The hereditary angioedema burden of illness study in Europe (HAE-BOIS-Europe) : background and methodology

Background: Hereditary angioedema (HAE) is a rare but serious disease marked by swelling attacks in the extremities, face, trunk, airway, or abdominal areas that can be spontaneous or the result of trauma and other triggers. It can be life-threatening due to the risk of asphyxiation. While there have been major advancements in our understanding of the immunogenetics of HAE, there are significant gaps in the literature regarding understanding of the humanistic and economic impact of the disease, particularly in Europe. The purpose of the HAE Burden of Illness Study-Europe (HAE-BOIS-Europe), the development and methodology of which is described here, is to better understand the management and impact of HAE from the patient perspective in Europe. Methods/Design: This is a cross-sectional study in which retrospective data were also collected being conducted in Denmark, Germany and Spain. The study is open to patients ages 12 and older with a diagnosis of HAE-I or HAE-II. Data collection includes: (i) a survey on individuals’ health care resource use, direct and indirect medical costs, impact on work and school, treatment satisfaction, and emotional functioning (via the Hospital Anxiety and Depression Scale); and (ii) one-on-one interviews to collect detailed descriptive data and patient testimonials on the impact of HAE on patients’ health-related quality of life. Discussion: The present manuscript describes the development and plans for implementing a multi-country European study with the aim of characterizing the humanistic and economic burden of HAE from the patient perspective. This study will help raise awareness of HAE as a rare but debilitating condition with wide-ranging impacts

The Health Impact Fund and the Right to Participate in the Advancement of Science

Taking into consideration the extremely harsh public health conditions faced by the majority of the world population, the Health Impact Fund (HIF) proposal seeks to make the intellectual property regimes more in line with human rights obligations. While prioritizing access to medicines and research on neglected diseases, the HIF makes many compromises in order to be conceived as politically feasible and to retain a compensation character that makes its implementation justified solely on basis of negative duties. Despite that current global health realities make such steps reasonable, the paper looks up the negative effects on one overlooked human right: the right to participate in scientific advancement

The Role of the Private Sector in Training the Next Generation of Biomedical Scientists

Summarizes the proceedings of a conference to address the unique contribution that private funders can make in ensuring that appropriate and adequate training programs are available for basic and clinical research. Offers conclusions and recommendations

‘It’s got to be another approach’: an Aboriginal Health Worker perspective on cardiovascular risk screening and education

This study provides a new perspective from Aboriginal Health Workers (AHWs) working in the area of heart health in the Aboriginal community of western Sydney. Discussion AHWs are well placed and keen to be a part of the team that assesses cardiovascular risk. However, lack of recognition of the AHWs’ skills and lack of access to formal training are current barriers to enhancing their role in the heart health team. Cardiovascular disease (CVD) is a major health concern in the Aboriginal population and contributes to the significant life expectancy gap between Aboriginal and non-Aboriginal Australians. Conventional risk factors alone do not account for the excess CVD mortality, which has foundations in the economic, social, physiological, psychological and educational disadvantage of the Aboriginal population. There is a lack of progress in reducing the disparities in health outcomes between Aboriginal and non-Aboriginal Australians. This may be because of a focus, to date, on acute care and patient responsibility rather than addressing underlying determinants of health such as living conditions and socioeconomic factors. In Aboriginal communities, Aboriginal Health Workers (AHWs) fulfil a variety of roles, depending on personal interests and the needs of the community. Unfortunately, a lack of understanding of the diverse expertise of AHWs persists. A universal role is that of a cultural broker through which communication between Aboriginal people and non-Aboriginal healthcare providers are enhanced, thereby increasing the effectiveness of their interaction. Recognition of AHWs as an important part of the healthcare team has been suggested as a means of delivering improved healthcare to the Aboriginal population. The aim of this study was to study the perspectives of Aboriginal health professionals (nurses and AHWs) regarding cardiovascular risk and heart health, including their understanding of cardiovascular risk assessment. Qualitative research methods can improve the understanding of perceptions of health across cultures and lead to improved health outcomes. This study was undertaken with AHWs and Aboriginal nurses from the Aboriginal Medical Service Western Sydney (AMSWS) and Western Sydney Local Health District, all of whom are working in the area of chronic disease management or heart health. AMSWS is a large Aboriginal community controlled health organisation that provides multidisciplinary primary healthcare, including cardiovascular screening, healthy lifestyle education and case management to clients with heart disease

Brucellosis remains a neglected disease inthe developing world: a call forinterdisciplinary action

Brucellosis places significant burdens on the human healthcare system and limits the economic growth of individuals, communities, and nations where such development is especially important to diminish the prevalence of poverty. The implementation of public policy focused on mitigating the socioeconomic effects of brucellosis in human and animal populations is desperately needed. When developing a plan to mitigate the associated consequences, it is vital to consider both the abstract and quantifiable effects. This requires an interdisciplinary and collaborative, or One Health, approach that consists of public education, the development of an infrastructure for disease surveillance and reporting in both veterinary and medical fields, and campaigns for control in livestock and wildlife species

