitais , Computação em Nuvem , Assistência à Saúde/métodos , Humanos , Monitorização Fisiológica
16.
Medicine (Baltimore) ; 98(33): e16808, 2019 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-31415394

RESUMO

Evidence-based studies have revealed outcomes in patients with chronic kidney disease that differed depending on the design of care delivery. This study compared the effects of 3 types of nephrology care: multidisciplinary care (MDC), nephrology care, and non-nephrology care. We studied their effects on the risks of requiring dialysis and the differences between these methods had on long-term medical resource utilization and costs.We conducted a retrospective cohort study involving patients with an estimated glomerular filtration rate of (eGFR) ≤45 mL/min/1.73 m from 2005 to 2007. Patients were divided into MDC, non-MDC, and non-nephrology referral groups. Between-group differences with regard to the risk of requiring dialysis and annual medical utilization and costs were evaluated using a 5-year follow-up period.In total, 661 patients were included. After other covariates and the competing risk of death were taken into account, we observed a significant (56%) reduction in the incidence of dialysis in both the MDC and non-MDC groups relative to the non-nephrology referral group. Costs were markedly lower in the MDC group relative to the other groups (average savings: US$ 830 per year; 95% confidence interval: 367-1295; P < .001).For patients without nephrology referrals, MDC can substantially reduce their risk of developing end-stage renal disease and lower their medical costs. We therefore strongly advocate that all patients with an eGFR of ≤45 mL/min/1.73 m should be referred to a nephrologist and receive MDC.


Assuntos
Assistência à Saúde/economia , Custos de Cuidados de Saúde/estatística & dados numéricos , Nefrologia/economia , Diálise Renal/economia , Insuficiência Renal Crônica/economia , Idoso , Assistência à Saúde/métodos , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Nefrologia/métodos , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Equipe de Assistência ao Paciente/economia , Encaminhamento e Consulta/economia , Estudos Retrospectivos
17.
Artigo em Inglês | MEDLINE | ID: mdl-31394752

RESUMO

Public involvement (PI) is of great interest. However, little is known about this topic in the design, development, and/or implementation of health interventions in geriatric facilities. This study aimed to provide a critical overview of the involvement of caregivers and end-users in interventions in these facilities, based on Rifkin's analytical framework. This systematic review, supplemented by a questionnaire to the corresponding authors, covered non-drug intervention reports targeting nurses, doctors, residents, and their relatives. Articles were published in Pubmed, Medline, Scopus, and Cinahl, from January 2016 to April 2018. Ninety-seven articles were included. The review shows a low level or partial PI in geriatric facilities where it exists. These results are further supported by the authors' responses to the questionnaire. PI remains uncommon in geriatric institutions and consists of a consumerist model, suggesting the need for improved practices. More efforts are needed to experiment with recommendations to meet the challenges of PI and enhance the public ownership of interventions. The protocol was registered on Prospero under the number CRD42018098504.


Assuntos
Cuidadores/estatística & dados numéricos , Assistência à Saúde/métodos , Serviços de Saúde para Idosos/estatística & dados numéricos , Instituição de Longa Permanência para Idosos/estatística & dados numéricos , Protocolos Clínicos
18.
Presse Med ; 48(7-8 Pt 1): e209-e215, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31421945

RESUMO

AIM: Identified Palliative Care Beds (Lits Identifiés Soins Palliatifs - LISPs) is a French specificity. Primarily created to integrate palliative care culture into conventional hospital units, the relevance of this measure became a controversial issue. Nowadays, hospital teams continue to frequently encounter complex situations regarding medical care for palliative patients. To the best of our knowledge, there is only one study, a quantitative one, bridging the gap about that subject. It showed failure in practicing palliative care work around LISP. Our study is based on a qualitative method that complements the quantitative study. It aimed to describe difficulties that limit palliative care practices in managing adult patients in LISP. METHOD: This qualitative exploratory survey was conducted with a sample of health service professionals (n=20), from senior physicians to caregivers. Each semi-structured interview included open questions regarding their experiences, feelings and difficulties with palliative care practices on LISP. It also included closed questions concerning interviewee's demographics and career course. The data for this research were submitted to a two-stage analysis: first, a global review of each interview was performed to identify trends. Then, a detailed breakdown, question by question, was implemented. RESULTS: From a quantitative perspective, the interviews revealed 305 difficulties, indicating the gaps and barriers limiting the implementation of a palliative approach in these services. From a qualitative perspective, five topics raised our attention by their recurrence in discourses: (1) partial knowledge about palliative care definition and legislation mostly due to a lack of training; (2) need for time; (3) need for human resources; (4) need for communication; (5) hard time in transitioning from curative to palliative care. PERSPECTIVE: This survey gives the opportunity to understand health service professionals' difficulties in practicing palliative care in conventional medical services. It raises the central issue of the pricing reform on the health institutes activity. It also provides angles of inquiry to improve LISP effectiveness. This qualitative and descriptive study was designed to explore difficulties in practicing palliative care around LISP. Nevertheless, according to the size of the sample, results will need to be confirmed by a more extensive qualitative survey.


