73 research outputs found

    Chapter 9: The need for big data standardization

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    Open Platform Concept for Blockchain- Enabled Crowdsourcing of Technology Development and Supply Chains

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    We outline the concept of an open technology platform which builds upon a publicly accessible library of fluidic designs, manufacturing processes and experimental characterisation, as well as virtualisation by a ‘digital twin” based on modelling, simulation and cloud computing. Backed by the rapidly emerging Web3 technology “Blockchain”, we significantly extend traditional approaches to effectively incentivise broader participation by an interdisciplinary ‘value network’ of diverse players. Ranging from skilled individuals (the ‘citizen scientist’, the ‘garage entrepreneur’) and more established research institutions to companies with their infrastructures, equipment and services, the novel platform approach enables all stakeholders to jointly contribute to value creation along more decentralised supply chain designs including research and technology development (RTD). Blockchain-enabled “Wisdom of the Crowds” and “Skin in the game” mechanisms secure “trust” and transparency between participants. Prediction markets are created for guiding decision making, planning and allocation of funding; competitive parallelisation of work and its validation from independent participants substantially enhances quality, credibility and speed of project outcomes in the real world along the entire path from RTD, fabrication and testing to eventual commercialisation. This novel, Blockchain-backed open platform concept can be led by a corporation, academic entity, a loosely organised group, or even “chieflessly” within a smart-contract encoded Decentralised Autonomous Organisation (DAO). The proposed strategy is particularly attractive for highly interdisciplinary fields like Lab-on-a- Chip systems in the context of manifold applications in the Life Sciences. As an exemplar, we outline the centrifugal microfluidic “Lab-on-a-Disc” technology. Rather than engaging in all sub-disciplines themselves, many smaller, highly innovative actors can focus on strengthening the product component distinguishing their unique selling point (USP), e.g., a particular bioassay, detection scheme or application scenario. In this effort, system integrators access underlying commons like fluidic design, manufacture, instrumentation and software from a more resilient and diversified supply chain, e.g., based on a verified pool of community-endorsed or certified providers

    Technical Research Priorities for Big Data

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    To drive innovation and competitiveness, organisations need to foster the development and broad adoption of data technologies, value-adding use cases and sustainable business models. Enabling an effective data ecosystem requires overcoming several technical challenges associated with the cost and complexity of management, processing, analysis and utilisation of data. This chapter details a community-driven initiative to identify and characterise the key technical research priorities for research and development in data technologies. The chapter examines the systemic and structured methodology used to gather inputs from over 200 stakeholder organisations. The result of the process identified five key technical research priorities in the areas of data management, data processing, data analytics, data visualisation and user interactions, and data protection, together with 28 sub-level challenges. The process also highlighted the important role of data standardisation, data engineering and DevOps for Big Data

    Consequences of an Intervention to Reduce Restrictive Side Rail Use in Nursing Homes

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    To examine the effect of an advanced practice nurse (APN) intervention on restrictive side rail usage in four nursing homes and with a sample of 251 residents. A secondary question explored the association between restrictive side rail reduction and bed-related falls. DESIGN : Pre- and posttest design. SETTING : Four urban nursing homes. PARTICIPANTS : All nursing home residents present in the nursing home at three time points (n=710, 719, and 707) and a subset of residents (n=251) with restrictive side rail use at baseline. INTERVENTION : APN consultation with individual residents and facility-wide education and consultation. MEASUREMENTS : Direct observation of side rail status, resident and nurse interview for functional status, mobility, cognition, behavioral symptoms, medical record review for demographics and treatment information, and incident reports for fall data. RESULTS : At the institutional level, one of the four nursing homes significantly reduced restrictive side rail use ( P =.01). At the individual participant level, 51.4% (n=130) reduced restrictive side rail use. For the group that reduced restrictive side rails, there was a significantly ( P <.001) reduced fall rate (−0.053; 95% confidence interval (CI)=−0.083 to −0.024), whereas the group that continued restrictive side rail did not demonstrate a significantly ( P =.17) reduced fall rate (−0.013; 95% CI=−0.056–0.030). CONCLUSION : An APN consultation model can safely reduce side rail use. Restrictive side rail reduction does not lead to an increase in bed-related falls. Although side rails serve many purposes, routine use of these devices to restrict voluntary movement and prevent falls is not supported.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/65685/1/j.1532-5415.2007.01082.x.pd

