Sleep and Circadian Informatics Data Harmonization: A Workshop Report from the Sleep Research Society and Sleep Research Network

The increasing availability and complexity of sleep and circadian data are equally exciting and challenging. The field is in constant technological development, generating better high-resolution physiological and molecular data than ever before. Yet, the promise of large-scale studies leveraging millions of patients is limited by suboptimal approaches for data sharing and interoperability. As a result, integration of valuable clinical and basic resources is problematic, preventing knowledge discovery and rapid translation of findings into clinical care. To understand the current data landscape in the sleep and circadian domains, the Sleep Research Society (SRS) and the Sleep Research Network (now a task force of the SRS) organized a workshop on informatics and data harmonization, presented at the World Sleep Congress 2019, in Vancouver, Canada. Experts in translational informatics gathered with sleep research experts to discuss opportunities and challenges in defining strategies for data harmonization. The goal of this workshop was to fuel discussion and foster innovative approaches for data integration and development of informatics infrastructure supporting multi-site collaboration. Key recommendations included collecting and storing findable, accessible, interoperable, and reusable data; identifying existing international cohorts and resources supporting research in sleep and circadian biology; and defining the most relevant sleep data elements and associated metadata that could be supported by early integration initiatives. This report introduces foundational concepts with the goal of facilitating engagement between the sleep/circadian and informatics communities and is a call to action for the implementation and adoption of data harmonization strategies in this domain.

Integrating inspection management (IM) in piping system of petroleum industry in Iran

Purpose This paper aims to report on the findings from a research project, incorporated by Iran’s Ministry of Petroleum, investigating the integration of inspection management with analysis of document information. Design/methodology/approach A combination of group and individual interviews were undertaken with qualitative methods of analysis to develop an integrated process model. The model developed uses integrity management factors, which allows flexibility and the early integration of inspection management systems at a strategic level, although detailed planning is still required through the use of integrated management tools. The model combines information on responsibilities, tasks and policies, of personnel in the inspection management of the piping system with the oil and gas industry. Findings The six inspection activities recognized for the main practical model are, namely, identify pipeline situation; inspect and measure defects; inspection assessment; design inspection; implement inspection activities and measure and report inspection. Originality/value This research presented not only a process but also the framework and techniques to manage and improve management effectiveness and inspection efficiency in pipelines of the oil and gas industry. This study will be useful to researchers maintenance professionals and others concerned with inspection and maintenance management of facilities and equipment in the oil and gas industry.

Caregivers’ View of Socio-Medical Care in the Terminal Phase of Amyotrophic Lateral Sclerosis—How Can We Improve Holistic Care in ALS?

Multidimensional socio-medical care with an early integration of palliative principles is strongly recommended in amyotrophic lateral sclerosis (ALS), but provided inconsistently. We conducted telephone interviews with 49 former caregivers of deceased ALS patients to examine their experience of care in the terminal phase including caregiver burden. Patients who received specialized palliative care (45% of patients) were more likely to die at home (p = 0.004) and without burdening symptoms (p = 0.021). The majority of caregivers (86%) reported deficits in socio-medical care. Most frequently mentioned were problems receiving medical aids (45%) and a lack of caregiver support (35%). A higher level of deficits experienced by caregivers was associated with negative health outcomes on the side of the caregivers (reported by 57% of them; p = 0.002) and stronger caregiver burden (p = 0.004). To provide good quality of dying to patients and reduce the burden on caregivers, multidimensional—including palliative—care in ALS urgently needs to be strengthened in the healthcare structures.

Testing the Applicability of the Safe-by-Design Concept: A Theoretical Case Study Using Polymer Nanoclay Composites for Coffee Capsules

The production and use of engineered nanomaterials and nano-enabled products is increasing, enabling innovations in many application areas, e.g., in the sector of food contact materials. However, nanosafety-relevant information for chemical risk assessment is still scarce, leading to a high level of uncertainty and making the early integration of safety to the innovation process indispensable. This study analyzed the strengths, weaknesses, and applicability of the nano-specific Safe-by-Design (SbD) concept using nanoclay-containing polymer coffee capsules as a theoretical case study. In addition, a material flow analysis was conducted to identify exposure pathways and potential risks, and a multi-stakeholder approach was applied to discursively discuss challenges when attempting to combine safety and innovation at an early stage. The results indicate that the SbD concept is generally welcomed by all stakeholders, but there is a lack of clear rules on the transfer of information between the actors involved. Furthermore, a voluntary, practical application usually requires in-depth knowledge of nanotechnology and often additional financial efforts. Therefore, incentives need to be created, as there is currently no obvious added value from a company’s point of view. The SbD concept should be further developed, standardized, and integrated into existing legal frameworks to be implemented effectively.

