Geographic Barriers Drive Disparities in Specialty Center Access for Older Adults with Huntington's Disease.

BACKGROUND: Huntington's Disease Society of America Centers of Excellence (HDSA COEs) are primary hubs for Huntington's disease (HD) research opportunities and accessing new treatments. Data on the extent to which HDSA COEs are accessible to individuals with HD, particularly those older or disabled, are lacking. OBJECTIVE: To describe persons with HD in the U.S. Medicare program and characterize this population by proximity to an HDSA COE. METHODS: We conducted a cross-sectional study of Medicare beneficiaries ages ≥65 with HD in 2017. We analyzed data on benefit entitlement, demographics, and comorbidities. QGis software and Google Maps Interface were employed to estimate the distance from each patient to the nearest HDSA COE, and the proportion of individuals residing within 100 miles of these COEs at the state level. RESULTS: Among 9,056 Medicare beneficiaries with HD, 54.5% were female, 83.0% were white; 48.5% were ≥65 years, but 64.9% originally qualified for Medicare due to disability. Common comorbidities were dementia (32.4%) and depression (35.9%), and these were more common in HD vs. non-HD patients. Overall, 5,144 (57.1%) lived within 100 miles of a COE. Race/ethnicity, sex, age, and poverty markers were not associated with below-average proximity to HDSA COEs. The proportion of patients living within 100 miles of a center varied from < 10% (16 states) to > 90% (7 states). Most underserved states were in the Mountain and West Central divisions. CONCLUSION: Older Medicare beneficiaries with HD are frequently disabled and have a distinct comorbidity profile. Geographical, rather than sociodemographic factors, define the HD population with limited access to HDSA COEs.

Abordaje del nuevo paciente e innovaciones / Approaching the new patient and innovations

La pandemia por SARS-CoV-2 ha acelerado el proceso de digitalización de la asistencia sanitaria. El cambio en el paradigma puede suponer un reto tanto para los profesionales sanitarios como para los pacientes. En este artículo se muestran la opinión de pacientes con distintos niveles de familiaridad con las nuevas tecnologías y la perspectiva de los profesionales sanitarios sobre el nuevo paciente y las innovaciones tecnológicas (AU)

The SARS-CoV-2 pandemic has accelerated the process of healthcare digitalization. This paradigm shift is a challenge for both healthcare professionals and patients. This article discusses the opinions of patients with different levels of familiarity with new technologies, as well as the perspective of healthcare professionals on new patients and technological innovations (AU)

Recent Advances in Cone-beam CT in Oral Medicine.

BACKGROUND: The cone-beam computed tomography (CBCT) technology has continuously evolved since its appearance in oral medicine in the early 2000s. OBJECTIVES: To present recent advances in CBCT in oral medicine: i) selection of recent and consensual evidence-based sources, ii) structured summary of the information based on an iterative framework and iii) compliance with ethical, public health and patient-centered concerns. MAIN FINDINGS: We will focus on technological advances, such as sensors and reconstruction algorithms used to improve the constant quality of the image and dosimetry. CBCT examination is now performed in almost all disciplines of oral medicine: currently, the main clinical disciplines that use CBCT acquisitions are endodontics and oral surgery, with clearly defined indications. Periodontology and ear, nose and throat medicine are more recent fields of application. For a given application and indication, the smallest possible field of view must be used. One of the major challenges in contemporary healthcare is ensuring that technological developments do not take precedence over admitted standards of care. The entire volume should be reviewed in full, with a systematic approach. All findings are noted in the patient's record and explained to the patient, including incidental findings. This presupposes the person reviewing the images is sufficiently trained to interpret such images, inform the patient and organize the clinical pathway, with referrals to other medical or oral medicine specialties as needed. CONCLUSION: A close collaboration between dentists, medical physicists, radiologists, radiographers and engineers is critical for all aspects of CBCT technology.

