Pub Date : 2019-02-01DOI: 10.1093/med/9780198796039.003.0005
T. Wijeratne, E. Low, C. Neil
The physician–industry relationship is a topic that generates keen interest among physicians globally. This chapter reviews the potential risks and benefits of such relationships in patient care. Physicians must adhere to strict professional standards and strong ethical principles, with the prime interest of offering the best possible care for the patient while using the resources available through pharmaceutical industry partnerships. One must never cross the boundaries in this complex interaction; physicians should continue to be the best advocates for patients, and not the pharmaceutical industry. Other aspects of relationships between the pharmaceutical industry and doctors’, trainees’, and residents’ perspectives in the industry, essential drug policy solutions in Sri Lanka, and several key points from the Australian Medical Association’s position statement on medical practitioner’s relationships with industries, are also discussed.
{"title":"Physician autonomy and the pharmaceutical industry","authors":"T. Wijeratne, E. Low, C. Neil","doi":"10.1093/med/9780198796039.003.0005","DOIUrl":"https://doi.org/10.1093/med/9780198796039.003.0005","url":null,"abstract":"The physician–industry relationship is a topic that generates keen interest among physicians globally. This chapter reviews the potential risks and benefits of such relationships in patient care. Physicians must adhere to strict professional standards and strong ethical principles, with the prime interest of offering the best possible care for the patient while using the resources available through pharmaceutical industry partnerships. One must never cross the boundaries in this complex interaction; physicians should continue to be the best advocates for patients, and not the pharmaceutical industry. Other aspects of relationships between the pharmaceutical industry and doctors’, trainees’, and residents’ perspectives in the industry, essential drug policy solutions in Sri Lanka, and several key points from the Australian Medical Association’s position statement on medical practitioner’s relationships with industries, are also discussed.","PeriodicalId":383831,"journal":{"name":"Advocacy in Neurology","volume":"1 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2019-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"117009585","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2019-02-01DOI: 10.1093/MED/9780198796039.003.0008
M. Wasay
The healthcare system has changed substantially in recent decades. Governments and business organizations have become important stakeholders in the healthcare system. The role of the doctor has also been modified over the period of the past 40–50 years. Patients are seen and taken care by a team of healthcare experts in a multidisciplinary healthcare model. Managed care is a newer health model which is run by business experts. The doctor’s role in this model is very limited. The social healthcare model is most popular in European countries. It is largely supported by taxes and managed by government organizations. This chapter discusses the emerging and future role of doctors as leaders of healthcare systems, in patient support groups, and as advocates for patients. Medical doctors have to learn and adapt to these roles by training and skills development.
{"title":"Perspectives on advocacy of medical doctors","authors":"M. Wasay","doi":"10.1093/MED/9780198796039.003.0008","DOIUrl":"https://doi.org/10.1093/MED/9780198796039.003.0008","url":null,"abstract":"The healthcare system has changed substantially in recent decades. Governments and business organizations have become important stakeholders in the healthcare system. The role of the doctor has also been modified over the period of the past 40–50 years. Patients are seen and taken care by a team of healthcare experts in a multidisciplinary healthcare model. Managed care is a newer health model which is run by business experts. The doctor’s role in this model is very limited. The social healthcare model is most popular in European countries. It is largely supported by taxes and managed by government organizations. This chapter discusses the emerging and future role of doctors as leaders of healthcare systems, in patient support groups, and as advocates for patients. Medical doctors have to learn and adapt to these roles by training and skills development.","PeriodicalId":383831,"journal":{"name":"Advocacy in Neurology","volume":"41 6 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2019-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"121178262","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2019-02-01DOI: 10.1093/MED/9780198796039.003.0016
R. Pichler
SOS Children’s Village had engaged in advocacy in the very early days (1950s) but later began to focus on service provision, largely disconnecting it from the professional discourse. By the late 1990s, the organization expanded into over 100 countries. Despite doing excellent work as service provider, the organization felt the threat of being of little relevance, losing support and recognition. The organization had to rediscover how to engage in advocacy as integral part of its mission. Missing elements in the UN Convention on the Rights of the Child offered the chance to convince internal and external public of the need of SOS Children’s Villages to engage in advocacy. Today, SOS Children’s Villages are an essential advocate for 550,000 children directly and 220 million children indirectly.