Accelerating Hydrocarbon Maturation and Project Delivery by 30% with Digitalization - Standardizing on the Fly Analysis to Enable Informed Decision Making Using Petabytes of Petro Technical Data

In recent years, with the steep drop and increased volatility in oil price, there is an urgency for making our field (re-development) plans more dynamic and efficient with faster payback and with particular emphasis on robustness against uncertainties. This paper describes a root cause analysis and a methodology to achieve up to ~30% improvement in field development planning project cycle and developing a better-integrated reservoir understanding. A comprehensive integrated analysis of available data is a key success criterion for robust decision-making. A detailed value stream mapping and a timeline analysis for data analysis in the hydrocarbon maturation process revealed that our process cycle efficiency is only 16% with a significant room for improvement. Any improvement can be directly translated to man-hour cost saving and acceleration of oil delivery. Effective use of technology and digitalization for knowledge management, standardized ways of working and easy access to historical data, analysis and diagnostics were identified as key focus areas to improve delivery. An innovative process and web based digital platform, iResDAT, is developed for accelerating data analysis. It mines from volumes of petro-technical databases and translates data into standardized diagnostics using latest data analytics and visualization technologies. It has already reduced dramatically the time to mine critical subsurface data and prepare required integrated diagnostics that are auditable and can be re-created in a few seconds. Based on the early pilot studies the cycle time reduction in the data analysis phase is close to 30% with improved quality and standardization of the integrated analysis. It has already transformed the ways of working where the subsurface discussion can happen across disciplines using a single platform that enforces early integration for reservoir understanding and associated uncertainty characterization. It is a web-based platform where the diagnostic dashboards are crowd sourced; sustained and enhanced by the business to ensure the relevance and sustainability with the Corporate Data Management and IT functions. It is a building block towards quality controlled and auditable data analysis and interpreted dataset, which may form the backbone for any advanced analytics in future to enable digitally enabled hydrocarbon maturation.

Trend analysis of palliative care consultation service for terminally ill non-cancer patients in Taiwan: a 9-year observational study

Backgrounds Early integration of palliative care for terminally ill non-cancer patients improves quality of life. However, there are scanty data on Palliative Care Consultation Service (PCCS) among non-cancer patients. Methods In this 9-year observational study Data were collected from the Hospice-Palliative Clinical Database (HPCD) of Taichung Veterans General Hospital (TCVGH). Terminally ill non-cancer patients with 9 categories of diagnoses who received PCCS during 2011 to 2019 were enrolled. Trend analysis was performed to evaluate differences in categories of diagnosis throughout study period, duration of PCCS, patient outcomes, DNR declaration, awareness of disease by patients and families before and after PCCS. Results In total, 536 non-cancer patients received PCCS from 2011 to 2019 with an average age of 70.7 years. The average duration of PCCS was 18.4 days. The distributions of age, gender, patient outcomes, family’s awareness of disease before PCCS, and patient’s awareness of disease after PCCS were significantly different among the diagnoses. Organic brain disease and Chronic kidney disease (CKD) were the most prevalent diagnoses in patients receiving PCCS in 2019. For DNR declaration, the percentage of patients signing DNR before PCCS remained high throughout the study period (92.8% in 2019). Patient outcomes varied according to the disease diagnoses. Conclusion This 9-year observational study showed that the trend of PCCS among non-cancer patients had changed over the duration of the study. An increasing number of terminally ill non-cancer patients received PCCS during late life, thereby increasing the awareness of disease for both patients and families, which would tend to better prepare terminally ill patients for end-of-life as they may consider DNR consent. Early integration of PCCS into ordinary care for terminally non-cancer patients is essential for better quality of life.

Mikor és hogyan integráljuk az onkológiai és a palliatív ellátást?