    Unchaining Collective Intelligence for Science, Research and Technology Development by Blockchain-Boosted Community Participation

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    Since its launch just over a decade ago by the cryptocurrency Bitcoin, the distributed ledger technology (DLT) blockchain has followed a breathtaking trajectory into manifold application spaces. This paper analyses how key factors underpinning the success of this ground-breaking “internet of value” technology, such as staking of collateral (“skin in the game”), competitive crowdsourcing, crowdfunding, and prediction markets, can be applied to substantially innovate the legacy organization of science, research and technology development (RTD). Here, we elaborate a highly integrative, community-based strategy where a token-based crypto-economy supports finding best possible consensus, trust and truth through adding unconventional elements known from reputation systems, betting, secondary markets and social networking. These tokens support the holder’s formalized reputation, and are used in liquid-democracy style governance and arbitration within projects or community-driven initiatives. This participatory research model serves as a solid basis for comprehensively leveraging collective intelligence by effectively incentivizing contributions from the crowd, such as intellectual property (IP), work, validation, assessment, infrastructure, education, assessment, governance, publication, and promotion of projects. On the analogy of its current blockbusters like peer-to-peer structured decentralized finance (“DeFi”), blockchain technology can seminally enhance the efficiency of science and RTD initiatives, even permitting to fully stage operations as a chiefless Decentralised Autonomous Organization (DAOs)

    How integrated are neurology and palliative care services? Results of a multicentre mapping exercise

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    Background: Patients affected by progressive long-term neurological conditions might benefit from specialist palliative care involvement. However, little is known on how neurology and specialist palliative care services interact. This study aimed to map the current level of connections and integration between these services. Methods: The mapping exercise was conducted in eight centres with neurology and palliative care services in the United Kingdom. The data were provided by the respective neurology and specialist palliative care teams. Questions focused on: i) catchment and population served; ii) service provision and staffing; iii) integration and relationships. Results: Centres varied in size of catchment areas (39-5,840 square miles) and population served (142,000-3,500,000). Neurology and specialist palliative care were often not co-terminus. Service provisions for neurology and specialist palliative care were also varied. For example, neurology services varied in the number and type of provided clinics and palliative care services in the settings they work in. Integration was most developed in Motor Neuron Disease (MND), e.g., joint meetings were often held, followed by Parkinsonism (made up of Parkinson’s Disease (PD), Multiple-System Atrophy (MSA) and Progressive Supranuclear Palsy (PSP), with integration being more developed for MSA and PSP) and least in Multiple Sclerosis (MS), e.g., most sites had no formal links. The number of neurology patients per annum receiving specialist palliative care reflected these differences in integration (range: 9–88 MND, 3–25 Parkinsonism, and 0–5 MS). Conclusions: This mapping exercise showed heterogeneity in service provision and integration between neurology and specialist palliative care services, which varied not only between sites but also between diseases. This highlights the need and opportunities for improved models of integration, which should be rigorously tested for effectiveness

    Interaction between non-executive and executive directors in English National Health Service trust boards: an observational study

