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Ethical Issues in Community and Patient Stakeholder–Engaged Health Research

Author: Emily E. Anderson

Publisher: Springer Nature

Published: 2023-10-31

Total Pages: 326

ISBN-13: 3031403797

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This book provides in-depth analyses of a wide range of topics surrounding ethical issues in community and patient stakeholder–engaged health research, and highlights where consensus exists, is emerging, or remains elusive. Topics in this book cover the history of stakeholder engagement in health research; how codes of ethics and regulations have (or have not) addressed stakeholder engagement; how to promote equitable collaboration; the ethical perspectives of different stakeholders; and the unique challenges posed by stakeholder- engaged research to the protection of human research participants and the research ethics review process. The book includes discussion of unique issues that arise in stakeholder engagement relevant to different populations, settings, and research designs. This book is relevant for anyone with a role or interest in stakeholder-engaged research, including patient and community research partners; academic researchers; research ethics scholars and educators; and funders.

Book Synopsis Ethical Issues in Community and Patient Stakeholder–Engaged Health Research by : Emily E. Anderson

Download or read book Ethical Issues in Community and Patient Stakeholder–Engaged Health Research written by Emily E. Anderson and published by Springer Nature. This book was released on 2023-10-31 with total page 326 pages. Available in PDF, EPUB and Kindle. Book excerpt: This book provides in-depth analyses of a wide range of topics surrounding ethical issues in community and patient stakeholder–engaged health research, and highlights where consensus exists, is emerging, or remains elusive. Topics in this book cover the history of stakeholder engagement in health research; how codes of ethics and regulations have (or have not) addressed stakeholder engagement; how to promote equitable collaboration; the ethical perspectives of different stakeholders; and the unique challenges posed by stakeholder- engaged research to the protection of human research participants and the research ethics review process. The book includes discussion of unique issues that arise in stakeholder engagement relevant to different populations, settings, and research designs. This book is relevant for anyone with a role or interest in stakeholder-engaged research, including patient and community research partners; academic researchers; research ethics scholars and educators; and funders.

The Ethics and Politics of Community Engagement in Global Health Research

Author: Lindsey Reynolds

Publisher: Routledge

Published: 2020-06-09

Total Pages: 201

ISBN-13: 1000057879

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Drawing on a growing consensus about the importance of community representation and participation for ethical research, community engagement has become a central component of scientific research, policy-making, ethical review, and technology design. The diversity of actors involved in large-scale global health research collaborations and the broader ‘background conditions’ of global inequality and injustice that frame the field have led some researchers, funders, and policy-makers to conclude that community engagement is nothing less than a moral imperative in global health research. Rather than taking community engagement as a given, the contributions in this edited volume highlight how processes of community engagement are shaped by particular local histories and social and political dynamics, and by the complex social relations between different actors involved in global public health research. By interrogating the everyday politics and practices of engagement across diverse contexts, the book pushes conversations around engagement and participation beyond their conventional framings. In doing so, it raises radical questions about knowledge, power, expertise, authority, representation, inclusivity, and ethics and to make recommendations for more transformative, inclusive, and meaningful community engagement. This book was originally published as a special issue of the Critical Public Health journal.

Book Synopsis The Ethics and Politics of Community Engagement in Global Health Research by : Lindsey Reynolds

Download or read book The Ethics and Politics of Community Engagement in Global Health Research written by Lindsey Reynolds and published by Routledge. This book was released on 2020-06-09 with total page 201 pages. Available in PDF, EPUB and Kindle. Book excerpt: Drawing on a growing consensus about the importance of community representation and participation for ethical research, community engagement has become a central component of scientific research, policy-making, ethical review, and technology design. The diversity of actors involved in large-scale global health research collaborations and the broader ‘background conditions’ of global inequality and injustice that frame the field have led some researchers, funders, and policy-makers to conclude that community engagement is nothing less than a moral imperative in global health research. Rather than taking community engagement as a given, the contributions in this edited volume highlight how processes of community engagement are shaped by particular local histories and social and political dynamics, and by the complex social relations between different actors involved in global public health research. By interrogating the everyday politics and practices of engagement across diverse contexts, the book pushes conversations around engagement and participation beyond their conventional framings. In doing so, it raises radical questions about knowledge, power, expertise, authority, representation, inclusivity, and ethics and to make recommendations for more transformative, inclusive, and meaningful community engagement. This book was originally published as a special issue of the Critical Public Health journal.

