Transforming Health Care in Remote Communities: report on an international conference.
Ontology highlight
ABSTRACT:
SUBMITTER: Young TK
PROVIDER: S-EPMC4989899 | biostudies-other | 2016
REPOSITORIES: biostudies-other
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Project description:There are many ways to classify ectodermal dysplasia syndromes. Clinicians in practice use a list of syndromes from which to choose a potential diagnosis, paging through a volume, such as Freire-Maia and Pinheiro's corpus, matching their patient's findings to listed syndromes. Medical researchers may want a list of syndromes that share one (monothetic system) or several (polythetic system) traits in order to focus research on a narrowly defined group. Special interest groups may want a list from which they can choose constituencies, and insurance companies and government agencies may want a list to determine for whom to provide (or deny) health-care coverage. Furthermore, various molecular biologists are now promoting classification systems based on gene mutation (e.g., TP63-associated syndromes) or common molecular pathways. The challenge will be to balance comprehensiveness within the classification with usability and accessibility so that the benefits truly serve the needs of researchers, health-care providers, and ultimately the individuals and families directly affected by ectodermal dysplasias. It is also recognized that a new classification approach is an ongoing process and will require periodical reviews or updates. Whatever scheme is developed, however, will have far-reaching application for other groups of disorders for which classification is complicated by the number of interested parties and advances in diagnostic acumen. Consensus among interested parties is necessary for optimizing communication among the diverse groups whether it be for equitable distribution of funds, correctness of diagnosis and treatment, or focusing research efforts.
| S-EPMC2756677 | biostudies-literature
Project description:The 32nd International Conference on Antiviral Research (ICAR), sponsored by the International Society for Antiviral Research (ISAR), was held in Baltimore, Maryland, USA, on May 12-15, 2019. This report gives an overview of the conference on behalf of the Society. It provides a general review of the meeting and awardees, summarizing the presentations, and their main conclusions from the perspective of researchers active in many different areas of antiviral research and development. As in past years, ICAR promoted and showcased the most recent progress in antiviral research, and continued to foster collaborations and interactions in drug discovery and development. The 33rd ICAR will be held in Seattle, Washington, USA, March 30th-April 3rd, 2020.
| S-EPMC7105345 | biostudies-literature
Project description:On November 9 and 10, 2015, the International Conference on Mesothelioma in Populations Exposed to Naturally Occurring Asbestiform Fibers was held at the University of Hawaii Cancer Center in Honolulu, Hawaii. The meeting was cosponsored by the International Association for the Study of Lung Cancer, and the agenda was designed with significant input from staff at the U.S. National Cancer Institute and National Institute of Environmental Health Sciences. A multidisciplinary group of participants presented updates reflecting a range of disciplinary perspectives, including mineralogy, geology, epidemiology, toxicology, biochemistry, molecular biology, genetics, public health, and clinical oncology. The group identified knowledge gaps that are barriers to preventing and treating malignant mesothelioma (MM) and the required next steps to address barriers. This manuscript reports the group's efforts and focus on strategies to limit risk to the population and reduce the incidence of MM. Four main topics were explored: genetic risk, environmental exposure, biomarkers, and clinical interventions. Genetics plays a critical role in MM when the disease occurs in carriers of germline BRCA1 associated protein 1 mutations. Moreover, it appears likely that, in addition to BRCA1 associated protein 1, other yet unknown genetic variants may also influence the individual risk for development of MM, especially after exposure to asbestos and related mineral fibers. MM is an almost entirely preventable malignancy as it is most often caused by exposure to commercial asbestos or mineral fibers with asbestos-like health effects, such as erionite. In the past in North America and in Europe, the most prominent source of exposure was related to occupation. Present regulations have reduced occupational exposure in these countries; however, some people continue to be exposed to previously installed asbestos in older construction and other settings. Moreover, an increasing number of people are being exposed in rural areas that contain noncommercial asbestos, erionite, and other mineral fibers in soil or rock (termed naturally occurring asbestos [NOA]) and are being developed. Public health authorities, scientists, residents, and other affected groups must work together in the areas where exposure to asbestos, including NOA, has been documented in the environment to mitigate or reduce this exposure. Although a blood biomarker validated to be effective for use in screening and identifying MM at an early stage in asbestos/NOA-exposed populations is not currently available, novel biomarkers presented at the meeting, such as high mobility group box 1 and fibulin-3, are promising. There was general agreement that current treatment for MM, which is based on surgery and standard chemotherapy, has a modest effect on the overall survival (OS), which remains dismal. Additionally, although much needed novel therapeutic approaches for MM are being developed and explored in clinical trials, there is a critical need to invest in prevention research, in which there is a great opportunity to reduce the incidence and mortality from MM.