{"title":"SOS Children’s Villages: Rediscovering advocacy to increase relevance and impact. A high-level case study","authors":"R. Pichler","doi":"10.1093/MED/9780198796039.003.0016","DOIUrl":"https://doi.org/10.1093/MED/9780198796039.003.0016","url":null,"abstract":"SOS Children’s Village had engaged in advocacy in the very early days (1950s) but later began to focus on service provision, largely disconnecting it from the professional discourse. By the late 1990s, the organization expanded into over 100 countries. Despite doing excellent work as service provider, the organization felt the threat of being of little relevance, losing support and recognition. The organization had to rediscover how to engage in advocacy as integral part of its mission. Missing elements in the UN Convention on the Rights of the Child offered the chance to convince internal and external public of the need of SOS Children’s Villages to engage in advocacy. Today, SOS Children’s Villages are an essential advocate for 550,000 children directly and 220 million children indirectly.","PeriodicalId":383831,"journal":{"name":"Advocacy in Neurology","volume":"18 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2019-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"131762544","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2019-02-01DOI: 10.1093/MED/9780198796039.003.0026
F. Zimprich
Patients with rare diseases face several common problems caused by the rarity of their diseases. Among many other issues, these include the often long-delayed diagnosis, the limited knowledge and dissemination of knowledge on the diseases, the lack of specific therapies, and the inadequacies of healthcare systems to deal with rare, complex disorders. In recent years patient advocacy organization have emerged for many different rare diseases as a consequence of these unmet needs. They have started to address these issues by many different advocacy actions such as education, political advocacy, and measures to facilitate research and drug development. Successful examples have shown that such efforts can bring real advances for some rare diseases.
{"title":"Advocating for orphan diseases in neurology","authors":"F. Zimprich","doi":"10.1093/MED/9780198796039.003.0026","DOIUrl":"https://doi.org/10.1093/MED/9780198796039.003.0026","url":null,"abstract":"Patients with rare diseases face several common problems caused by the rarity of their diseases. Among many other issues, these include the often long-delayed diagnosis, the limited knowledge and dissemination of knowledge on the diseases, the lack of specific therapies, and the inadequacies of healthcare systems to deal with rare, complex disorders. In recent years patient advocacy organization have emerged for many different rare diseases as a consequence of these unmet needs. They have started to address these issues by many different advocacy actions such as education, political advocacy, and measures to facilitate research and drug development. Successful examples have shown that such efforts can bring real advances for some rare diseases.","PeriodicalId":383831,"journal":{"name":"Advocacy in Neurology","volume":"63 4 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2019-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"133610878","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2019-02-01DOI: 10.1093/med/9780198796039.003.0004
J. J. Heimans
Neurologic diseases may lead to brain dysfunction and consequently to impairment of consciousness, cognitive decline, and emotional disturbances. These conditions may give rise to a wide array of ethical issues. Cerebral dysfunction can be temporary but many conditions are chronic and/or progressive, and the impact of such long-lasting brain dysfunction on decision-making processes is substantial. In this chapter, disturbances of consciousness and the decision-making process, with focus on communication during the various stages of coma, persistent vegetative state, and permanent vegetative state, are discussed. Special attention is paid to the role of proxies, who often have to act as surrogate decision-makers. Further, some aspects of brain death and organ donation are reviewed and the role of the neurologist as a specialist with respect to brain functioning, but also as an advocate acting in the interest of the patient and the patients’ relatives is depicted. Subsequently, consequences of impaired decision-making capacity in dementia and other diseases leading to diminished cognitive functioning are discussed and a short reflection is dedicated to driving ability. Ultimately, ethical issues in connection with decisions on withdrawing and withholding life-sustaining treatment including end-of-life decisions are discussed, both in neurologic diseases with diminished cognitive functioning but also in neurologic disorders, like motor neuron disease, where cognitive functions are preserved.
{"title":"Ethical issues in neurology","authors":"J. J. Heimans","doi":"10.1093/med/9780198796039.003.0004","DOIUrl":"https://doi.org/10.1093/med/9780198796039.003.0004","url":null,"abstract":"Neurologic diseases may lead to brain dysfunction and consequently to impairment of consciousness, cognitive decline, and emotional disturbances. These conditions may give rise to a wide array of ethical issues. Cerebral dysfunction can be temporary but many conditions are chronic and/or progressive, and the impact of such long-lasting brain dysfunction on decision-making processes is substantial. In this chapter, disturbances of consciousness and the decision-making process, with focus on communication during the various stages of coma, persistent vegetative state, and permanent vegetative state, are discussed. Special attention is paid to the role of proxies, who often have to act as surrogate decision-makers. Further, some aspects of brain death and organ donation are reviewed and the role of the neurologist as a specialist with respect to brain functioning, but also as an advocate acting in the interest of the patient and the patients’ relatives is depicted. Subsequently, consequences of impaired decision-making capacity in dementia and other diseases leading to diminished cognitive functioning are discussed and a short reflection is dedicated to driving ability. Ultimately, ethical issues in connection with decisions on withdrawing and withholding life-sustaining treatment including end-of-life decisions are discussed, both in neurologic diseases with diminished cognitive functioning but also in neurologic disorders, like motor neuron disease, where cognitive functions are preserved.","PeriodicalId":383831,"journal":{"name":"Advocacy in Neurology","volume":"11 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2019-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"121910208","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2019-02-01DOI: 10.1093/MED/9780198796039.003.0010
H. Bulbeck
This chapter, ‘Patient and caregiver advocacy’, examines the context for advocacy for people who are living with a brain tumour, why it is different, how it manifests itself, and what advocacy looks like. It explores the challenges that come with living with a brain tumour and how advocacy can alleviate these challenges. The different advocacy roles are reviewed, including an exploration of how some patients can become advocates for others, while others do not. Underpinning this however is a need to be responsive and agile throughout what can be a very fluid, dynamic, and complex journey. Anyone who finds themselves supporting someone who is living with a brain tumour will find this chapter useful.
