Keywords
patient engagementresearch-based artistic work
experiential knowledge
patient empowerment
patient-oriented research
patient-centered outcomes
Ethics
BJ1-1725
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Engaging patients in research conduct and agenda setting is increasingly considered as an ethical imperative, and a way to transcend views of patients as passive subjects by fostering their empowerment. However, patient engagement in research (PER) is still an emerging approach with debated definitional and operational frameworks. This song addresses the sometimes difficult encounter and elusive mutual understanding between researchers and patients. “What is PER?” is an impressionistic illustration of the challenges and issues that can be found in the universe of patient engagement in research.Date
2018-07-01Type
ArticleIdentifier
oai:doaj.org/article:16548d2b05df460c96de37b3736f419c2561-4665
https://doaj.org/article/16548d2b05df460c96de37b3736f419c
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“What Is PER?” Patient Engagement in Research as a HitBélisle-Pipon, Jean-Christophe; Del Grande, Claudio; Rouleau, Geneviève (Programmes de bioéthique, École de santé publique de l'Université de MontréalÉrudit, 2018)Engaging patients in research conduct and agenda setting is increasingly considered as an ethical imperative, and a way to transcend views of patients as passive subjects by fostering their empowerment. However, patient engagement in research (PER) is still an emerging approach with debated definitional and operational frameworks. This song addresses the sometimes difficult encounter and elusive mutual understanding between researchers and patients. “What is PER?” is an impressionistic illustration of the challenges and issues that can be found in the universe of patient engagement in research.
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Do Patients Know How to Use Sublingual Glyceryl Trinitrate?HENMAN, MARTIN; Deasy, Evelyn; Kirke, Ciara; Naddy, Helen (2018-07-06)PUBLISHED
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[Autonomy and practical identity. Cornerstones to ethical physician behavior].Colt, Henri (eScholarship, University of California, 2006-01-01)Three frequent problems of daily medical practice are analyzed: (1) a physician's perceived obligation to provide medical services regardless of whether one's health care institution provides monetary compensation for the medical act, (2) increasing pressures to obtain informed consent in a national context where paternalistic physician-patient interactions have been customary, and (3) a physician's professional responsibility to offer internationally recognized standard of care even if this means allocating expensive tertiary healthcare resources to a small number of patients in spite of one's knowledge that national governments are unable to provide primary care to millions of their citizens. These problems are discussed from the point of view of the ethical principle of respect for patient autonomy. Potential limiting factors (cultural, financial, religious or disease-related influences) on autonomy of patients and doctors are identified. The functions of patient autonomy in the framework of four different patient-doctor interaction models (paternalist, informative, interpretative and deliberatibe) are described. Physician leaders, health care institutions, and professional organizations are responsible for creating an environment in which doctors can discuss ethical issues as comfortably and as frequently as they discuss biological matters. Health care providers should do their best to recover the human side of medical practice which, undoubtedly, would create a greater likelihood that appropriate decisions will be made when facing complex ethical dilemmas.