Leveraging natural history biorepositories as a global, decentralized, pathogen surveillance network.

The Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2) pandemic reveals a major gap in global biosecurity infrastructure: a lack of publicly available biological samples representative across space, time, and taxonomic diversity. The shortfall, in this case for vertebrates, prevents accurate and rapid identification and monitoring of emerging pathogens and their reservoir host(s) and precludes extended investigation of ecological, evolutionary, and environmental associations that lead to human infection or spillover. Natural history museum biorepositories form the backbone of a critically needed, decentralized, global network for zoonotic pathogen surveillance, yet this infrastructure remains marginally developed, underutilized, underfunded, and disconnected from public health initiatives. Proactive detection and mitigation for emerging infectious diseases (EIDs) requires expanded biodiversity infrastructure and training (particularly in biodiverse and lower income countries) and new communication pipelines that connect biorepositories and biomedical communities. To this end, we highlight a novel adaptation of Project ECHO's virtual community of practice model: Museums and Emerging Pathogens in the Americas (MEPA). MEPA is a virtual network aimed at fostering communication, coordination, and collaborative problem-solving among pathogen researchers, public health officials, and biorepositories in the Americas. MEPA now acts as a model of effective international, interdisciplinary collaboration that can and should be replicated in other biodiversity hotspots. We encourage deposition of wildlife specimens and associated data with public biorepositories, regardless of original collection purpose, and urge biorepositories to embrace new specimen sources, types, and uses to maximize strategic growth and utility for EID research. Taxonomically, geographically, and temporally deep biorepository archives serve as the foundation of a proactive and increasingly predictive approach to zoonotic spillover, risk assessment, and threat mitigation.

Management of sarcomas in children, adolescents and adults: Interactions in two different age groups under the umbrellas of GSF-GETO and SFCE, with the support of the NETSARC+ network.

Sarcomas are a rare heterogeneous group of malignant neoplasms that can arise in almost any anatomic site and any age. Close collaboration among adult and pediatric cancer specialists in the management of these tumors is of foremost importance. In this review, we present the current multidisciplinary organization in care of patients with sarcoma in France and we review the main advances made in the last decades in systemic and radiotherapy treatment in the main sarcoma types diagnosed in children, adolescents and young adults (AYA), thanks to the international collaboration.

[Regional cancers networks, collaborative work in adults and pediatricians]. / Réseaux régionaux en cancérologie, collaboration équipes adulte et pédiatrique.

Regional cancer networks missions have been defined by successive "Plan Cancer" and are focused on coordination and the safety and quality of care. Regional pediatric oncology networks, considering the specific care pathways, have these same coordination missions. The examples of partnership of the oncoped-PL (Pays de Loire) and oncomip (Occitanie) networks are successful collaboration models.

Breadth and Exclusivity of Hospital and Physician Networks in US Insurance Markets.

