Alcuni abstract di articoli che trattano argomenti relativi all'eHealth

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Adoption of precision medicine: limitations and considerations

Research is ongoing all over the world for identifying the barriers and finding effective solutions to accelerate the projection of Precision Medicine (PM) in the healthcare industry. Yet there has not been a valid and practical model to tackle the several challenges that have slowed down the widespread of this clinical practice. This study aimed to highlight the major limitations and considerations for implementing Precision Medicine. The two theories Diffusion of Innovation and Socio-Technical are employed to discuss the success indicators of PM adoption. Throughout the theoretical assessment, two key theoretical gaps are identified and related findings are discussed.FCT – Fundação para a Ciência e Tecnologia within the Projects Scope: DSAIPA/DS/0084/201

Patients' and professionals' views related to ethical issues in precision medicine: a mixed research synthesis

Results Many patients and professionals expect high benefits from precision medicine and have a positive attitude towards it. However, patients and professionals also perceive some risks. Commonly perceived risks include: lack of evidence for accuracy of tests and efficacy of treatments; limited knowledge of patients, which makes informed consent more difficult; possible unavailability of access to precision medicine for underprivileged people and ethnic minorities; misuse of data by insurance companies and employers, potential of racial stigmatization due to genetic information; unwanted communication of incidental findings; changes in doctor-patient-relationship through focusing on data; and the problem that patients could feel under pressure to optimize their health. Conclusions National legislation and guidelines already minimize many risks associated with precision medicine. However, from our perspective some problems require more attention. Should hopes for precision medicine's benefits be fulfilled, then the ethical principle of justice would require an unlimited access to precision medicine for all people. The potential for autonomous patients' decisions must be greatly enhanced by improvements in patient education. Harm from test results must be avoided in any case by the highest possible data security level and communication guidelines. Changes in the doctor-patient relationship and the impact of precision medicine on the quality of life should be further investigated. Additionally, the cost-effectiveness of precision medicine should be further examined, in order to avoid malinvestment

Patients' perspective on emergency treatment of ophthalmologic diseases during the first phase of SARS-CoV2 pandemic in a tertiary referral center in Germany - the COVID-DETOUR questionnaire study

Background During the first wave of the COVID-19 pandemic, the need of treatment of urgent ophthalmological diseases and the possible risk of a SARS-CoV-2 infection had to be weighed against each other. In this questionnaire study, we aimed to analyze potential barriers and patients' health beliefs during and after the lockdown early 2020 in a tertiary referral center in Kiel, Germany. Results Ninety-three patients were included, 43 in subgroup A (before April 20th) and 50 in subgroup B (April 20th or later). Retinal disorders were the most common causes for admission (approximately 60%).. Only 8 patients (8.6%) experienced a delay between their decision to visit a doctor until the actual examination. Every fourth patient was afraid of a COVID-19 infection, and expected a higher likelihood for an infection at the hospital. Patients with comorbidities tended to be more likely to be afraid of an infection (correlation coefficient 0.183, p = 0.0785) and were significantly more likely to be concerned about problems with organizing follow-up care (corr. Coefficient 0.222, p = 0.0328). Higher age was negatively correlated with fear of infection (corr. Coefficient - 0.218, p-value 0.034). Conclusion In this questionnaire study, only a minority of patients indicated a delay in treatment, regardless of whether symptoms occurred before or after the lockdown before April 20th, 2020. While patients with comorbidities were more concerned about infection and problems during follow-up care, patients of higher age - who have a higher mortality - were less afraid. Protection of high-risk groups should be prioritized during the SARS-CoV-2 pandemic. Trial registration The study was registered as DRKS00021630 at the DRKS (Deutsches Register Klinischer Studien) before the conduction of the study on May 5th, 2020

How Can We Move Clinical Genomics Beyond the Hype?

Examines the debate over increased use of genetic testing, due in part to lax regulation, and its consequences: wasteful spending, patient harm, and health system challenges. Makes recommendations for implementation of and data on promising technologies

Synergy-COPD: a systems approach for understanding and managing chronic diseases.

Chronic diseases (CD) are generating a dramatic societal burden worldwide that is expected to persist over the next decades. The challenges posed by the epidemics of CD have triggered a novel health paradigm with major consequences on the traditional concept of disease and with a profound impact on key aspects of healthcare systems. We hypothesized that the development of a systems approach to understand CD together with the generation of an ecosystem to transfer the acquired knowledge into the novel healthcare scenario may contribute to a cost-effective enhancement of health outcomes. To this end, we designed the Synergy-COPD project wherein the heterogeneity of chronic obstructive pulmonary disease (COPD) was addressed as a use case representative of CD. The current manuscript describes main features of the project design and the strategies put in place for its development, as well the expected outcomes during the project life-span. Moreover, the manuscript serves as introductory and unifying chapter of the different papers associated to the Supplement describing the characteristics, tools and the objectives of Synergy-COP

Innovation management in healthcare: A multi-level perspective in three essays

Innovation in healthcare is a central way of coping with the changes affecting the healthcare system through the megatrends of demographic change, digitalization as well as the opportunities in the life-sciences sector and the “-omics” subjects. Due to the multiple facets of the topic, research on innovation in healthcare is diverse and draws insights from systems theory, management theory, human resources, innovation and change management. While the literature on innovation in healthcare has grown steadily in the last 20 years and publications on pharmaceutical and medical device innovation, health technology assessment strategies, or digital innovations have increased significantly, other areas such as sectoral health innovation systems, the creation and implementation of innovation in hospitals still remain fairly uncharted. Applying established concepts such as systems of innovation theory, mass customization theory or management of employee involvement in innovation activities to the healthcare sector provides new insights into a field that is often considered a “blackbox”. This thesis adds to the topic in three essays, each focusing on a different aspect and depth level ranging from a macro perspective on healthcare innovation on a global scale to a meso level perspective on the implementation of personalized medicine in one country and putting a micro lens on innovation activities of hospital staff. The aim of this thesis is to provide an overview for researchers, policy makers and healthcare stakeholders about current developments, propose tools for measuring innovation and allow for benchmarking the current status quo in healthcare in order to foster new and innovative developments

Responsible personalised medicine: Exploring the ethical, legal, social, political and economic issues of manufacturing, distribution, access and reimbursement. A Report of the Responsible Personalised Medicine Project, UCL Future Targeted Manufacturing in Healthcare Hub

This report provides an overview of the ethical, legal, social, political and economic (ELSPE) issues underpinning the “manufacturing, business and regulatory challenges” that confront the development and delivery of affordable and accessible new targeted biological medicines. We specifically focus on the evolving definitions and its implication for the public understanding of personalised medicine (section 1), issues of manufacturing and distribution of Personalised Therapies (section 2) and institutional readiness (section 3) specifically focusing on emerging regulatory and reimbursement pathways (section 3.2) and how these are shaping or being shaped by ‘real world evidence’ (section 3.3). This is followed by our reflection on the implications of and for the entangled, complex and contingent interrelationships between personalised medicine, society and responsibility (section 4). Finally we conclude with discussion of the gaps and priorities for future ELSPE research on manufacturing of advanced biotherapeutics in terms of access, reimbursement, skills and infrastructure, regulation, responsible research and innovation (RRI) and the international political economy of emerging personalised medicine markets (section 5). This is a necessarily narrower review of the spectrum of ELSPE issues that attend personalised medicine activities and reflects this report’s aims to focus on those aspects of personalised medicine addressed by the UCL’s Future Targeted Manufacturing in Healthcare Hub