NIH to build a detailed map of cells within the human body

The National Institutes of Health’s Human BioMolecular Atlas Program (HuBMAP) issued its first set of research funding awards to develop an open, global framework that will support research community efforts to map the adult human body at the level of individual cells. HuBMAP is a program of the NIH Common Fund. Common Fund programs address emerging scientific opportunities and high-priority challenges for the NIH. The HuBMAP awards total $54 million over the next four years, pending available funds.

The full press release can be viewed at this link.  

Enhancing Rural Population Health Care Access and Outcomes Through the Telehealth EcoSystem™ Model

The article highlights the Telehealth EcoSystem™ model, a holistic cross-sector approach for socioeconomic revitalization, connectivity, interoperability and technology infrastructure development to address health equity for rural underserved communities. Two guiding frameworks, Community & Economic Development (CED) and Collective Impact, provided the foundation for the Telehealth EcoSystem™ model. Public and private organizational capacities are addressed by comprehensive healthcare and social service delivery through stakeholder engagement and collaborative decision-making processes. A focus is maintained on economic recovery and policy reforms that enhance population health outcomes for individuals and families who have economic challenges. The Telehealth EcoSystem™ utilizes an intranet mechanism that enables a range of technologies and electronic devices for health informatics and telemedicine initiatives. The relevance of the intranet to the advancement of health informatics is highlighted. Best practices in digital connectivity, HIPAA requirements, electronic health records (EHRs), and eHealth applications, such as patient portals and mobile devices, are emphasized. Collateral considerations include technology applications that expand public health services. The ongoing collaboration between a social science research corporation, a regional community foundation and an open access telecommunications carrier is a pivotal element in the sequential development and implementation of the Telehealth EcoSystem™ model in the rural southeastern region community.

The full article can be viewed below.  

Global status report on alcohol and health 2018

The World Health Organization has released a comprehensive report on alcohol, examining topics such as reducing the harmful use of alcohol, global strategies action plans and monitoring frameworks, alcohol consumption, health consequences, alcohol policy and interventions, and country profiles.

The full report can be downloaded below.  

Determinants of patient participation for safer care: A qualitative study of physicians' experiences and perceptions

There is a paucity of research on physicians' perspectives on involving patients to achieve safer care. This study aims to explore determinants of patient participation
for safer care, according to physicians in Swedish health care. We used a deductive descriptive design, applying qualitative content analysis based on the Capability‐Opportunity‐Motivation‐Behaviour framework. Semi‐ structured interviews were conducted with 13 physicians in different types of health care units, to achieve a heterogeneous sample. The main outcome measure was barriers and facilitators to patient participation of potential relevance for patient safety. Analysis of the data yielded 14 determinants (ie, subcategories) functioning as barriers and/or facilitators to patient participation of potential relevance for patient safety. These determinants were mapped to five categories: physicians' capability to involve patients in their care; patients' capability to become involved in their care, as perceived by the physicians; physicians' opportunity to achieve patient participation in their care; physicians' motivation to involve patients in their care; and patients' motivation to become involved in their care, as perceived by the physicians. There are many barriers to patient participation to achieve safer care. There are also facilitators, but these tend to depend on initiatives of individual physicians and patients, because organizational‐level support may be lacking. Many of the determinants are interdependent, with physicians' perceived time constraints influencing other barriers.

The full article can be viewed below.  

Chronic Pain Among Suicide Decedents, 2003 to 2014: Findings From the National Violent Death Reporting System

More than 25 million adults in the United States have chronic pain. Chronic pain has been associated with suicidality, but previous studies primarily examined nonfatal suicidal behaviors rather than suicide deaths associated with chronic pain or the characteristics of such deaths.  The design utilized retrospective analysis of National Violent Death Reporting System (NVDRS) data. The NVDRS links death certificate, coroner or medical examiner, and law enforcement data collected by investigators, who often interview informants who knew the decedent to gather information on precipitating circumstances surrounding the suicide.  Information is abstracted by using standard coding guidance developed by the Centers for Disease Control and Prevention.  Chronic pain may be an important contributor to suicide. Access to quality, comprehensive pain care and adherence to clinical guidelines may help improve pain management and patient safety.

The full article can be viewed below.  