| S-EPMC5551435 | biostudies-other
Project description:The 29th International Conference on Antiviral Research (ICAR) was held in La Jolla, CA, USA from April 17 to 21, 2016. This report opens with a tribute to the late Chris McGuigan, a Past-President of ISAR, then continues with summaries of the principal invited lectures. Doug Richman (Elion Award) investigated HIV resistance, Bob Vince (Holý Award) showed how carbocyclic nucleoside analogs led to abacavir and Jerome Deval (Prusoff Award) explained how his group chose to seek a nucleoside analog to treat RSV. ALS-8176 was active in a human RSV-challenge study and is being evaluated in children. The first keynote address, by Richard H. Scheuermann, reported on the remarkable progress made in viral genomics. The second keynote address, by Heinz Feldmann, gave an overview of Ebola virus disease. There were four mini-symposia, Structural Biology, Diagnostic Technologies, DNA viruses and Zika virus. Diagnostic assays are approaching an ideal aim, a compact instrument, simple to use with any type of sample, no sample preparation and a result within an hour. The diversity of HCMV is far greater than for other herpesviruses, typically, an individual having >20,000 single nucleotide polymorphisms (SNPs). During antiviral treatment, there is rapid CMV evolution which is presumed to be due to preferential selection of already present variants rather than by the creation of new variants. A selection of contributor presentations includes oral prodrugs for nucleoside triphosphate analogs, a new method for the synthesis of phosphoramidate prodrugs and the clinical evaluation of brincidofovir for treating transplant recipients with adenovirus infections.
| S-EPMC7113867 | biostudies-literature
Project description:On December 4th 2014, the International Centre for Reproductive Health (ICRH) at Ghent University organized an international conference on adolescent sexual and reproductive health (ASRH) and well-being. This viewpoint highlights two key messages of the conference--(1) ASRH promotion is broadening on different levels and (2) this broadening has important implications for research and interventions--that can guide this research field into the next decade. Adolescent sexuality has long been equated with risk and danger. However, throughout the presentations, it became clear that ASRH and related promotion efforts are broadening on different levels: from risk to well-being, from targeted and individual to comprehensive and structural, from knowledge transfer to innovative tools. However, indicators to measure adolescent sexuality that should accompany this broadening trend, are lacking. While public health related indicators (HIV/STIs, pregnancies) and their behavioral proxies (e.g., condom use, number of partners) are well developed and documented, there is a lack of consensus on indicators for the broader construct of adolescent sexuality, including sexual well-being and aspects of positive sexuality. Furthermore, the debate during the conference clearly indicated that experimental designs may not be the only appropriate study design to measure effectiveness of comprehensive, context-specific and long-term ASRH programmes, and that alternatives need to be identified and applied. Presenters at the conference clearly expressed the need to develop validated tools to measure different sub-constructs of adolescent sexuality and environmental factors. There was a plea to combine (quasi-)experimental effectiveness studies with evaluations of the development and implementation of ASRH promotion initiatives.
| S-EPMC4711048 | biostudies-other
Project description:IntroductionWith the growing prevalence of value-based contracts, health systems are incentivized to consider population approaches to service delivery, particularly for chronic conditions like depression. To this end, UW Medicine implemented the Depression-Population Approach to Health (PATH) program in primary care (PC) as part of a system-wide Center for Medicare and Medicaid Innovation (CMMI) quality improvement (QI) initiative.AimTo examine the feasibility of a pilot PATH program and its impact on clinical and process-of-care outcomes.SettingA large, diverse, geographically disparate academic health system in Western Washington State including 28 PC clinics across five networks.Program descriptionThe PATH program was a population-level, centralized, measurement-based care intervention that utilized a clinician to provide remote monitoring of treatment progress via chart review and facilitate patient engagement when appropriate. The primary goals of the program were to improve care engagement and increase follow-up PHQ-9 assessments for patients with depression and elevated initial PHQ-9 scores.Program evaluationWe employed a prospective, observational study design, including commercially insured adult patients with new depression diagnoses and elevated initial PHQ-9 scores. The pilot intervention group, consisting of accountable care network (ACN) self-enrollees (N = 262), was compared with a similar commercially insured cohort (N = 2527) using difference-in-differences analyses adjusted for patient comorbidities, initial PHQ-9 score, and time trends. The PATH program was associated with three times the odds of PHQ-9 follow-up (OR 3.28, 95% CI 1.79-5.99), twice the odds of a follow-up PC clinic visit (OR 1.74, 95% CI 0.99-3.08), and twice the odds of treatment response, defined as reduction in PHQ-9 score by ≥ 50% (OR 2.02, 95% CI 0.97-4.21).DiscussionOur results demonstrate that a centralized, remote care management initiative is both feasible and effective for large academic health systems aiming to improve depression outcome ascertainment, treatment engagement, and clinical care.
