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  1. Article ; Online: The Advance Care Compass– A New Mechanics for Digitally Transforming Advance Directives

    Nikola Biller-Andorno / Armin Biller

    Frontiers in Digital Health, Vol

    2021  Volume 3

    Abstract: Advance directives allow people to declare their treatment preferences for a potential future state of incompetency. Covid-19, with its high numbers of quickly deteriorating patients requiring intensive care, has acutely demonstrated how helpful it would ...

    Abstract Advance directives allow people to declare their treatment preferences for a potential future state of incompetency. Covid-19, with its high numbers of quickly deteriorating patients requiring intensive care, has acutely demonstrated how helpful it would be for clinicians to have reliable, readily available, up-to-date information at hand to be able to act in accordance with what the individual patient would have wanted. Yet for the past few decades advance directives have fallen short of their potential, for various reasons. At worst, advance directives are perceived as unwieldy legal documents that put excessive demands on patients without providing useful guidance for better care. Recent efforts such as advance care planning have tried to remedy some of these shortcomings but have so far met with limited success. We suggest a new concept—the Advance Care Compass—that harnesses the potential of digitalization in healthcare to overcome many of difficulties encountered so far.
    Keywords advance care planning (ACP) ; ethics ; digital health adoption ; patient preferences ; patient-centered care ; health care improvement ; Medicine ; R ; Public aspects of medicine ; RA1-1270 ; Electronic computers. Computer science ; QA75.5-76.95
    Language English
    Publishing date 2021-10-01T00:00:00Z
    Publisher Frontiers Media S.A.
    Document type Article ; Online
    Database BASE - Bielefeld Academic Search Engine (life sciences selection)

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  2. Article ; Online: The anti-vaccination infodemic on social media

    Federico Germani / Nikola Biller-Andorno

    PLoS ONE, Vol 16, Iss 3, p e

    A behavioral analysis.

    2021  Volume 0247642

    Abstract: Vaccinations are without doubt one of the greatest achievements of modern medicine, and there is hope that they can constitute a solution to halt the ongoing COVID-19 pandemic. However, the anti-vaccination movement is currently on the rise, spreading ... ...

    Abstract Vaccinations are without doubt one of the greatest achievements of modern medicine, and there is hope that they can constitute a solution to halt the ongoing COVID-19 pandemic. However, the anti-vaccination movement is currently on the rise, spreading online misinformation about vaccine safety and causing a worrying reduction in vaccination rates worldwide. In this historical time, it is imperative to understand the reasons of vaccine hesitancy, and to find effective strategies to dismantle the rhetoric of anti-vaccination supporters. For this reason, we analyzed the behavior of anti-vaccination supporters on the platform Twitter. Here we identify that anti-vaccination supporters, in comparison with pro-vaccination supporters, share conspiracy theories and make use of emotional language. We demonstrate that anti-vaccination supporters are more engaged in discussions on Twitter and share their contents from a pull of strong influencers. We show that the movement's success relies on a strong sense of community, based on the contents produced by a small fraction of profiles, with the community at large serving as a sounding board for anti-vaccination discourse to circulate online. Our data demonstrate that Donald Trump, before his profile was suspended, was the main driver of vaccine misinformation on Twitter. Based on these results, we welcome policies that aim at halting the circulation of false information about vaccines by targeting the anti-vaccination community on Twitter. Based on our data, we also propose solutions to improve the communication strategy of health organizations and build a community of engaged influencers that support the dissemination of scientific insights, including issues related to vaccines and their safety.
    Keywords Medicine ; R ; Science ; Q
    Language English
    Publishing date 2021-01-01T00:00:00Z
    Publisher Public Library of Science (PLoS)
    Document type Article ; Online
    Database BASE - Bielefeld Academic Search Engine (life sciences selection)

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  3. Article ; Online: Exploring the role of AI in classifying, analyzing, and generating case reports on assisted suicide cases

    Giovanni Spitale / Gerold Schneider / Federico Germani / Nikola Biller-Andorno

    Frontiers in Artificial Intelligence, Vol

    feasibility and ethical implications

    2023  Volume 6

    Abstract: This paper presents a study on the use of AI models for the classification of case reports on assisted suicide procedures. The database of the five Dutch regional bioethics committees was scraped to collect the 72 case reports available in English. We ... ...