Stakeholders and Ethics in Healthcare

Author: Lisa A. Martinelli

Publisher: Routledge

Published: 2022-03-20

Total Pages: 267

ISBN-13: 1000545903

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This ground-breaking book uses organizational ethics and stakeholder theory to explore the ethical accountability of leadership in healthcare organizations to their distinct vulnerable stakeholder communities. The book begins with a discussion of the moral agency of healthcare organizations and introduces stakeholder theory. It then looks at key ethical challenges in relation to the confidentiality and privacy of healthcare data, before turning to child health and interventions around issues such as obesity, maltreatment, and parenting. The book ends by focusing on ethics of care in relation to older people and people with disabilities. An insightful contribution to thinking about ethics for contemporary healthcare management and leadership, this interdisciplinary book is of interest to readers with a background in healthcare, business and management, law, bioethics, and theology.

Book Synopsis Stakeholders and Ethics in Healthcare by : Lisa A. Martinelli

Download or read book Stakeholders and Ethics in Healthcare written by Lisa A. Martinelli and published by Routledge. This book was released on 2022-03-20 with total page 267 pages. Available in PDF, EPUB and Kindle. Book excerpt: This ground-breaking book uses organizational ethics and stakeholder theory to explore the ethical accountability of leadership in healthcare organizations to their distinct vulnerable stakeholder communities. The book begins with a discussion of the moral agency of healthcare organizations and introduces stakeholder theory. It then looks at key ethical challenges in relation to the confidentiality and privacy of healthcare data, before turning to child health and interventions around issues such as obesity, maltreatment, and parenting. The book ends by focusing on ethics of care in relation to older people and people with disabilities. An insightful contribution to thinking about ethics for contemporary healthcare management and leadership, this interdisciplinary book is of interest to readers with a background in healthcare, business and management, law, bioethics, and theology.

Human Challenge Studies in Endemic Settings

Author: Euzebiusz Jamrozik

Publisher: Springer Nature

Published: 2020

Total Pages: 145

ISBN-13: 3030414809

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This open access book provides an extensive review of ethical and regulatory issues related to human infection challenge studies, with a particular focus on the expansion of this type of research into endemic settings and/or low- and middle-income countries (LMICs). Human challenge studies (HCS) involve the intentional infection of research participants, and this type of research is rapidly increasing in frequency worldwide. HCS are widely considered to be an especially promising approach to vaccine development, including for pathogens endemic to LMICs. However, challenge studies are sometimes controversial and raise complex ethical issues, some of which are especially salient in endemic and/or LMIC settings. Informed by qualitative interviews with experts in infectious diseases and bioethics, this book highlights areas of ethical consensus and controversy concerning this kind of research. As the first volume to focus on ethical issues associated with human challenge studies, it sets the agenda for further work in this important area of global health research; contributes to current debates in research ethics; and aims to inform regulatory policy and research practice. Insofar as it focuses on HCS in (endemic) settings where diseases are present and/or widespread, much of the analysis provided here is directly relevant to HCS involving pandemic diseases including COVID19.

Book Synopsis Human Challenge Studies in Endemic Settings by : Euzebiusz Jamrozik