Összefoglaló. A palliatív ellátások korai bevonása az onkológiai betegek ellátásába előnnyel jár mind a beteg életminősége, mind a kezelés színvonala, mind a költséghatékonyság szempontjából. Szükség van egy olyan modellre, mely alapján a megfelelő időben, a megfelelő beteg a megfelelő minőségű palliatív ellátásban részesül. Ebben a közleményben a palliatív ellátás korai integrációjának előnyei, szintjei és a speciális palliatív ellátás fogalmának ismertetése után a leginkább elterjedt beutalási modellek előnyeit és hátrányait mutatjuk be a nemzetközi szakirodalom alapján. A speciális palliatív ellátást igénylő betegek kiszűrésére szolgáló, prognózisalapú modellek hátránya, hogy nincs elég kapacitás az ilyen módon beutalt nagyszámú beteg ellátására, ezért széles körben nem terjedtek el. A tüneteken alapuló modellek sokszor bonyolultak és a mindennapi klinikai gyakorlatban nem használatosak. Az új kutatások alapján egyszerű, gyakorlatias kérdéssorokat alkalmaznak, melyekkel könnyen kiemelhetők, akik profitálnak a speciális palliatív intervencióból. Ezek közül a Yale egyetemi és a PALLIA -10 modellt ismertetjük részletesen. Amennyiben az aktív onkológiai ellátást végzők a megfelelő palliatív beutalási kritériumokat ismerik és alkalmazzák, a betegek időben jutnak a megfelelő komplex kezeléshez anélkül, hogy a palliatív ellátórendszer túlterhelődne. Orv Hetil. 2021; 162(44): 1769–1775. Summary. Early integration of palliative care into the trajectory of cancer care brings advantages into the patients’ quality of life, the level of care and cost-efficiency, too. On the basis of a predefined model, the right patient may receive the right level of palliative care at the right time. Having defined the advantages, the levels of early integration of palliative care and the concept of special palliative care, we also aim to describe the advantages and disadvantages of the most common referral models on the basis of international literature in this article. The drawback of prognosis-based models to identify patients needing special palliative care is the lack of capacity to provide care for the large number of patients so recognised; therefore they have not become widespread. Needs-based models tend to be complicated and thus rarely applied in everyday clinical practice. On the basis of new researches, simple, pragmatic questionnaires are utilised through which the patients who could benefit from special palliative care interventions are easy to identify. Here we give a detailed report of the Yale University and PALLIA-10 models. On condition that appropriate palliative referral criteria are known and applied by active oncology care providers, patients may receive adequate complex care without the palliative care system being overloaded. Orv Hetil. 2021; 162(44): 1769–1775.

Public knowledge and attitudes concerning palliative care

ObjectiveWHO recommends early integration of palliative care alongside usual care to improve quality of life, although misunderstanding of palliative care may impede this. We compared the public’s perceived and actual knowledge of palliative care, and examined the relationship of this knowledge to attitudes concerning palliative care.MethodsWe analysed data from a survey of a representative sample of the Canadian public, accessed through a survey panel in May–June 2019. We compared high perceived knowledge (‘know what palliative care is and could explain it’) with actual knowledge of the WHO definition (knew ≥5/8 components, including that palliative care can be provided early in the illness and together with life-prolonging treatments), and examined their associations with attitudes to palliative care.ResultsOf 1518 adult participants residing in Canada, 45% had high perceived knowledge, of whom 46% had high actual knowledge. Participants with high (vs low) perceived knowledge were more likely to associate palliative care with end-of-life care (adjusted OR 2.15 (95% CI 1.66 to 2.79), p<0.0001) and less likely to believe it offered hope (0.62 (95% CI 0.47 to 0.81), p=0.0004). Conversely, participants with high (vs low) actual knowledge were less likely to find palliative care fearful (0.67 (95% CI 0.52 to 0.86), p=0.002) or depressing (0.72 (95% CI 0.56 to 0.93), p=0.01) and more likely to believe it offered hope (1.88 (95% CI 1.46 to 2.43), p<0.0001).ConclusionsStigma regarding palliative care may be perpetuated by those who falsely believe they understand its meaning. Public health education is needed to increase knowledge about palliative care, promote its early integration and counter false assumptions.

Palliative care referral criteria and outcomes in cancer and heart failure: a systematic review of literature

Background Cardiotoxicity resulting in heart failure (HF) is among the most dreaded complications of cancer therapy and can significantly impact morbidity and mortality. Leading professional societies in cardiology and oncology recommend improved access to hospice and palliative care (PC) for patients with cancer and advanced HF. However, there is a paucity of published literature on the use of PC in cardio-oncology, particularly in patients with HF and a concurrent diagnosis of cancer. Aims To identify existing criteria for referral to and early integration of PC in the management of cases of patients with cancer and patients with HF, and to identify assessments of outcomes of PC intervention that overlap between patients with cancer and patients with HF. Design Systematic literature review on PC in patients with HF and in patients with cancer. Data sources Databases including Ovid Medline, Ovid Embase, Cochrane Library, and Web of Science from January 2009 to September 2020. Results Sixteen studies of PC in cancer and 14 studies of PC in HF were identified after screening of the 8647 retrieved citations. Cancer and HF share similarities in their patient-reported symptoms, quality of life, symptom burden, social support needs, readmission rates, and mortality. Conclusion The literature supports the integration of PC into oncology and cardiology practices, which has shown significant benefit to patients, caregivers, and the healthcare system alike. Incorporating PC in cardio-oncology, particularly in the management of HF in patients with cancer, as early as at diagnosis, will enable patients, family members, and healthcare professionals to make informed decisions about various treatments and end-of-life care and provide an opportunity for patients to participate in the decisions about how they will spend their final days.