Ethical Issues in Community and Patient Stakeholder–Engaged Health Research PDF Download

Author: Emily E. Anderson
Publisher: Springer Nature
ISBN: 3031403797
Category : Philosophy
Languages : en
Pages : 326

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Book Description
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.

Author: Lindsey Reynolds
Publisher: Routledge
ISBN: 1000057879
Category : Medical
Languages : en
Pages : 201

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Book Description
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.

Author: National Academies of Sciences, Engineering, and Medicine
Publisher: National Academies Press
ISBN: 0309378125
Category : Science
Languages : en
Pages : 102

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Book Description
Sharing research data on public health issues can promote expanded scientific inquiry and has the potential to advance improvements in public health. Although sharing data is the norm in some research fields, sharing of data in public health is not as firmly established. In March 2015, the National Research Council organized an international conference in Stellenbosch, South Africa, to explore the benefits of and barriers to sharing research data within the African context. The workshop brought together public health researchers and epidemiologists primarily from the African continent, along with selected international experts, to talk about the benefits and challenges of sharing data to improve public health, and to discuss potential actions to guide future work related to public health research data sharing. Sharing Research Data to Improve Public Health in Africa summarizes the presentations and discussions from this workshop.

Author: Euzebiusz Jamrozik
Publisher: Springer Nature
ISBN: 3030414809
Category : Bioethics
Languages : en
Pages : 145

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Book Description
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.

Author: Council for International Organizations of Medical Sciences (CIOMS)
Publisher: World Health Organization
ISBN: 9789290360889
Category : Bioethics
Languages : en
Pages : 0

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Book Description
"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.

Author: Agency for Healthcare Research and Quality/AHRQ
Publisher: Government Printing Office
ISBN: 1587634333
Category : Medical
Languages : en
Pages : 396

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Book Description
This User’s Guide is intended to support the design, implementation, analysis, interpretation, and quality evaluation of registries created to increase understanding of patient outcomes. For the purposes of this guide, a patient registry is an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves one or more predetermined scientific, clinical, or policy purposes. A registry database is a file (or files) derived from the registry. Although registries can serve many purposes, this guide focuses on registries created for one or more of the following purposes: to describe the natural history of disease, to determine clinical effectiveness or cost-effectiveness of health care products and services, to measure or monitor safety and harm, and/or to measure quality of care. Registries are classified according to how their populations are defined. For example, product registries include patients who have been exposed to biopharmaceutical products or medical devices. Health services registries consist of patients who have had a common procedure, clinical encounter, or hospitalization. Disease or condition registries are defined by patients having the same diagnosis, such as cystic fibrosis or heart failure. The User’s Guide was created by researchers affiliated with AHRQ’s Effective Health Care Program, particularly those who participated in AHRQ’s DEcIDE (Developing Evidence to Inform Decisions About Effectiveness) program. Chapters were subject to multiple internal and external independent reviews.

Author: Sarah Banks
Publisher: Routledge
ISBN: 1351605348
Category : Social Science
Languages : en
Pages : 248

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Book Description
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.

Author: Patricia A. Marshall
Publisher: World Health Organization
ISBN: 9241563389
Category : Medical
Languages : en
Pages : 89

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Book Description
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.

Author: Institute of Medicine
Publisher: National Academies Press
ISBN: 0309036437
Category : Medical
Languages : en
Pages : 580

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Book Description
"[This book is] the most authoritative assessment of the advantages and disadvantages of recent trends toward the commercialization of health care," says Robert Pear of The New York Times. This major study by the Institute of Medicine examines virtually all aspects of for-profit health care in the United States, including the quality and availability of health care, the cost of medical care, access to financial capital, implications for education and research, and the fiduciary role of the physician. In addition to the report, the book contains 15 papers by experts in the field of for-profit health care covering a broad range of topicsâ€"from trends in the growth of major investor-owned hospital companies to the ethical issues in for-profit health care. "The report makes a lasting contribution to the health policy literature." â€"Journal of Health Politics, Policy and Law.

Author: Shabbir Syed-Abdul
Publisher: Academic Press
ISBN: 0128095482
Category : Medical
Languages : en
Pages : 162

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Book Description
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