Importance: Little is known about the breadth of health care networks or the degree to which different insurers' networks overlap. Objective: To quantify network breadth and exclusivity (ie, overlap) among primary care physician (PCP), cardiology, and general acute care hospital networks for employer-based (large group and small group), individually purchased (marketplace), Medicare Advantage (MA), and Medicaid managed care (MMC) plans. Design, Setting, and Participants: This cross-sectional study included 1192 networks from Vericred. The analytic unit was the network-zip code-clinician type-market, which captured attributes of networks from the perspective of a hypothetical patient seeking access to in-network clinicians or hospitals within a 60-minute drive. Exposures: Enrollment in a private insurance plan. Main Outcomes and Measures: Percentage of in-network physicians and/or hospitals within a 60-minute drive from a hypothetical patient in a given zip code (breadth). Number of physicians and/or hospitals within each network that overlapped with other insurers' networks, expressed as a percentage of the total possible number of shared connections (exclusivity). Descriptive statistics (mean, quantiles) were produced overall and by network breadth category, as follows: extra-small (<10%), small (10%-25%), medium (25%-40%), large (40%-60%), and extra-large (>60%). Networks were analyzed by insurance type, state, and insurance, physician, and/or hospital market concentration level, as measured by the Hirschman-Herfindahl index. Results: Across all US zip code-network observations, 415 549 of 511 143 large-group PCP networks (81%) were large or extra-large compared with 138 485 of 202 702 MA (68%), 191 918 of 318 082 small-group (60%), 60 425 of 149 841 marketplace (40%), and 21 781 of 66 370 MMC (40%) networks. Large-group employer networks had broader coverage than all other network plans (mean [SD] PCP breadth: large-group employer-based plans, 57.3% [20.1]; small-group employer-based plans, 45.7% [21.4]; marketplace, 36,4% [21.2]; MMC, 32.3% [19.3]; MA, 47.4% [18.3]). MMC networks were the least exclusive (a mean [SD] overlap of 61.3% [10.5] for PCPs, 66.5% [9.8] for cardiology, and 60.2% [12.3] for hospitals). Networks were narrowest (mean [SD] breadth 42.4% [16.9]) and most exclusive (mean [SD] overlap 47.7% [23.0]) in California and broadest (79.9% [16.6]) and least exclusive (71.1% [14.6]) in Nebraska. Rising levels of insurer and market concentration were associated with broader and less exclusive networks. Markets with concentrated primary care and insurance markets had the broadest (median [interquartile range {IQR}], 75.0% [60.0%-83.1%]) and least exclusive (median [IQR], 63.7% [52.4%-73.7%]) primary care networks among large-group commercial plans, while markets with least concentration had the narrowest (median [IQR], 54.6% [46.8%-67.6%]) and most exclusive (median [IQR], 49.4% [41.9%-56.9%]) networks. Conclusions and Relevance: In this study, narrower health care networks had a relatively large degree of overlap with other networks in the same geographic area, while broader networks were associated with physician, hospital, and insurance market concentration. These results suggest that many patients could switch to a lower-cost, narrow network plan without losing in-network access to their PCP, although future research is needed to assess the implications for care quality and clinical integration across in-network health care professionals and facilities in narrow network plans.

Dementia care and research - What a difference a decade makes?

Dementia care currently costs the UK 21 bn pounds a year, and that doesn't include the huge informal costs of family careers and community support networks. Developing services to meet the needs of patients with complex health problems must involve service users. Professor Robinson has addressed what resources are needed to provide a better quality of care, and how these can be successfully delivered to patients and their family. As Newcastle University's Professor of Primary Care and Ageing, and as a working GP in a Newcastle practice, she is keen to ensure that the benefits of the University's excellent research into ageing and the diseases of old age are translated into high quality treatment and care for older people. She leads the Primary Care Group of the Dementia and Neurodegenerative Diseases Research Network (DeNDRoN), a national network of researchers which aims to explore the whole spectrum of dementia care from diagnosis and early detection, through to advanced dementia and end of life care. Another Professor Robinson's ambitions would be to help create a center of excellence at Newcastle University for training GPs, hospital staff, community nurses and others in all aspects of dementia care. In this lecture, Prof Robinson will talk about how her translational research had influenced UK practice over the last 10+ years and at same time bring in her career development in both clinical and academic field.(Presented at the 1982th Meeting, June 25, 2019).

Personal Disaster and Emergency Support Networks of Older Adults in a Rural Community: Changes After Participation in a Preparedness Program.

OBJECTIVE: Personal disaster and emergency support networks of rural older adults are described before and after participation in a disaster preparedness intervention, PrepWise. METHODS: At baseline, a total of 194 disaster support network members were identified by 27 older adults in a rural Midwest community. After the intervention, these participants identified 232 support network members. Multilevel logistic regression models were constructed to identify characteristics of the network members and social interactions associated with support providers at baseline as well as newly added support sources after the PrepWise intervention. RESULTS: Member and interaction characteristics associated with being identified as emergency support sources at baseline were as follows: family, lived in close proximity, weekly or more frequent contact, and being someone whom participants shared concerns with, trusted, and exchanged emotional support with. After receiving PrepWise, participants on average identified 3 new sources of emergency support within their networks. Support sources added at follow-up tended to be nonfamily members and those participants trusted. CONCLUSIONS: Enhancements in personal emergency support networks occurred after the intervention. Understanding characteristics of the network members and social interactions may assist in identifying additional emergency support sources. Larger studies investigating the impacts of enhanced support networks on disaster-related behaviors and outcomes will be beneficial. (Disaster Med Public Health Preparedness. 2017;11:110-119).