| S-EPMC7878605 | biostudies-literature
Project description:BackgroundPeople living in rural and remote locations are disadvantaged in accessing palliative care. This can be attributed to several factors including the role diversity and the low numbers of patients with specific conditions, as well as the difficulties rural health practitioners have in accessing opportunities for professional education. A program of multidisciplinary palliative care video conferences was presented to health practitioners across part of northern Australia in an effort to address this problem.MethodThe educational content of the video conferences was developed from participant responses to an educational needs assessment. Following cycles of four consecutive video conferences, 101 participants completed evaluative on-line surveys. The quantitative data were analysed using frequencies and analysis of variance tests with post-hoc analyses where appropriate, and an accessibility and remoteness index was used to classify their practice location.ResultsAll participants found the content useful regardless of their remoteness from the tertiary centre, their years of experience caring for palliative care patients or the number of patients cared for each year. However, change in confidence to provide palliative care as a result of attending the video conferences was significant across all disciplines, regardless of location. Doctors, medical students and allied health professionals indicated the greatest change in confidence.ConclusionsThe provision of professional education about palliative care issues via multidisciplinary video conferencing increased confidence among rural health practitioners, by meeting their identified need for topic and context specific education. This technology also enhanced the networking opportunities between practitioners, providing an avenue of ongoing professional support necessary for maintaining the health workforce in rural and remote areas. However, more attention should be directed to the diverse educational needs of allied health professionals.
| S-EPMC4085715 | biostudies-literature
Project description:IntroductionPeople living in rural and remote areas face substantial barriers to accessing timely and appropriate mental health services. In the Bowen Basin region of Queensland, Australia, barriers include: limited local providers, long waiting lists, unreliable telecommunication, and reluctance to trial telehealth. Isaac Navicare is a new, community co-designed care navigation service which addresses these barriers by coupling care navigation with supported telehealth, and referrals to mental health providers and other supports. We aimed to understand the reach and effectiveness of Isaac Navicare in improving access to mental health services and address an evidence gap on strategies for improving telehealth acceptability.MethodsThis mixed-methods implementation science evaluation used the RE-AIM Framework. It involved a client database review, survey and semi-structured interviews with service users during the 12-month pilot from November 2021.Results197 clients (128 adults, 69 minors) were referred to Navicare during the pilot. Half of adult clients were unemployed, meaning referral options were limited to low-cost or bulk-billed services. Participants described Navicare as supportive and effective in helping to access timely and appropriate mental health supports. Most clients who expressed a treatment modality preference selected face-to-face (n = 111, 85.4%), however most referrals were for telehealth (n = 103, 66.0%) due to a lack of suitable alternatives. The rapport and trust developed with the care navigator was critical for increasing willingness to trial telehealth. Barriers to telehealth included privacy issues, technical difficulties, unreliable internet/phone, and perceived difficulties developing therapeutic rapport. The supported telehealth site was under-utilised. The majority (88.3%, n = 182) of referrals to Navicare were from local health or community service providers or schools.DiscussionCoupling supportive, individualised care navigation with tele-mental health provider options resulted in increased uptake and acceptance of telehealth. Many barriers could be addressed through better preparation of clients and improving promotion and uptake of the supported telehealth site.ConclusionAttitudes towards telehealth have changed during the COVID-19 pandemic, however although the need exists, barriers remain to uptake. Telehealth alone is not enough. Coupling telehealth with other supports such as care navigation improves acceptance and uptake.
| S-EPMC10994303 | biostudies-literature
Project description:The slow but progressive adoption of health information technology (IT) nationwide promises to usher in a new era in health care. Electronic health record systems provide a complete patient record at the point of care and can help to alleviate some of the challenges of a fragmented delivery system, such as drug-drug interactions. Moreover, health IT promotes evidence-based practice by identifying gaps in recommended treatment and providing clinical decision-support tools. In addition, the data collected through digital records can be used to monitor patient outcomes and identify potential improvements in care protocols. Kaiser Permanente continues to advance its capability in each of these areas.
| S-EPMC3627785 | biostudies-other
Project description:High on the Heidelberg hills, inside the Advanced Training Centre of the European Molecular Biology Laboratory (EMBL) campus with its unique double-helix staircase, scientists gathered for the EMBL conference "Mammalian Genetics and Genomics: From Molecular Mechanisms to Translational Applications," organized in cooperation with the International Mammalian Genome Society (IMGS) and the Mouse Molecular Genetics (MMG) group. The conference attracted 205 participants from 30 countries, representing 6 of the 7 continents-all except Antarctica. It was a richly diverse group of geneticists, clinicians, and bioinformaticians, with presentations by established and junior investigators, including many trainees. From the 24th-27th of October 2017, they shared exciting advances in mammalian genetics and genomics research, from the introduction of cutting-edge technologies to descriptions of translational studies involving highly relevant models of human disease.
| S-EPMC6652222 | biostudies-literature