What Is New about the Exposome? Exploring Scientific Change in Contemporary Epidemiology

In this commentary, I discuss the scientific changes brought by the exposome, asking what is new about this approach and line of research. I place the exposome in a historical perspective, by analyzing the conditions under which the exposome has been conceived, developed and established in the context of contemporary epidemiological research. I argue that the exposome has been developed by transferring approaches, methods and conceptualizations from other lines of research in the life and health sciences. I thus discuss the conceptual and methodological innovations of the exposome as a result of the merging and adaptation of these elements for new uses and purposes. On this basis, I argue that the novelty of the exposome should be seen in incremental rather than revolutionary terms and, in this sense, the exposome shares significant elements with other projects and repertoires in postgenomics. I conclude by discussing the consequences of this analysis for the potential limitations and future development of exposome research

PhoneMD: Learning to Diagnose Parkinson's Disease from Smartphone Data

Parkinson's disease is a neurodegenerative disease that can affect a person's movement, speech, dexterity, and cognition. Clinicians primarily diagnose Parkinson's disease by performing a clinical assessment of symptoms. However, misdiagnoses are common. One factor that contributes to misdiagnoses is that the symptoms of Parkinson's disease may not be prominent at the time the clinical assessment is performed. Here, we present a machine-learning approach towards distinguishing between people with and without Parkinson's disease using long-term data from smartphone-based walking, voice, tapping and memory tests. We demonstrate that our attentive deep-learning models achieve significant improvements in predictive performance over strong baselines (area under the receiver operating characteristic curve = 0.85) in data from a cohort of 1853 participants. We also show that our models identify meaningful features in the input data. Our results confirm that smartphone data collected over extended periods of time could in the future potentially be used as a digital biomarker for the diagnosis of Parkinson's disease.Comment: AAAI Conference on Artificial Intelligence 201

A core curriculum for the continuing professional development of nurses: Developed by the Education Committee on behalf of the Council on Cardiovascular Nursing and Allied Professions of the ESC

Background: The European Society of Cardiology and the Council on Cardiovascular Nursing and Allied Professions share a vision; to decrease the burden of cardiovascular disease in Europe. Nurses represent the largest sector of the health professional workforce and have a significant contribution to make, which has not yet been fully realised. Recent evidence highlights an association between the level of nurse education and inpatient mortality making this an important topic, particularly as the provision of nurse education in Europe is variable. Aim: To develop a core curriculum to inform the education of nurses following initial qualification for work in cardiovascular settings. Method: A syllabus was developed using published literature, policy documents and existing curricula with expert input from service users, specialist nurses, cardiologists, educationalists and academics. The syllabus formed the framework for the development of the core curriculum. Results: Eight key themes characterise the core curriculum which are presented together with an account of the development process. While the curriculum is not intended to cover all aspects of the highly complex role of the cardiovascular nurse, the themes do exemplify the science and art of nursing and are transferable across different levels of clinical practice and settings. The curriculum functions both as a ‘map’, which identifies key themes to include in nurse education, and as a ‘tool’ to inform educational provision that bridges’ the gap between initial nurse education and advanced specialist practice. Content can be adapted for use to fit the national context and reflects the specific needs, health priorities, legislative and regulatory standards that govern safe nursing practice across different countries. Conclusion: The core curriculum can be used as a learning framework to guide nurse education, in particular the continuing professional education of post-qualifying nurses working in cardiovascular settings. This represents a significant step towards streamlining cardiovascular nurse education in Europ

Cancer Informatics for Cancer Centers (CI4CC): Building a Community Focused on Sharing Ideas and Best Practices to Improve Cancer Care and Patient Outcomes.

Cancer Informatics for Cancer Centers (CI4CC) is a grassroots, nonprofit 501c3 organization intended to provide a focused national forum for engagement of senior cancer informatics leaders, primarily aimed at academic cancer centers anywhere in the world but with a special emphasis on the 70 National Cancer Institute-funded cancer centers. Although each of the participating cancer centers is structured differently, and leaders' titles vary, we know firsthand there are similarities in both the issues we face and the solutions we achieve. As a consortium, we have initiated a dedicated listserv, an open-initiatives program, and targeted biannual face-to-face meetings. These meetings are a place to review our priorities and initiatives, providing a forum for discussion of the strategic and pragmatic issues we, as informatics leaders, individually face at our respective institutions and cancer centers. Here we provide a brief history of the CI4CC organization and meeting highlights from the latest CI4CC meeting that took place in Napa, California from October 14-16, 2019. The focus of this meeting was "intersections between informatics, data science, and population science." We conclude with a discussion on "hot topics" on the horizon for cancer informatics