Creating Community Resilience Through Elder-Led Physical and Social Infrastructure.

OBJECTIVE: Natural disasters and rapidly aging populations are chronic problems for societies worldwide. We investigated the effects of an intervention in Japan known as Ibasho, which embeds elderly residents in vulnerable areas within larger social networks and encourages them to participate in leadership activities. This project sought to deepen the connections of these elderly residents to society and to build elderly leadership and community capacity for future crises. METHODS: We carried out surveys of participants and nonparticipant residents across the city of Ofunato in Tohoku, Japan, 1 year after the intervention began. Our surveys included questions assessing participation levels in Ibasho, demographic characteristics, efficacy, social networks, and a sense of belonging. RESULTS: Regression analysis and propensity score matching of more than 1100 respondents showed that regular participation in the Ibasho project had a statistically significant and positive connection with various measures of social capital. CONCLUSIONS: Given its relatively low cost and focus on deepening cohesion, we suggest that this community-based project could be replicated and scaled up in other countries to deepen resilience, elder health, and social capital. Moving away from an emphasis on investing in physical infrastructure, we believe that disaster risk reduction strategies should center on social infrastructure. (Disaster Med Public Health Preparedness. 2017;11:120-126).

Using a supportive care framework to understand and improve palliative care among cancer patients in Africa.

OBJECTIVE: Cancer incidence and mortality are increasing in Africa, which is leading to greater demands for palliative care. There has been little progress in terms of research, pain management, and policies related to palliative care. Palliative care in Africa is scarce and scattered, with most African nations lacking the basic services. To address these needs, a guiding framework that identifies care needs and directs palliative care services could be utilized. Therefore, using the supportive care framework developed by Fitch (Fitch, 2009), we here review the literature on palliative care for patients diagnosed with cancer in Africa and make recommendations for improvement. METHOD: The PubMed, Scopus, CINAHL, Web of Science, Embase, PsycINFO, Social Sciences Citation Index, and Medline databases were searched. Some 25 English articles on research from African countries published between 2004 and 2014 were selected and reviewed. The reviewed literature was analyzed and presented using the domains of the supportive care framework. RESULTS: Palliative care patients with cancer in Africa, their families, and caregivers experience increasing psychological, physical, social, spiritual, emotional, informational, and practical needs. Care needs are often inadequately addressed because of a lack of awareness as well as deficient and scattered palliative care services and resources. In addition, there is sparse research, education, and policies that address the dire situation in palliative care. SIGNIFICANCE OF RESULTS: Our review findings add to the existing body of knowledge demonstrating that palliative care patients with cancer in Africa experience disturbing care needs in all domains of the supportive care framework. To better assess and address these needs, holistic palliative care that is multidomain and multi-professional could be utilized. This approach needs to be individualized and to offer better access to services and information. In addition, research, education, and policies around palliative care for cancer patients in Africa could be more comprehensive if they were based on the domains of the supportive care framework.

Networking Ethics: A Survey of Bioethics Networks Across the U.S.

Ethics networks have emerged over the last few decades as a mechanism for individuals and institutions over various regions, cities and states to converge on healthcare-related ethical issues. However, little is known about the development and nature of such networks. In an effort to fill the gap in the knowledge about such networks, a survey was conducted that evaluated the organizational structure, missions and functions, as well as the outcomes/products of ethics networks across the country. Eighteen established bioethics networks were identified via consensus of three search processes and were approached for participation. The participants completed a survey developed for the purposes of this study and distributed via SurveyMonkey. Responses were obtained from 10 of the 18 identified and approached networks regarding topic areas of: Network Composition and Catchment Areas; Network Funding and Expenses; Personnel; Services; and Missions and Accomplishments. Bioethics networks are designed primarily to bring ethics education and support to professionals and hospitals. They do so over specifically defined areas-states, regions, or communities-and each is concerned about how to stay financially healthy. At the same time, the networks work off different organizational models, either as stand-alone organizations or as entities within existing organizational structures.