O modelo de cuidado centrado no paciente: o caso de um hospital geral de grande porte de Belo Horizonte/MG / The patient-centered care model: the case of a large general hospital in Belo Horizonte/MG

O cuidado centrado no paciente é um dos seis atributos da qualidade em saúde estabelecidos pelo Institute of Medicine (IOM), dos Estados Unidos, em 2001. Neste novo modelo, o foco do cuidado passa a ser o paciente, que deve ser ativamente informado, para participar das decisões sobre seu tratamento. O objetivo geral deste trabalho consiste em analisar as contribuições da implantação do modelo de cuidado centrado no paciente para a qualidade do serviço prestado do Hospital Gama. Os objetivos específicos são: descrever o processo de implantação do modelo cuidado centrado no paciente no hospital; analisar a capacidade da equipe profissional de prestar o cuidado centrado no paciente, por meio da autoavaliação de suas competências; e analisar a experiência do cuidado centrado na perspectiva do paciente. O método de investigação escolhido foi o estudo de caso, com o uso de técnicas quantitativas e qualitativas para a coleta e a análise dos dados. Na parte quantitativa, os dados foram coletados por meio de dois instrumentos estruturados com escala tipo Likert: o instrumento cuidado no diálogo ­ escala de competências, aplicado aos profissionais de saúde (equipe multidisciplinar) com mais de seis meses de contratação; e o instrumento questionário Cuidado Centrado no Paciente, aplicado aos pacientes adultos ou acompanhantes. Ambos passaram pelas etapas de tradução, avaliação por painel de especialista, retrotradução, simplificação e validação. Responderam ao questionário 143 pacientes/acompanhantes e 148 profissionais de saúde. Foram realizadas entrevistas semiestruturada com 9 profissionais de saúde do Hospital Gama. Os dados dos questionários foram submetidos a análise estatística, que incluiu: Average Variance Extracted (AVE), alfa de Cronbach e confiabilidade composta. Já na parte qualitativa realizaram-se entrevistas semiestruturadas com técnicos de enfermagem, enfermeiros, supervisores de enfermagem, coordenador médico, coordenador de enfermagem e médico com cinco ou mais anos de trabalho na instituição. A técnica de seleção foi aleatória e não probabilística, resultante da disponibilidade de participar do estudo. O critério de encerramento da coleta de dados foi o de saturação teórica, com término de inclusão de novos sujeitos quando os dados obtidos passaram a apresentar redundância, na avaliação do pesquisador, permitindo inferir a necessidade de dados relevantes para prosseguir com a coleta de dados. O roteiro de entrevistas contemplou perguntas baseadas no modelo cuidado centrado, benefícios, desafios e dificuldades, sendo direcionado para obter informações que relacionaram algumas questões do questionário, na percepção dos sujeitos. O estudo mostrou que o paciente percebe este modelo no atendimento e que se sente fazendo parte do cuidado. Apurou-se que os profissionais de saúde foram mais críticos em sua autoavaliação, considerando que a implantação do modelo centrado no paciente ainda está em andamento, que existem algumas dificuldades na transição de modelo. E também que a comunicação efetiva e a gestão compartilhada para a tomada de decisões junto com o cliente ainda representam uma dificuldade a ser trabalhada na perspectiva dos profissionais de saúde. As contribuições da implantação do modelo de cuidado centrado foram: a organização dos processos: coesão da equipe; melhoria do atendimento assistencial; e desenvolvimento de uma cultura organizacional mais humanizada. Conclui-se que a transição para o modelo cuidado centrado no paciente requer transformações da cultura organizacional, à medida que se trata de um processo longo e gradual, que demanda esforços sistemáticos e concentrados. Os produtos técnicos gerados por esta pesquisa foram dois questionários estatisticamente validados, que serão adotados pela organização em estudo, podendo servir como um benchmarking para outros hospitais da rede, e outro como instrumento de avaliação periódica da evolução da implantação do modelo cuidado centrado na perspectiva do paciente/cliente, bem como das competências desenvolvidas pelos profissionais de saúde para o diálogo no cuidado centrado. Outro produto é um relatório técnico, a ser entregue à Diretoria contendo as ações empregadas até agora para a implantação do novo modelo, devidamente avaliadas, e sugestões de aperfeiçoamento.