Download or read book Human Challenge Studies in Endemic Settings written by Euzebiusz Jamrozik and published by Springer Nature. This book was released on 2020 with total page 145 pages. Available in PDF, EPUB and Kindle. Book excerpt: This open access book provides an extensive review of ethical and regulatory issues related to human infection challenge studies, with a particular focus on the expansion of this type of research into endemic settings and/or low- and middle-income countries (LMICs). Human challenge studies (HCS) involve the intentional infection of research participants, and this type of research is rapidly increasing in frequency worldwide. HCS are widely considered to be an especially promising approach to vaccine development, including for pathogens endemic to LMICs. However, challenge studies are sometimes controversial and raise complex ethical issues, some of which are especially salient in endemic and/or LMIC settings. Informed by qualitative interviews with experts in infectious diseases and bioethics, this book highlights areas of ethical consensus and controversy concerning this kind of research. As the first volume to focus on ethical issues associated with human challenge studies, it sets the agenda for further work in this important area of global health research; contributes to current debates in research ethics; and aims to inform regulatory policy and research practice. Insofar as it focuses on HCS in (endemic) settings where diseases are present and/or widespread, much of the analysis provided here is directly relevant to HCS involving pandemic diseases including COVID19.

International Ethical Guidelines for Health-Related Research Involving Humans

Author: Council for International Organizations of Medical Sciences (CIOMS)

Publisher: World Health Organization

Published: 2017-01-31

Total Pages: 0

ISBN-13: 9789290360889

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"In the new 2016 version of the ethical guidelines, CIOMS provides answers to a number of pressing issues in research ethics. The Council does so by stressing the need for research having scientific and social value, by providing special guidelines for health-related research in low-resource settings, by detailing the provisions for involving vulnerable groups in research and for describing under what conditions biological samples and health-related data can be used for research."--Page 4 de la couverture.

Book Synopsis International Ethical Guidelines for Health-Related Research Involving Humans by : Council for International Organizations of Medical Sciences (CIOMS)

Download or read book International Ethical Guidelines for Health-Related Research Involving Humans written by Council for International Organizations of Medical Sciences (CIOMS) and published by World Health Organization. This book was released on 2017-01-31 with total page 0 pages. Available in PDF, EPUB and Kindle. Book excerpt: "In the new 2016 version of the ethical guidelines, CIOMS provides answers to a number of pressing issues in research ethics. The Council does so by stressing the need for research having scientific and social value, by providing special guidelines for health-related research in low-resource settings, by detailing the provisions for involving vulnerable groups in research and for describing under what conditions biological samples and health-related data can be used for research."--Page 4 de la couverture.

Community-based Participatory Research

Author: United States. Agency for Healthcare Research and Quality

Publisher:

Published: 2004

Total Pages: 8

ISBN-13:

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Book Synopsis Community-based Participatory Research by : United States. Agency for Healthcare Research and Quality

Download or read book Community-based Participatory Research written by United States. Agency for Healthcare Research and Quality and published by . This book was released on 2004 with total page 8 pages. Available in PDF, EPUB and Kindle. Book excerpt:

Ethics in Participatory Research for Health and Social Well-Being

Author: Sarah Banks

Publisher: Routledge

Published: 2018-08-06

Total Pages: 248

ISBN-13: 1351605348

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Participatory research is well-established as an approach involving people with a direct interest in, or experience of, the issue being studied in carrying out research. However, it raises unique and challenging ethical issues. Traditional concerns with respect for the rights to confidentiality, consent, privacy and protection of ‘research informants’ do not translate easily into participatory research. Boundaries between researchers and those researched are often blurred; research trajectories may be emergent and unpredictable; and major ethical issues revolve around partnership, power, equality and respect for diverse knowledges. The book introduces the key ethical issues in participatory research, drawing on ethical theory and relevant literature before presenting seven substantive chapters, each on a different theme, such as power, ownership, confidentiality and boundaries. The chapters feature an introductory overview of the topic with reference to the literature, followed by four real-life case examples written by participatory researchers and short commentaries on each case. Drawn from around the world (from Denmark to Tanzania), the cases illustrate a range of ethical issues, outlining how they were handled and the reflections and feelings of the contributors. Focusing on developing ethical awareness, confidence and courage to act in ethically challenging situations in everyday research practice, this book is an invaluable resource for all participatory researchers.