Bad on the net, or bipolars' lives on the web: analyzing discussion web pages for individuals with bipolar affective disorder.

OBJECTIVE: The main therapeutic approach in the treatment of bipolar affective disorder is the administration of drugs. The effectiveness of this approach can be increased by specific psychotherapeutic interventions. There is not much knowledge about self-help initiatives in this field. Anonymous internet communication may be beneficial, regardless of the fact that it is non-professional. It offers a chance to confide and share symptoms with other patients, to open up for persons with feelings of shame, and to obtain relevant information without having a direct contact with an expert. METHODS: Qualitative analysis of web discussions used by patients with bipolar disorder in Czech language was performed. Using key words "diskuze" (discussion), "maniodeprese" (manic depression) and "bipolární porucha" (bipolar disorder), 8 discussions were found, but only 3 of them were anonymous and non-professional. Individual discussion entries were analyzed for basic categories or subcategories, and these were subsequently assessed so that their relationships could be better understood. RESULTS: A total of 436 entries from 3 discussion web pages were analyzed. Subsequently, six categories were identified (participant, diagnosis, relationships, communication, topic and treatment), each having 5-12 subcategories. These were analyzed in terms of relationships and patterns. CONCLUSIONS: Czech discussion web pages for people suffering from bipolar disorder are a lively community of users supporting each other, that may be characterized as a compact body open to newcomers. They seem to fulfill patients' needs that are not fully met by health care services. It also has a "self-cleaning" ability, effectively dealing with posts that are inappropriate, provocative, criticizing, aggressive or meaningless.

Community-based system, reports, and substantiated cases of elder abuse: disparities between municipalities and relating factors in Japan.

This study examines (1) the staffing and financial characteristics of systems for elder abuse detection and intervention in the municipal governments of Japan and (2) the relationship among the development of detection and intervention systems, the reporting rates of suspected elder abuse cases, and substantiated abuse rates in 927 municipalities across Japan. Progressive systems for the detection and intervention of elder abuse were significantly associated with a larger number of public officers than in non-progressive systems. Furthermore, greater rates of both suspected and substantiated cases of abuse were associated with progressive systems for elder abuse detection and intervention. Per capita annual expenditures on the comprehensive support project and the community general support center's catchment under the Long-Term Care Insurance (LTCI) program showed no significant association with the development of systems, the rate of suspected cases, or the number of substantiated cases. National social policy makers should examine strategies that would help municipalities assign sufficient staff to elder abuse detection and intervention programs.

The T1D Exchange clinic registry.

CONTEXT: The T1D Exchange includes a clinic-based registry, a patient-centric web site called Glu, and a biobank. OBJECTIVE: The aim of the study was to describe the T1D Exchange clinic registry and provide an overview of participant characteristics. DESIGN: Data obtained through participant completion of a questionnaire and chart extraction include diabetes history, management, and monitoring; general health; lifestyle; family history; socioeconomic factors; medications; acute and chronic diabetic complications; other medical conditions; and laboratory results. SETTING: Data were collected from 67 endocrinology centers throughout the United States. PATIENTS: We studied 25,833 adults and children with presumed autoimmune type 1 diabetes (T1D). RESULTS: Participants ranged in age from less than 1 to 93 yr, 50% were female, 82% were Caucasian, 50% used an insulin pump, 6% used continuous glucose monitoring, and 16% had a first-degree family member with T1D. Glycosylated hemoglobin at enrollment averaged 8.3% and was highest in 13 to 25 yr olds. The prevalence of renal disease was ≤4% until T1D was present for at least 10 yr, and retinopathy treatment was ≤2% until T1D was present for at least 20 yr. A severe hypoglycemic event (seizure or coma) in the prior 12 months was reported by 7% of participants and diabetic ketoacidosis in the prior 12 months by 8%. CONCLUSIONS: The T1D Exchange clinic registry provides a database of important information on individuals with T1D in the United States. The rich dataset of the registry provides an opportunity to address numerous issues of relevance to clinicians and patients, including assessments of associations between patient characteristics and diabetes management factors with outcomes.