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    Research funded by Burdett FoundationBackground National Health Service (NHS) trusts, which provide the majority of hospital and community health services to the English NHS, are increasingly adopting a ‘public firm’ model with a board consisting of executive directors who are trust employees and external non-executives chosen for their experience in a range of areas such as finance, health care and management. In this paper we compare the non-executive directors’ roles and interests in, and contributions to, NHS trust boards’ governance activities with those of executive directors; and examine non-executive directors’ approach to their role in board meetings. Methods Non-participant observations of three successive trust board meetings in eight NHS trusts (primary care trusts, foundation trusts and self-governing (non-foundation) trusts) in England in 2008–9. The observational data were analysed inductively to yield categories of behaviour reflecting the perlocutionary types of intervention which non-executive directors made in trust meetings. Results The observational data revealed six main perlocutionary types of questioning tactic used by non-executive directors to executive directors: supportive; lesson-seeking; diagnostic; options assessment; strategy seeking; and requesting further work. Non-executive board members’ behaviours in holding the executive team to account at board meetings were variable. Non-executive directors were likely to contribute to finance-related discussions which suggests that they did see financial challenge as a key component of their role. Conclusions The pattern of behaviours was more indicative of an active, strategic approach to governance than of passive monitoring or ‘rubber-stamping’. Nevertheless, additional means of maintaining public accountability of NHS trusts may also be required

    High-quality health systems in the Sustainable Development Goals era: time for a revolution.