Patient centered care is one of the six attributes of health quality established by the Institute of Medicine (IOM), in the United States, in 2001. In this new model, the focus of care becomes the patient, who must be actively informed, to participate in decisions abou t your treatment. The general objective of this work is to analyze the contributions of the implementation of the patient centered care model to the quality of the service provided at Hospital Gama. The specific objectives are: to describe the process of i mplementing the patientcentered care model in the hospital; analyze the capacity of the professional team to provide patient through self-- centered care, assessment of their skills; and to analyze the experience of care centered on the patient's perspectiv e. The investigation method chosen was the case study, using quantitative and qualitative techniques for data collection and analysis. In quantitative terms, data were collected using two structured instruments with a Likert scale: the instrument taken car e of in the dialogue skills scale, applied to health professionals (multidisciplinary team) with more than six months of contracting; and the PatientCentered Care questionnaire instrument, applied to adult patients or companions. Both went through the s specialist panel, backtages of translation, evaluation by a translation, simplification and validation. 143 patients / companions and 148 health professionals answered the questionnaire. Semistructured interviews were conducted with 9 health professional s at Hospital Gama. The questionnaire data were subjected to statistical analysis, which included: Average Variance Extracted (AVE), Cronbach's alpha and composite reliability. In the qualitative part, semistructured interviews were carried out with nursi ng technicians, nurses, nursing supervisors, medical coordinator, nursing coordinator and physician with five or more years of work at the institution. The selection technique was random and not probabilistic, resulting from the availability to participate in the study. The criterion for terminating data collection was theoretical saturation, with the end of inclusion of new subjects when the data obtained started to show redundancy, in the researcher's assessment, allowing to infer the need for relevant da ta to proceed with data collection. The interview script included questions based on the centered care model, benefits, challenges and difficulties, being directed to obtain information that related some questions in the questionnaire, in the subjects' per ception. The study showed that the patient perceives this model in care and that he feels he is part of the care. It was found that health professionals were more critical in their selfassessment, considering that the implementation of the patientcentere d model is still in progress, that there are some difficulties in the model transition. And also that effective communication and shared management for making decisions together with the client still represent a difficulty to be worked on from the perspect ive of health professionals. The contributions of the implementation of the centered care model were: the organization of processes: team cohesion; improvement of assistance assistance; and development of a more humanized organizational culture. It is conc luded that the transition to the patientcentered care model requires changes in the organizational culture, as it is a long and gradual process, which requires systematic and concentrated efforts. The technical products generated by this research were two statistically validated questionnaires, which will be adopted by the organization under study, which can serve as a benchmarking for other hospitals in the network, and another as an instrument for periodic assessment of the evolution of the implementatio n of the care model centered on the perspective of the patient / client, as well as the skills developed by health professionals for dialogue in centered care. Another product is a technical report, to be delivered to the Board containing the actions used so far for the implementation of the new model, duly evaluated, and suggestions for improvement.

Ethical Issues of Social Media Usage in Healthcare.

OBJECTIVE: Social media, web and mobile technologies are increasingly used in healthcare and directly support patientcentered care. Patients benefit from disease self-management tools, contact to others, and closer monitoring. Researchers study drug efficiency, or recruit patients for clinical studies via these technologies. However, low communication barriers in socialmedia, limited privacy and security issues lead to problems from an ethical perspective. This paper summarizes the ethical issues to be considered when social media is exploited in healthcare contexts. METHODS: Starting from our experiences in social-media research, we collected ethical issues for selected social-media use cases in the context of patient-centered care. Results were enriched by collecting and analyzing relevant literature and were discussed and interpreted by members of the IMIA Social Media Working Group. RESULTS: Most relevant issues in social-media applications are confidence and privacy that need to be carefully preserved. The patient-physician relationship can suffer from the new information gain on both sides since private information of both healthcare provider and consumer may be accessible through the Internet. Physicians need to ensure they keep the borders between private and professional intact. Beyond, preserving patient anonymity when citing Internet content is crucial for research studies. CONCLUSION: Exploiting medical social-media in healthcare applications requires a careful reflection of roles and responsibilities. Availability of data and information can be useful in many settings, but the abuse of data needs to be prevented. Preserving privacy and confidentiality of online users is a main issue, as well as providing means for patients or Internet users to express concerns on data usage.

Telltale signs of patient-centered diagnosis.

A best-selling book from the mid-1980s was entitled, All I Really Need to Know I Learned in Kindergarten. Some doctors may similarly feel that well-worn epigrams from Hippocrates, Osler and others have told them all they really need to know about patient-centered care. The problem is that aphorisms and action are not one and the same. The workup for patient-centered diagnosis takes work, and there are telltale signs along the way. Effective patient engagement requires training and practice. It means incorporating patient-generated data into the diagnostic process. And it means being sensitive to new economic constraints on patients. Ensuring that diagnostic processes and decisions meet the test of patient-centeredness poses a challenge. The new criteria do not replace the professional obligation of beneficence; rather they add an additional obligation of power sharing. While that is neither simple nor easy, it promises better care for patients, a more satisfying clinical encounter and a better health care system for all.