The Experts below are selected from a list of 48438 Experts worldwide ranked by ideXlab platform
A Van Der Zeijden - One of the best experts on this subject based on the ideXlab platform.
-
The Patient Rights movement in Europe.
PharmacoEconomics, 2000Co-Authors: A Van Der ZeijdenAbstract:Phrases such as 'Patient centred healthcare' and 'putting Patients first' are becoming common in healthcare discussions in Western society. This makes Patient Rights an issue. Patient Rights are nothing but a modification of general human Rights. These have been established in several international documents, such as the main articles of the Standard Rules (resolution 48/96) of the United Nations and the Principles of the Rights of Patients in Europe, which includes a model for a Declaration on the Rights of Patients. What is involved in understanding a Patient in the Patient Rights movement? Patients, seen as people with a long term medical condition, have a relationship with illness which is different from that of healthy people. If we really wish to include this perspective in our discussions and dealings with Patients, we have to listen to the Patient and the Patients' organisations. This approach respects the right of the individual Patient to be treated as a human being, but is also about the right of their organisations to be involved in policy-making and decision-making processes at every level. In order to acquaint readers with the main actors in the Patient Rights movement in Europe, this article discusses the viewpoint of the chronically ill on healthcare, as well as the role of Patients' organisations in representing that viewpoint to the healthcare system, providers and society in general.
-
The Patient Rights movement in Europe.
PharmacoEconomics, 2000Co-Authors: A Van Der ZeijdenAbstract:Phrases such as ‘Patient centred healthcare’ and ‘putting Patients first’are becoming common in healthcare discussions in Western society. This makes Patient Rights an issue. Patient Rights are nothing but a modification of general human Rights. These have been established in several international documents, such as the main articles of the Standard Rules (resolution 48/96) of the United Nations and the Principles of the Rights of Patients in Europe, which includes a model for a Declaration on the Rights of Patients.
Rebecca F. Cady - One of the best experts on this subject based on the ideXlab platform.
-
A review of basic Patient Rights in psychiatric care.
JONA'S healthcare law ethics and regulation, 2010Co-Authors: Rebecca F. CadyAbstract:Although Patient Rights is a concept that all nurse managers need to be aware of, this concept often becomes confusing when applied to Patients undergoing psychiatric treatment. It is important for the nurse manager to understand the basic Rights that psychiatric Patients are entitled to, to best be able to help staff nurses under his/her supervision to protect these Rights. The nurse manager on a psychiatric unit often serves as a reference for staff nurses, and even for physicians, when questions regarding Patient Rights present themselves. The nurse manager should be certain to discuss these issues with the facility's legal and risk management team to be aware of particulars of the law of the state in which the facility is located, as state laws may differ somewhat in their treatment of psychiatric Patients.
Wolfgang H Oertel - One of the best experts on this subject based on the ideXlab platform.
-
data protection in biomaterial banks for parkinson s disease research the model of gepard gene bank parkinson s disease germany
Movement Disorders, 2007Co-Authors: Karla Eggert, Ullrich Wullner, Gisela Antony, Thomas Gasser, Bernd Janetzky, Christine Klein, Ludger Schols, Wolfgang H OertelAbstract:Parkinson's disease (PD) is the second most common neurodegenerative disease. Although 10 gene loci have been identified to cause a Parkinsonian syndrome, these loci account only for a minority of PD Patients. Large, systematic research programs are required to collect, store, and analyze DNA samples and clinical information to support further discovery of additional genetic components of PD or other movement disorders. Such programs facilitate research into the relationship between genotype and phenotype. The German Competence Network on Parkinson's disease (CNP) initiated the Gene Bank Parkinson's Disease Germany (GEPARD), providing an administrative and scientific infrastructure for the storage of DNA and clinical data that are electronically accessible and protective of Patient Rights. In this article, we offer guidance on how to establish a framework for a clinical genetic data and DNA bank, and describe GEPARD as a model that may be useful to other local, national, and international research groups developing similar programs. © 2006 Movement Disorder Society
-
data protection in biomaterial banks for parkinson s disease research the model of gepard gene bank parkinson s disease germany
Movement Disorders, 2007Co-Authors: Karla Eggert, Ullrich Wullner, Gisela Antony, Thomas Gasser, Bernd Janetzky, Christine Klein, Ludger Schols, Wolfgang H OertelAbstract:Parkinson's disease (PD) is the second most common neurodegenerative disease. Although 10 gene loci have been identified to cause a Parkinsonian syndrome, these loci account only for a minority of PD Patients. Large, systematic research programs are required to collect, store, and analyze DNA samples and clinical information to support further discovery of additional genetic components of PD or other movement disorders. Such programs facilitate research into the relationship between genotype and phenotype. The German Competence Network on Parkinson's disease (CNP) initiated the Gene Bank Parkinson's Disease Germany (GEPARD), providing an administrative and scientific infrastructure for the storage of DNA and clinical data that are electronically accessible and protective of Patient Rights. In this article, we offer guidance on how to establish a framework for a clinical genetic data and DNA bank, and describe GEPARD as a model that may be useful to other local, national, and international research groups developing similar programs.
Henry T Greely - One of the best experts on this subject based on the ideXlab platform.
-
clinical genomics big data and electronic medical records reconciling Patient Rights with research when privacy and science collide
Journal of Leukocyte Biology, 2017Co-Authors: Jennifer Kulynych, Henry T GreelyAbstract:Widespread use of medical records for research, without consent, attracts little scrutiny compared to biospecimen research, where concerns about genomic privacy prompted recent federal proposals to mandate consent. This paper explores an important consequence of the proliferation of electronic health records (EHRs) in this permissive atmosphere: with the advent of clinical gene sequencing, EHR-based secondary research poses genetic privacy risks akin to those of biospecimen research, yet regulators still permit researchers to call gene sequence data 'de-identified', removing such data from the protection of the federal Privacy Rule and federal human subjects regulations. Medical centers and other providers seeking to offer genomic 'personalized medicine' now confront the problem of governing the secondary use of clinical genomic data as privacy risks escalate. We argue that regulators should no longer permit HIPAA-covered entities to treat dense genomic data as de-identified health information. Even with this step, the Privacy Rule would still permit disclosure of clinical genomic data for research, without consent, under a data use agreement, so we also urge that providers give Patients specific notice before disclosing clinical genomic data for research, permitting (where possible) some degree of choice and control. To aid providers who offer clinical gene sequencing, we suggest both general approaches and specific actions to reconcile Patients' Rights and interests with genomic research.
James Irlam - One of the best experts on this subject based on the ideXlab platform.
-
medical students experiences of professional lapses and Patient Rights abuses in a south african health sciences faculty
Academic Medicine, 2011Co-Authors: Lauraine Vivian, Claudia S Naidu, Mpoe Johannah Keikelame, James IrlamAbstract:Purpose To elicit South African medical students’ experiences of witnessing Patient Rights abuses and professional lapses during their clinical training in order to inform an appropriate and effective response.