Book Synopsis Ethics in Participatory Research for Health and Social Well-Being by : Sarah Banks

Download or read book Ethics in Participatory Research for Health and Social Well-Being written by Sarah Banks and published by Routledge. This book was released on 2018-08-06 with total page 248 pages. Available in PDF, EPUB and Kindle. Book excerpt: Participatory research is well-established as an approach involving people with a direct interest in, or experience of, the issue being studied in carrying out research. However, it raises unique and challenging ethical issues. Traditional concerns with respect for the rights to confidentiality, consent, privacy and protection of ‘research informants’ do not translate easily into participatory research. Boundaries between researchers and those researched are often blurred; research trajectories may be emergent and unpredictable; and major ethical issues revolve around partnership, power, equality and respect for diverse knowledges. The book introduces the key ethical issues in participatory research, drawing on ethical theory and relevant literature before presenting seven substantive chapters, each on a different theme, such as power, ownership, confidentiality and boundaries. The chapters feature an introductory overview of the topic with reference to the literature, followed by four real-life case examples written by participatory researchers and short commentaries on each case. Drawn from around the world (from Denmark to Tanzania), the cases illustrate a range of ethical issues, outlining how they were handled and the reflections and feelings of the contributors. Focusing on developing ethical awareness, confidence and courage to act in ethically challenging situations in everyday research practice, this book is an invaluable resource for all participatory researchers.

Ethical Challenges in Study Design and Informed Consent for Health Research in Resource-poor Settings

Author: Patricia A. Marshall

Publisher: World Health Organization

Published: 2007

Total Pages: 89

ISBN-13: 9241563389

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This review considers ethical challenges to research design and informed consent in biomedical and behavioral studies conducted in resource-poor settings. A review of the literature explores relevant social, cultural, and ethical issues in the conduct of biomedical and social health research in developing countries. Ten case vignettes illustrate ethical challenges that arise in international research with culturally diverse populations. Recommendations for researchers and policy-makers concerned about ethical practices in multinational studies conducted in resource-poor settings are also listed.

Book Synopsis Ethical Challenges in Study Design and Informed Consent for Health Research in Resource-poor Settings by : Patricia A. Marshall

Download or read book Ethical Challenges in Study Design and Informed Consent for Health Research in Resource-poor Settings written by Patricia A. Marshall and published by World Health Organization. This book was released on 2007 with total page 89 pages. Available in PDF, EPUB and Kindle. Book excerpt: This review considers ethical challenges to research design and informed consent in biomedical and behavioral studies conducted in resource-poor settings. A review of the literature explores relevant social, cultural, and ethical issues in the conduct of biomedical and social health research in developing countries. Ten case vignettes illustrate ethical challenges that arise in international research with culturally diverse populations. Recommendations for researchers and policy-makers concerned about ethical practices in multinational studies conducted in resource-poor settings are also listed.

Participatory Health Through Social Media

Author: Shabbir Syed-Abdul

Publisher: Academic Press

Published: 2016-06-10

Total Pages: 162

ISBN-13: 0128095482

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Participatory Health through Social Media explores how traditional models of healthcare can be delivered differently through social media and online games, and how these technologies are changing the relationship between patients and healthcare professionals, as well as their impact on health behavior change. The book also examines how the hospitals, public health authorities, and inspectorates are currently using social media to facilitate both information distribution and collection. Also looks into the opportunities and risks to record and analyze epidemiologically relevant data retrieved from the Internet, social media, sensor data, and other digital sources. The book encompasses topics such as patient empowerment, gamification and social games, and the relationships between social media, health behavior change, and health communication crisis during epidemics. Additionally, the book analyzes the possibilities of big data generated through social media. Authored by IMIA Social Media working group, this book is a valuable resource for healthcare researchers and professionals, as well as clinicians interested in using new media as part of their practice or research. Presents a multidisciplinary point of view providing the readers with a broader perspective Brings the latest case studies and technological advances in the area, supported by an active international community of members who actively work in this area Endorsed by IMIA Social Media workgroup, guaranteeing trustable information from the most relevant experts on the subject Examines how the hospitals, public health authorities, and inspectorates are currently using social media to facilitate both information distribution and collection