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    Executive summary: Although health outcomes have improved in low-income and middle-income countries (LMICs) in the past several decades, a new reality is at hand. Changing health needs, growing public expectations, and ambitious new health goals are raising the bar for health systems to produce better health outcomes and greater social value. But staying on current trajectory will not suffice to meet these demands. What is needed are high-quality health systems that optimise health care in each given context by consistently delivering care that improves or maintains health, by being valued and trusted by all people, and by responding to changing population needs. Quality should not be the purview of the elite or an aspiration for some distant future; it should be the DNA of all health systems. Furthermore, the human right to health is meaningless without good quality care because health systems cannot improve health without it. We propose that health systems be judged primarily on their impacts, including better health and its equitable distribution; on the confidence of people in their health system; and on their economic benefit, and processes of care, consisting of competent care and positive user experience. The foundations of high-quality health systems include the population and their health needs and expectations, governance of the health sector and partnerships across sectors, platforms for care delivery, workforce numbers and skills, and tools and resources, from medicines to data. In addition to strong foundations, health systems need to develop the capacity to measure and use data to learn. High-quality health systems should be informed by four values: they are for people, and they are equitable, resilient, and efficient. For this Commission, we examined the literature, analysed surveys, and did qualitative and quantitative research to evaluate the quality of care available to people in LMICs across a range of health needs included in the Sustainable Development Goals (SDGs). We explored the ethical dimensions of high-quality care in resource-constrained settings and reviewed available measures and improvement approaches. We reached five conclusions: The care that people receive is often inadequate, and poor-quality care is common across conditions and countries, with the most vulnerable populations faring the worst Data from a range of countries and conditions show systematic deficits in quality of care. In LMICs, mothers and children receive less than half of recommended clinical actions in a typical preventive or curative visit, less than half of suspected cases of tuberculosis are correctly managed, and fewer than one in ten people diagnosed with major depressive disorder receive minimally adequate treatment. Diagnoses are frequently incorrect for serious conditions, such as pneumonia, myocardial infarction, and newborn asphyxia. Care can be too slow for conditions that require timely action, reducing chances of survival. At the system level, we found major gaps in safety, prevention, integration, and continuity, reflected by poor patient retention and insufficient coordination across platforms of care. One in three people across LMICs cited negative experiences with their health system in the areas of attention, respect, communication, and length of visit (visits of 5 min are common); on the extreme end of these experiences were disrespectful treatment and abuse. Quality of care is worst for vulnerable groups, including the poor, the less educated, adolescents, those with stigmatised conditions, and those at the edges of health systems, such as people in prisons. Universal health coverage (UHC) can be a starting point for improving the quality of health systems. Improving quality should be a core component of UHC initiatives, alongside expanding coverage and financial protection. Governments should start by establishing a national quality guarantee for health services, specifying the level of competence and user experience that people can expect. To ensure that all people will benefit from improved services, expansion should prioritise the poor and their health needs from the start. Progress on UHC should be measured through effective (quality-corrected) coverage. High-quality health systems could save over 8 million lives each year in LMICs More than 8 million people per year in LMICs die from conditions that should be treatable by the health system. In 2015 alone, these deaths resulted in US$6 trillion in economic losses. Poor-quality care is now a bigger barrier to reducing mortality than insufficient access. 60% of deaths from conditions amenable to health care are due to poor-quality care, whereas the remaining deaths result from non-utilisation of the health system. High-quality health systems could prevent 2·5 million deaths from cardiovascular disease, 1 million newborn deaths, 900 000 deaths from tuberculosis, and half of all maternal deaths each year. Quality of care will become an even larger driver of population health as utilisation of health systems increases and as the burden of disease shifts to more complex conditions. The high mortality rates in LMICs for treatable causes, such as injuries and surgical conditions, maternal and newborn complications, cardiovascular disease, and vaccine preventable diseases, illustrate the breadth and depth of the health-care quality challenge. Poor-quality care can lead to other adverse outcomes, including unnecessary health-related suffering, persistent symptoms, loss of function, and a lack of trust and confidence in health systems. Waste of resources and catastrophic expenditures are economic side effects of poor-quality health systems. As a result of this, only one-quarter of people in LMICs believe that their health systems work well. Health systems should measure and report what matters most to people, such as competent care, user experience, health outcomes, and confidence in the system Measurement is key to accountability and improvement, but available measures do not capture many of the processes and outcomes that matter most to people. At the same time, data systems generate many metrics that produce inadequate insight at a substantial cost in funds and health workers' time. For example, although inputs such as medicines and equipment are commonly counted in surveys, these are weakly related to the quality of care that people receive. Indicators such as proportion of births with skilled attendants do not reflect quality of childbirth care and might lead to false complacency about progress in maternal and newborn health. This Commission calls for fewer, but better, measures of health system quality to be generated and used at national and subnational levels. Countries should report health system performance to the public annually by use of a dashboard of key metrics (eg, health outcomes, people's confidence in the system, system competence, and user experience) along with measures of financial protection and equity. Robust vital registries and trustworthy routine health information systems are prerequisites for good performance assessment. Countries need agile new surveys and real-time measures of health facilities and populations that reflect the