Geographic access to and availability of community resources for persons diagnosed with severe mental illness in Philadelphia, USA.

This study assesses whether there are differences in geographic access to and availability of a range of different amenities for a large group of persons diagnosed with severe mental illness (SMI) in Philadelphia (USA) when compared to a more general set of residential addresses. The 15,246 persons who comprised the study group had better outcomes than an equal number of geographical points representative of the general Philadelphia population on measures of geographic proximity and availability for resources considered important by people diagnosed with SMI. These findings provide support for the presence of geographic prerequisites for attaining meaningful levels of community integration.

[Networks of care for ST-elevation myocardial infarction in Italy. Results of the RETE IMA WEB survey]. / La rete per il trattamento dell'infarto miocardico acuto con sopraslivellamento del tratto ST in Italia. Risultati della rilevazione RETE IMA WEB.

BACKGROUND: The organization of a regional system of care (RSC) for ST-elevation myocardial infarction (STEMI) is recommended by the Italian Federation of Cardiology (FIC) and international guidelines in order to increase the number of patients treated with primary coronary angioplasty and, more in general, with reperfusion therapy, speed up the diagnostic and therapeutic processes, and ultimately improve the outcome. METHODS: The "RETE IMA WEB" survey was launched in 2007 from the Italian Society of Invasive Cardiology (SICI-GISE) in collaboration with the FIC, with the aim of evaluating the current state of RSC for STEMI in Italy. The personnel of the 118 Emergency System participated in the survey. Data collection was made using different electronic forms with access limited by personal passwords. We assessed the organization of the RSC together with local resource availability, with specific attention to the distance from a Hub center. RESULTS: The survey ended in December 31, 2008. We censored 701 hospitals admitting STEMI patients, 157 (22.4%) with uninterrupted access (h24/7 days) to the catheterization laboratory (2.67 per million inhabitants). An operative network was present in 36/103 (35.9%) provinces, with important geographic variability. Among hospitals without a full-time primary angioplasty facility, only 46% was within a RSC. ECG was available in 72% of the national territory, telemedicine in 50%. Prehospital fibrinolysis was available in 16% of the country. Overall, 92.4% of the Italian population resides within 60 min of a Hub center. CONCLUSIONS: In 2008, despite an adequate framework, the RSC for STEMI in Italy was heterogeneous and still suboptimal. Healthcare administrators, scientific societies and all operators involved in the process of care for STEMI should make efforts to implement current guidelines.

The development of a network for community-based obesity prevention: the CO-OPS Collaboration.

BACKGROUND: Community-based interventions are a promising approach and an important component of a comprehensive response to obesity. In this paper we describe the Collaboration of COmmunity-based Obesity Prevention Sites (CO-OPS Collaboration) in Australia as an example of a collaborative network to enhance the quality and quantity of obesity prevention action at the community level. The core aims of the CO-OPS Collaboration are to: identify and analyse the lessons learned from a range of community-based initiatives aimed at tackling obesity, and; to identify the elements that make community-based obesity prevention initiatives successful and share the knowledge gained with other communities. METHODS: Key activities of the collaboration to date have included the development of a set of Best Practice Principles and knowledge translation and exchange activities to promote the application (or use) of evidence, evaluation and analysis in practice. RESULTS: The establishment of the CO-OPS Collaboration is a significant step toward strengthening action in this area, by bringing together research, practice and policy expertise to promote best practice, high quality evaluation and knowledge translation and exchange. Future development of the network should include facilitation of further evidence generation and translation drawing from process, impact and outcome evaluation of existing community-based interventions. CONCLUSIONS: The lessons presented in this paper may help other networks like CO-OPS as they emerge around the globe. It is important that networks integrate with each other and share the experience of creating these networks.