Book Synopsis Participatory Health Through Social Media by : Shabbir Syed-Abdul

Download or read book Participatory Health Through Social Media written by Shabbir Syed-Abdul and published by Academic Press. This book was released on 2016-06-10 with total page 162 pages. Available in PDF, EPUB and Kindle. Book excerpt: Participatory Health through Social Media explores how traditional models of healthcare can be delivered differently through social media and online games, and how these technologies are changing the relationship between patients and healthcare professionals, as well as their impact on health behavior change. The book also examines how the hospitals, public health authorities, and inspectorates are currently using social media to facilitate both information distribution and collection. Also looks into the opportunities and risks to record and analyze epidemiologically relevant data retrieved from the Internet, social media, sensor data, and other digital sources. The book encompasses topics such as patient empowerment, gamification and social games, and the relationships between social media, health behavior change, and health communication crisis during epidemics. Additionally, the book analyzes the possibilities of big data generated through social media. Authored by IMIA Social Media working group, this book is a valuable resource for healthcare researchers and professionals, as well as clinicians interested in using new media as part of their practice or research. Presents a multidisciplinary point of view providing the readers with a broader perspective Brings the latest case studies and technological advances in the area, supported by an active international community of members who actively work in this area Endorsed by IMIA Social Media workgroup, guaranteeing trustable information from the most relevant experts on the subject Examines how the hospitals, public health authorities, and inspectorates are currently using social media to facilitate both information distribution and collection

Ethics and Research with Children

Author: Eric Kodish

Publisher: Oxford University Press

Published: 2018-11-26

Total Pages: 408

ISBN-13: 0190671939

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Fundamental questions about the morality of pediatric medical research persist despite years of debate and the establishment of strict codes of ethics. Is it ever permissible to use a child as a means to an end? How much authority should parents have over decisions about research involving their children? Should children or their parents be paid for participation in research? Most importantly, how can the twin goals of access to the benefits of clinical research and protection from research risk be reconciled? Promoting more thoughtful attention to the complex ethical problems that arise when research involves children, this fully updated new edition of Ethics and Research with Children presents 14 case studies featuring some of the most challenging and fascinating ethical dilemmas in pediatric research. Each chapter begins with a unique case vignette, followed by rich discussion and incisive ethical analysis. Chapters represent a host of current controversies and are contributed by leading scholars from a variety of disciplines that must grapple with how to best protect children from research risk while driving innovation in the fight against childhood diseases. Chapters end with questions for discussion, providing faculty and students with accessible starting points from which to explore more in depth the thorny issues that are raised. In the final chapter, the editors provide a synthesis and summary that serve as a capstone and companion to the case-based chapters. Unique in its specific focus on research, Ethics and Research with Children provides a balanced and thorough account of the enduring dilemmas that arise when children become research subjects, and will be essential reading for those involved with pediatric research in any context.

Book Synopsis Ethics and Research with Children by : Eric Kodish

Download or read book Ethics and Research with Children written by Eric Kodish and published by Oxford University Press. This book was released on 2018-11-26 with total page 408 pages. Available in PDF, EPUB and Kindle. Book excerpt: Fundamental questions about the morality of pediatric medical research persist despite years of debate and the establishment of strict codes of ethics. Is it ever permissible to use a child as a means to an end? How much authority should parents have over decisions about research involving their children? Should children or their parents be paid for participation in research? Most importantly, how can the twin goals of access to the benefits of clinical research and protection from research risk be reconciled? Promoting more thoughtful attention to the complex ethical problems that arise when research involves children, this fully updated new edition of Ethics and Research with Children presents 14 case studies featuring some of the most challenging and fascinating ethical dilemmas in pediatric research. Each chapter begins with a unique case vignette, followed by rich discussion and incisive ethical analysis. Chapters represent a host of current controversies and are contributed by leading scholars from a variety of disciplines that must grapple with how to best protect children from research risk while driving innovation in the fight against childhood diseases. Chapters end with questions for discussion, providing faculty and students with accessible starting points from which to explore more in depth the thorny issues that are raised. In the final chapter, the editors provide a synthesis and summary that serve as a capstone and companion to the case-based chapters. Unique in its specific focus on research, Ethics and Research with Children provides a balanced and thorough account of the enduring dilemmas that arise when children become research subjects, and will be essential reading for those involved with pediatric research in any context.