health systems of today and not those of the past. To generate and interpret data, countries need to invest in national institutions and professionals with strong quantitative and analytical skills. Global development partners can support the generation and testing of public goods for health system measurement (civil and vital registries, routine data systems, and routine health system surveys) and promote national and regional institutions and the training and mentoring of scientists. New research is crucial for the transformation of low-quality health systems to high-quality ones Data on care quality in LMICs do not reflect the current disease burden. In many of these countries, we know little about quality of care for respiratory diseases, cancer, mental health, injuries, and surgery, as well as the care of adolescents and elderly people. There are vast blind spots in areas such as user experience, system competence, confidence in the system, and the wellbeing of people, including patient-reported outcomes. Measuring the quality of the health system as a whole and across the care continuum is essential, but not done. Filling in these gaps will require not only better routine health information systems for monitoring, but also new research, as proposed in the research agenda of this Commission. For example, research will be needed to rigorously evaluate the effects and costs of recommended improvement approaches on health, patient experience, and financial protection. Implementation science studies can help discern the contextual factors that promote or hinder reform. New data collection and research should be explicitly designed to build national and regional research capacity. Improving quality of care will require system-wide action To address the scale and range of quality deficits we documented in this Commission, reforming the foundations of the health system is required. Because health systems are complex adaptive systems that function at multiple interconnected levels, fixes at the micro-level (ie, health-care provider or clinic) alone are unlikely to alter the underlying performance of the whole system. However, we found that interventions aimed at changing provider behaviour dominate the improvement field, even though many of these interventions have a modest effect on provider performance and are difficult to scale and sustain over time. Achieving high-quality health systems requires expanding the space for improvement to structural reforms that act on the foundations of the system. This Commission endorses four universal actions to raise quality across the health system. First, health system leaders need to govern for quality by adopting a shared vision of quality care, a clear quality strategy, strong regulation, and continuous learning. Ministries of health cannot accomplish this alone and need to partner with the private sector, civil society, and sectors outside of health care, such as education, infrastructure, communication, and transport. Second, countries should redesign service delivery to maximise health outcomes rather than geographical access to services alone. Primary care could tackle a greater range of low-acuity conditions, whereas hospitals or specialised health centres should provide care for conditions, such as births, that need advanced clinical expertise or have the risk of unexpected complications. Third, countries should transform the health workforce by adopting competency-based clinical education, introducing training in ethics and respectful care, and better supporting and respecting all workers to deliver the best care possible. Fourth, governments and civil society should ignite demand for quality in the population to empower people to hold systems accountable and actively seek high-quality care. Additional targeted actions in areas such as health financing, management, district-level learning, and others can complement these efforts. What works in one setting might not work elsewhere, and improvement efforts should be adapted for local context and monitored. Funders should align their support with system-wide strategies rather than contribute to the proliferation of micro-level efforts. In this Commission, we assert that providing health services without guaranteeing a minimum level of quality is ineffective, wasteful, and unethical. Moving to a high-quality health system—one that improves health and generates confidence and economic benefits—is primarily a political, not technical, decision. National governments need to invest in high-quality health systems for their own people and make such systems accountable to people through legislation, education about rights, regulation, transparency, and greater public participation. Countries will know that they are on the way towards a high-quality, accountable health system when health workers and policymakers choose to receive health care in their own public institutions.Fil: Kruk, Margaret E.. Harvard University. Harvard School of Public Health; Estados UnidosFil: Gage, Anna D.. Harvard University. Harvard School of Public Health; Estados UnidosFil: Arsenault, Catherine. Harvard University. Harvard School of Public Health; Estados UnidosFil: Jordan, Keely. New York College of Global Public Health; Estados UnidosFil: Leslie, Hannah H.. Harvard University. Harvard School of Public Health; Estados UnidosFil: Roder DeWan, Sanam. Harvard University. Harvard School of Public Health; Estados UnidosFil: Adeyi, Olusoji. Banco Mundial; Estados UnidosFil: Barker, Pierre. Institute For Healthcare Improvement; Estados UnidosFil: Daelmans, Bernadette. Organizacion Mundial de la Salud; SuizaFil: Doubova, Svetlana V.. Instituto Mexicano del Seguro Social; MĂ©xicoFil: English, Mike. KEMRI - Wellcome Trust; KeniaFil: Garcia Elorrio, Ezequiel. Instituto de Efectividad ClĂ­nica y Sanitaria; Argentina. Consejo Nacional de Investigaciones CientĂ­ficas y TĂ©cnicas; ArgentinaFil: Guanais, Frederico. Banco Interamericano de Desarrollo; Estados UnidosFil: Gureje, Oye. University Of Ibadan; NigeriaFil: Hirschhorn, Lisa R.. Northwestern University; Estados UnidosFil: Jiang, Lixin. National Center For Cardiovascular Diseases; ChinaFil: Kelley, Edward. Organizacion Mundial de la Salud; SuizaFil: Lemango, Ephrem Tekle. Federal Ministry of Health; EtiopĂ­aFil: Liljestrand, Jerker. Bill and Melinda Gates Foundation; Estados UnidosFil: Malata, Address. Malawi University Of Science And Technology; MalauiFil: Marchant, Tanya. London School of Hygiene & Tropical Medicine; Reino UnidoFil: Matsoso, Malebona Precious. National Department of Health of the Republic of South Africa; SudĂĄfricaFil: Meara, John G.. Harvard Medical School; Estados UnidosFil: Mohanan, Manoj. University of Duke; Estados UnidosFil: Ndiaye, Youssoupha. Ministry of Health and Social Action of the Republic of Senegal; SenegalFil: Norheim, Ole F.. University of Bergen; NoruegaFil: Reddy, K. Srinath. Public Health Foundation of India; IndiaFil: Rowe, Alexander K.. Centers for Disease Control and Prevention; Estados UnidosFil: Salomon, Joshua A.. Stanford University School Of Medicine; Estados UnidosFil: Thapa, Gagan. Legislature Parliament Of Nepal; NepalFil: Twum Danso, Nana A. Y.. Maza; GhanaFil: Pate, Muhammad. 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