Assuntos
Continuidade da Assistência ao Paciente , Unidades Hospitalares/organização & administração , Cuidados Paliativos/organização & administração , Equipe de Assistência ao Paciente/organização & administração , Padrões de Prática Médica , Qualidade da Assistência à Saúde/organização & administração , Adulto , Atitude do Pessoal de Saúde , Cuidadores/organização & administração , Cuidadores/normas , Barreiras de Comunicação , Continuidade da Assistência ao Paciente/organização & administração , Continuidade da Assistência ao Paciente/normas , Assistência à Saúde/métodos , Assistência à Saúde/organização & administração , Assistência à Saúde/normas , Arquitetura de Instituições de Saúde/normas , França , Conhecimentos, Atitudes e Prática em Saúde , Número de Leitos em Hospital , Unidades Hospitalares/normas , Humanos , Entrevistas como Assunto , Satisfação no Emprego , Cuidados Paliativos/psicologia , Cuidados Paliativos/normas , Equipe de Assistência ao Paciente/normas , Padrões de Prática Médica/organização & administração , Padrões de Prática Médica/normas , Pesquisa Qualitativa , Qualidade da Assistência à Saúde/normas , Estudos Retrospectivos , Inquéritos e Questionários
19.
Qual Life Res ; 28(11): 2957-2967, 2019 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-31399859

RESUMO

PURPOSE: Central cancer registries collect data and provide population-level statistics that can be tracked over time; yet registries may not capture the full range of clinically relevant outcomes. Patient-generated health data (PGHD) include health/treatment history, biometrics, and patient-reported outcomes (PROs). Collection of PGHD would broaden registry outcomes to better inform research, policy, and care. However, this is dependent on the willingness of patients to share such data. This study examines cancer survivors' perspectives about sharing PGHD with central cancer registries. METHODS: Three U.S. central registries sampled colorectal, non-Hodgkin lymphoma, and metastatic breast cancer survivors 1-4 years after diagnosis, recruiting them via mail to participate in one of seven focus groups (n = 52). Group discussions were recorded, transcribed, and thematically analyzed. RESULTS: Most survivor-participants were unaware of the existence of registries. After having registries explained, all participants expressed their willingness to share PGHD with them if treated confidentially. Participants were willing to provide information on a variety of topics (e.g., medical history, medications, symptoms, financial difficulties, quality of life, biometrics, nutrition, exercise, and mental health), with a focus on long-term effects of cancer and its treatment. Participants' preferred mode for providing data varied. Participants were also interested in receiving information from registries. CONCLUSIONS: Our results suggest that registry-based collection of PGHD is acceptable to most cancer survivors and could facilitate registry-based efforts to collect PGHD/PROs. Central cancer registry-based collection of PGHD/PROs, especially on long-term effects, could enhance registry support of cancer control efforts including research and population health management.


Assuntos
Sobreviventes de Câncer/psicologia , Coleta de Dados/métodos , Assistência à Saúde/métodos , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida/psicologia , Sistema de Registros/normas , Feminino , Grupos Focais , Humanos , Masculino , Pessoa de Meia-Idade
20.
AIDS Behav ; 23(10): 2879-2888, 2019 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-31468297

RESUMO

Miami-Dade leads the nation in new HIV infections, and its Black communities experience the greatest disparities in outcomes. Our prior research found that street-based HIV testing facilitated by community health workers improved access to testing and care among Black adults in a controlled trial setting. Herein, we describe our efforts translating this CHW-led intervention into a community service for diverse Blacks in Miami. From December 2016 through August 2017, CHWs educated 1672 individuals about HIV transmission, prevention methods, and risk factor modification; 529 received HIV testing and/or linkage to care services. Approximately 5% of participants (n = 26) had rapid reactive results. This efficacious and culturally-acceptable model represents a powerful change in the delivery of HIV care and demonstrates how public health leaders can foster community engagement in the transition from research to service.


Assuntos
Agentes Comunitários de Saúde , Assistência à Saúde/métodos , Infecções por HIV , Acesso aos Serviços de Saúde , Adulto , Feminino , Humanos , Masculino , Programas de Rastreamento , Pesquisa Médica Translacional
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