    Abstract This paper presents a study on the use of AI models for the classification of case reports on assisted suicide procedures. The database of the five Dutch regional bioethics committees was scraped to collect the 72 case reports available in English. We trained several AI models for classification according to the categories defined by the Dutch Termination of Life on Request and Assisted Suicide (Review Procedures) Act. We also conducted a related project to fine-tune an OpenAI GPT-3.5-turbo large language model for generating new fictional but plausible cases. As AI is increasingly being used for judgement, it is possible to imagine an application in decision-making regarding assisted suicide. Here we explore two arising questions: feasibility and ethics, with the aim of contributing to a critical assessment of the potential role of AI in decision-making in highly sensitive areas.
    Keywords AI ; artificial intelligence ; assisted suicide ; euthanasia ; ethics committee ; synthetic data ; Electronic computers. Computer science ; QA75.5-76.95
    Subject code 170
    Language English
    Publishing date 2023-12-01T00:00:00Z
    Publisher Frontiers Media S.A.
    Document type Article ; Online
    Database BASE - Bielefeld Academic Search Engine (life sciences selection)

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  4. Article ; Online: Monkeypox, stigma and public health

    Julian W. März / Søren Holm / Nikola Biller-Andorno

    The Lancet Regional Health. Europe, Vol 23, Iss , Pp 100536- (2022)

    2022  

    Keywords Public aspects of medicine ; RA1-1270
    Language English
    Publishing date 2022-12-01T00:00:00Z
    Publisher Elsevier
    Document type Article ; Online
    Database BASE - Bielefeld Academic Search Engine (life sciences selection)

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  5. Article ; Online: First Insights into Barriers and Facilitators from the Perspective of Persons with Multiple Sclerosis

    Joelle Ott / Nikola Biller-Andorno / Andrea Glässel

    International Journal of Environmental Research and Public Health, Vol 19, Iss 10733, p

    A Multiple Case Study

    2022  Volume 10733

    Abstract: Multiple Sclerosis (MS) is a complex, lifelong disease. Its effects span across different areas of life and vary strongly. In Switzerland, there is an intense discussion on how to optimize quality of care and patient safety. Patients should be more ... ...

    Abstract Multiple Sclerosis (MS) is a complex, lifelong disease. Its effects span across different areas of life and vary strongly. In Switzerland, there is an intense discussion on how to optimize quality of care and patient safety. Patients should be more involved in the management of health care to improve the quality of care from the patient’s perspective and form a more comprehensive perspective. This multiple-case study explores the question of how persons with MS experience and describe functioning related barriers, facilitating factors, and ethically relevant conflicts. To address this from a comprehensive perspective, the MS core set of the International Classification for Functioning, Disability, and Health (ICF) is used as theoretical framework. To explore barriers, facilitators, and relevant ethical issues, different narrative sources were used for thematic analysis and ICF coding: (a) MS transcripts from DIPEx interviews and (b) an autobiographical book of persons living with MS. Insights that were meaningful for daily practice and education were identified: (a) understanding the importance of environmental circumstances based on narrative sources; (b) understanding the importance of a person’s individual life situation, and the ability to switch perspectives in the medical field; (c) respect for PwMS’ individuality in health care settings; (d) creating meaningful relationships for disease management and treatment, as well as building trust.
    Keywords multiple sclerosis ; patient perspective ; qualitative research methods ; thematic analysis ; ICF ; DIPEx ; Medicine ; R
    Subject code 360
    Language English
    Publishing date 2022-08-01T00:00:00Z
    Publisher MDPI AG
    Document type Article ; Online
    Database BASE - Bielefeld Academic Search Engine (life sciences selection)