{"title":"Patient and caregiver advocacy","authors":"H. Bulbeck","doi":"10.1093/MED/9780198796039.003.0010","DOIUrl":"https://doi.org/10.1093/MED/9780198796039.003.0010","url":null,"abstract":"This chapter, ‘Patient and caregiver advocacy’, examines the context for advocacy for people who are living with a brain tumour, why it is different, how it manifests itself, and what advocacy looks like. It explores the challenges that come with living with a brain tumour and how advocacy can alleviate these challenges. The different advocacy roles are reviewed, including an exploration of how some patients can become advocates for others, while others do not. Underpinning this however is a need to be responsive and agile throughout what can be a very fluid, dynamic, and complex journey. Anyone who finds themselves supporting someone who is living with a brain tumour will find this chapter useful.","PeriodicalId":383831,"journal":{"name":"Advocacy in Neurology","volume":"16 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2019-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"128173805","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2019-02-01DOI: 10.1093/med/9780198796039.003.0020
C. Thalheim
While some national patient self-help and advocacy groups in the field of multiple sclerosis (MS) are looking back on 50 or more years of history, the European Multiple Sclerosis Platform—today the voice of more than 700,000 people with MS gathered in 40 member organizations in 36 European countries—was only created in 1989. During the past 16 years of its active work, advocacy on health and social care policies has gained momentum, with the very first report by the European Parliament on the effects of discriminatory treatment towards persons with MS in 2003. This chapter describes hands-on experiences and gives examples of the value of cooperation between national and European levels in advocacy work for the benefit of people with MS for the past two decades.
{"title":"Two decades of patient advocacy in multiple sclerosis: The success story of the European Multiple Sclerosis Platform","authors":"C. Thalheim","doi":"10.1093/med/9780198796039.003.0020","DOIUrl":"https://doi.org/10.1093/med/9780198796039.003.0020","url":null,"abstract":"While some national patient self-help and advocacy groups in the field of multiple sclerosis (MS) are looking back on 50 or more years of history, the European Multiple Sclerosis Platform—today the voice of more than 700,000 people with MS gathered in 40 member organizations in 36 European countries—was only created in 1989. During the past 16 years of its active work, advocacy on health and social care policies has gained momentum, with the very first report by the European Parliament on the effects of discriminatory treatment towards persons with MS in 2003. This chapter describes hands-on experiences and gives examples of the value of cooperation between national and European levels in advocacy work for the benefit of people with MS for the past two decades.","PeriodicalId":383831,"journal":{"name":"Advocacy in Neurology","volume":"94 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2019-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"126074610","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2019-02-01DOI: 10.1093/med/9780198796039.003.0007
W. Grisold
Knowledge and science are the basis of neurology, while competence, skills, and possession of a virtue synthetically referred to as ‘phronesis’ are also expected in clinical practice. There is an increasing awareness of the importance of ‘soft facts’, which are well-formulated in the CanMEDs and belong to the neurologist’s spectrum of abilities. This spectrum embraces several aspects of the ability to work and communicate within a team and a community. Physician advocacy for patients is implicit in many of the agendas of a practising neurologist, but is often related to individual- and patient-based (micro) aspects. Meso and macro aspects are often neglected. This disregard can be due to a lack of awareness but also to a lack of attention. Management and communication skills, compassion, sympathy, empathy, and ‘passion’ are often mentioned, and are implicitly part of successful advocacy.