Strategies to promote public engagement around deprescribing

Many seniors remain unaware that certain medications may be harmful, despite high rates of polypharmacy and inappropriate medication use among community-dwelling older adults. Patient education is an effective method for reducing the use of inappropriate medications. Increasing public awareness and engagement is essential for promoting shared decision-making to deprescribe. The Canadian Deprescribing Network was created to address the lack of a systematic pan-Canadian initiative to implement deprescribing among older Canadians. The Canadian Deprescribing Network deliberately included patient advocates in its organization from the outset, in order to ensure a key strategic focus on public awareness and education. In this paper, we present the processes and activities rolled out by the Canadian Deprescribing Network as a blueprint model for engaging the public on deprescribing. Embedded within the structure of the network, the subcommittee on public awareness and engagement implements an action plan that includes needs assessments, population surveys, focus groups, deprescribing fairs, national stakeholders’ meetings, public lectures and monthly exchanges with community champions and seniors’ organizations. Educational materials and online media have been developed based on the answers to the questions: what information do seniors need about deprescribing? who should this information be delivered to? who needs to deliver the message? and how should seniors be engaged in deprescribing? In conjunction with seniors’ organizations, members of the Network have iteratively refined key deprescribing messages, disseminated information about deprescribing, engaged the press and created a grass roots-driven public awareness and education campaign across Canada. Over 3000 seniors and seniors’ organizations are involved, with over 25,000 educational tools being distributed across the country.

The full article can be viewed below.  

Ethical aspects of sudden cardiac arrest research using observational data: a narrative review

Sudden cardiac arrest (SCA) accounts for half of all cardiac deaths in Europe. In recent years, large-scale SCA registries have been set up to enable observational studies into risk factors and the effect of treatment approaches. The increasing scale and variety of data sources, coupled with the implementation of a new European data protection legal framework, causes researchers to struggle with how to handle these ‘big data’. Data protection in the SCA setting is especially complex since patients become at least temporarily incapacitated, and are thus unable to provide prospective informed consent, and because the majority of patients do not survive. A narrative review employing a systematic literature search was conducted to thematically analyse ethical aspects of noninterventional emergency medicine and critical care research. Although the identified issues may apply to a wider patient population, we describe them within the context of SCA research. Potential harms were found to include: privacy breaches, genetic discrimination and issues associated with the disclosure of individual findings, study design and application of research results. Measures proposed to mitigate harms were: alternative informed consent models including deferred or waived consent and data governance approaches promoting data security, responsible sharing and public engagement. The themes identified in this study may serve as a basis for a much-needed ethical framework regarding research with data from patients with acute and critical illness such as SCA.

The full review can be downloaded below.  

Research on Hybrid Information Evaluation Type Watching Technology for the Improvement of QOL of the Elderly

The increase in living alone and old households due to aging of the society has led to a decline in the quality of life (QOL) of elderly people. How to maintain and improve the quality of life for elderly people is a pressing issue of society. We watch over the elderly from both aspects of health-related QOL and subjective QOL and work on creating a social system that realizes a safe and secure life for the elderly. In this research, we promote the health information database which holds health related information in the shared database system such as the cloud by the will of the person him/herself, and develop a method for mining various kinds of life log information and medical/care related information in a hybrid manner. In this paper, we propose a remote watching method inferring resident's behavior related to the operation of electric appliances from the measurement of total load current of the household. We also attempt to perform hybrid data mining by combining subjective mood data and objective data with wearable sensors that can collect biological data. We aim to provide a system that brings a safe and secure life to the elderly by carrying out assessment and early detection of abnormal symptoms of them such as depression and dementia.

The full study can be downloaded below.  

An optimized prediction framework to assess the functional impact of pharmacogenetic variants

Prediction of phenotypic consequences of mutations constitutes an important aspect of precision medicine. Current computational tools mostly rely on evolutionary conservation and have been calibrated on variants associated with disease, which poses conceptual problems for assessment of variants in poorly conserved pharmacogenes. Here, we evaluated the performance of 18 current functionality prediction methods leveraging experimental high-quality activity data from 337 variants in genes involved in drug metabolism and transport and found that these models only achieved probabilities of 0.1– 50.6% to make informed conclusions. We therefore developed a functionality prediction framework optimized for pharmacogenetic assessments that significantly outperformed current algorithms. Our model achieved 93% for both sensitivity and specificity for both loss-of-function and functionally neutral variants, and we confirmed its superior performance using cross validation analyses. This novel model holds promise to improve the translation of personal genetic information into biological conclusions and pharmacogenetic recommendations, thereby facilitating the implementation of Next-Generation Sequencing data into clinical diagnostics.

The full article can be downloaded below.  

Connecting Healthcare and Clinical Research: Workflow optimizations through seamless integration of EHR, pseudonymization services and EDC systems

In hospitals usually several systems are used which are often disconnected and an integrated workflow over system borders is often not supported. Frequent system changes, different authentications and error-prone transfer of relevant data are the consequence. We proposed a concept for seamless integration of a pseudonymization workflow into the domains of routine care and clinical research. Therefore, interfaces were established between EHR and EDC system with direct integration of a pseudonymization service. This integration facilitates the automatic registration of patients from the EHR and led to a significant reduction of execution time and elimination of transcription errors.

This accepted manuscript can be downloaded below.