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  6. Article ; Online: Ethics guidelines on COVID-19 triage—an emerging international consensus

    Susanne Joebges / Nikola Biller-Andorno

    Critical Care, Vol 24, Iss 1, Pp 1-

    2020  Volume 5

    Keywords COVID-19 ; Pandemic ; Triage ; Ethics ; Medical emergencies. Critical care. Intensive care. First aid ; RC86-88.9 ; covid19
    Language English
    Publishing date 2020-05-01T00:00:00Z
    Publisher BMC
    Document type Article ; Online
    Database BASE - Bielefeld Academic Search Engine (life sciences selection)

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  7. Article ; Online: Living with Parkinson’s disease and connected to the duodopa pump

    Yolanda María Chacón Gámez / Nikola Biller-Andorno

    Qualitative Research in Medicine & Healthcare, Vol 4, Iss

    A qualitative study

    2021  Volume 3

    Abstract: Parkinson’s Disease (PD) is a complex and heterogeneous disease that has a major impact on the lives of patients and their family caregivers. The duodopa pump is one of the treatments options for advanced PD. The experience of patients with this ... ...

    Abstract Parkinson’s Disease (PD) is a complex and heterogeneous disease that has a major impact on the lives of patients and their family caregivers. The duodopa pump is one of the treatments options for advanced PD. The experience of patients with this treatment is largely unexplored, however. This study is based on the experiences of patients with PD as well as their family caregivers using the pump. We take a multimodal approach that includes narrative semi-structured interviews and drawings. This methodology helps participants, particularly those with difficulty articulating themselves, express their experience with the disease and their perception of the treatment. We believe that the use of drawings complementing semi-structured interviews offers additional insights into the participants’ perception of PD and the pump. In this article we focus on the following topics: the participants’ perception of PD and the pump, the reasons for choosing the pump over alternatives, and the advantages and disadvantages of this treatment for patients and family caregivers. Our findings show that the participants consider PD as a complex and unpredictable disease that changed their lives and affect everyone differently, while the pump makes the disease less changeable and more manageable.
    Keywords Parkinson's disease ; duodopa pump ; patients' perception ; family caregivers' perception ; drawings ; Medicine (General) ; R5-920
    Language English
    Publishing date 2021-02-01T00:00:00Z
    Publisher PAGEPress Publications
    Document type Article ; Online
    Database BASE - Bielefeld Academic Search Engine (life sciences selection)

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  8. Article ; Online: Patient narratives – a still undervalued resource for healthcare improvement

    Giovanni Spitale / Andrea Glässel / Mirriam Tyebally-Fang / Corine Mouton Dorey / Nikola Biller-Andorno

    Swiss Medical Weekly, Vol 153, Iss

    2023  Volume 1

    Abstract: In recent years, patient narratives have attracted increasing attention as a valuable source of insights into the subjective experience of healthcare. This paper outlines a best-practice approach to the collection, analysis, and use of patient narratives, ...

    Abstract In recent years, patient narratives have attracted increasing attention as a valuable source of insights into the subjective experience of healthcare. This paper outlines a best-practice approach to the collection, analysis, and use of patient narratives, based on current literature and on the experience of developing the Swiss Database of Individual Patient Experiences (DIPEx). The DIPEx project aims to provide a systematic and methodologically rigorous collection of patient narratives on various health situations and topics. This paper presents and details the DIPEx approach as a current standard in the field, offering a comprehensive overview and discussing the potential uses and benefits of patient narratives: improve healthcare practice, empower patients and caregivers, help structure better communication in healthcare, and contribute to medical teaching and learning.
    Keywords Medicine ; R
    Language English
    Publishing date 2023-01-01T00:00:00Z
    Publisher SMW supporting association (Trägerverein Swiss Medical Weekly SMW)
    Document type Article ; Online
    Database BASE - Bielefeld Academic Search Engine (life sciences selection)

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  9. Article ; Online: Parkinson’s Disease and Deep Brain Stimulation Have an Impact on My Life

    Yolanda María Chacón Gámez / Florian Brugger / Nikola Biller-Andorno

    International Journal of Environmental Research and Public Health, Vol 18, Iss 9516, p

    A Multimodal Study on the Experiences of Patients and Family Caregivers

    2021  Volume 9516

    Abstract: Parkinson’s disease (PD) has a large impact on patients’ physical and mental health, which also greatly affects their family caregivers. Deep brain stimulation (DBS) has emerged as an effective treatment for PD, but different authors have expressed their ...

    Abstract Parkinson’s disease (PD) has a large impact on patients’ physical and mental health, which also greatly affects their family caregivers. Deep brain stimulation (DBS) has emerged as an effective treatment for PD, but different authors have expressed their concerns about the potential impact of DBS on personality and identity. Our study aims at better understanding how patients and family caregivers experience life with PD and DBS, the impact of both on their personal and social lives, and their perception of the changes that have occurred as a result of the disease and the treatment. Our study applies a multimodal approach by means of narrative semi-structured interviews and drawings. Seven principal themes have been identified: “everyone’s Parkinson’s is different”, “changing as a person during the disease”, “going through Parkinson’s together”, “DBS improved my life”, “I am treated with DBS but I have Parkinson’s still”, “DBS is not perfect”, and “being different after DBS”. PD is perceived as an unpredictable and heterogeneous disease that changes from person to person, as does the effect of DBS. While DBS side-effects may have an impact on patients’ personality, behavior, and self-perception, PD symptoms and drug side-effects also have a great impact on these aspects.
    Keywords deep brain stimulation ; drawings ; Parkinson’s disease ; qualitative methods ; patients’ and family caregivers’ narratives ; personality ; Medicine ; R
    Subject code 616
    Language English
    Publishing date 2021-09-01T00:00:00Z
    Publisher MDPI AG
    Document type Article ; Online
    Database BASE - Bielefeld Academic Search Engine (life sciences selection)

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  10. Article ; Online: Expert Views on COVAX and Equitable Global Access to COVID-19 Vaccines

    Tania Manriquez Roa / Felicitas Holzer / Florencia Luna / Nikola Biller-Andorno

    International Journal of Public Health, Vol

    2021  Volume 66

    Abstract: Objectives: We face the impossibility of having enough COVID-19 vaccines for everyone in the near future. This study aims to contribute to the debate on equitable global access to COVID-19 vaccines, tackling key ethical discussions and policy challenges ... ...

    Abstract Objectives: We face the impossibility of having enough COVID-19 vaccines for everyone in the near future. This study aims to contribute to the debate on equitable global access to COVID-19 vaccines, tackling key ethical discussions and policy challenges regarding early phases of COVAX, the global cooperation mechanism for supporting fair vaccine allocation.Methods: We conducted in-depth interviews with twelve experts and a literature research on academic articles, media sources and public statements. We built a data analysis matrix and conducted a thematic analysis.Results: Our findings show, first, that interviewed experts who hold different views on vaccine allocation, including moderate nationalist perspectives, agree on joining a global cooperation mechanism. Second, incentives to join COVAX vary greatly among countries. Third, specific barriers to COVAX emerged in the early implementation phase. And fourth, countries might be trapped in a zero-sum game regarding the global vaccine supply.Conclusion: We present findings that enrich analyses of early phases of COVAX (April 2020–21), we introduce three ethical discussions that provide a common ground for equitable access to COVID-19 vaccines, and we highlight policy challenges.
    Keywords ethics ; policies ; equitable global access ; COVAX ; COVID-19 vaccines ; expert views ; Public aspects of medicine ; RA1-1270
    Subject code 170
    Language English
    Publishing date 2021-12-01T00:00:00Z
    Publisher Frontiers Media S.A.
    Document type Article ; Online
    Database BASE - Bielefeld Academic Search Engine (life sciences selection)

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