{"title":"Knowledge and science are not enough","authors":"W. Grisold","doi":"10.1093/med/9780198796039.003.0007","DOIUrl":"https://doi.org/10.1093/med/9780198796039.003.0007","url":null,"abstract":"Knowledge and science are the basis of neurology, while competence, skills, and possession of a virtue synthetically referred to as ‘phronesis’ are also expected in clinical practice. There is an increasing awareness of the importance of ‘soft facts’, which are well-formulated in the CanMEDs and belong to the neurologist’s spectrum of abilities. This spectrum embraces several aspects of the ability to work and communicate within a team and a community. Physician advocacy for patients is implicit in many of the agendas of a practising neurologist, but is often related to individual- and patient-based (micro) aspects. Meso and macro aspects are often neglected. This disregard can be due to a lack of awareness but also to a lack of attention. Management and communication skills, compassion, sympathy, empathy, and ‘passion’ are often mentioned, and are implicitly part of successful advocacy.","PeriodicalId":383831,"journal":{"name":"Advocacy in Neurology","volume":"46 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2019-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"132043140","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2019-02-01DOI: 10.1093/MED/9780198796039.003.0024
R. Soffietti, C. Marosi, R. Rudà, W. Grisold
Brain tumours include different entities in terms of pathology, clinical characteristics, and therapeutic options; however, all represent an important cause of morbidity and mortality. The symptom burden of brain tumour patients is extremely high, and the different phases of the disease (at diagnosis, after surgery, during the adjuvant treatments, when progressive disease) pose specific problems to be managed. Rehabilitation, both at physical and cognitive levels, is increasingly required following the improvement of overall survival. The neurological complications of systemic cancer can negatively impact the quality of life of patients while cured from their primary tumour. Many aspects in neuro-oncology require advocacy. Among them, the cooperation between physicians, nurses, and caregivers, and an appropriate education of medical professionals on how to best manage brain tumour patients are the most critical. Moreover, we must work to guarantee the access for all patients to the best diagnostic and therapeutic tools by lobbying the Public National and European Institutions.
{"title":"Advocacy for brain tumours","authors":"R. Soffietti, C. Marosi, R. Rudà, W. Grisold","doi":"10.1093/MED/9780198796039.003.0024","DOIUrl":"https://doi.org/10.1093/MED/9780198796039.003.0024","url":null,"abstract":"Brain tumours include different entities in terms of pathology, clinical characteristics, and therapeutic options; however, all represent an important cause of morbidity and mortality. The symptom burden of brain tumour patients is extremely high, and the different phases of the disease (at diagnosis, after surgery, during the adjuvant treatments, when progressive disease) pose specific problems to be managed. Rehabilitation, both at physical and cognitive levels, is increasingly required following the improvement of overall survival. The neurological complications of systemic cancer can negatively impact the quality of life of patients while cured from their primary tumour. Many aspects in neuro-oncology require advocacy. Among them, the cooperation between physicians, nurses, and caregivers, and an appropriate education of medical professionals on how to best manage brain tumour patients are the most critical. Moreover, we must work to guarantee the access for all patients to the best diagnostic and therapeutic tools by lobbying the Public National and European Institutions.","PeriodicalId":383831,"journal":{"name":"Advocacy in Neurology","volume":"44 18","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2019-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"132974350","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2019-02-01DOI: 10.1093/MED/9780198796039.003.0009
H. Zwinkels
The advocacy role of neurology nurses—similar as to other involved healthcare professionals—is to support the patient and the caregiver through active involvement in analysing needs during the disease process and thereby improve a present condition of state. Advocacy is an activity to act in the best interest of the patient, in accordance with their wishes. In caretaking for patients’ well-being, the neurology nurse has to keep patients properly informed and carry out treatment and care plans with competence and diligence, while maintaining patients’ confidentiality. Neurology nurses in this way can contribute their expertise and influence as they work with communities or patient populations to improve health. With a case study of a neuro-oncology patient, it is made clear how neurology nurses will be able to determine and understand needs, speak on behalf of others when required, and support the mobilization of resources to effect change, and in this way, improve quality of care. Within multidisciplinary care the neurology nurse can have the role of a patient’s care navigator. When acknowledged as a case manager, the neurology nurse is able to deploy advocacy for the patients she takes care of.
{"title":"Advocacy and the perspective of (neurology) nursing","authors":"H. Zwinkels","doi":"10.1093/MED/9780198796039.003.0009","DOIUrl":"https://doi.org/10.1093/MED/9780198796039.003.0009","url":null,"abstract":"The advocacy role of neurology nurses—similar as to other involved healthcare professionals—is to support the patient and the caregiver through active involvement in analysing needs during the disease process and thereby improve a present condition of state. Advocacy is an activity to act in the best interest of the patient, in accordance with their wishes. In caretaking for patients’ well-being, the neurology nurse has to keep patients properly informed and carry out treatment and care plans with competence and diligence, while maintaining patients’ confidentiality. Neurology nurses in this way can contribute their expertise and influence as they work with communities or patient populations to improve health. With a case study of a neuro-oncology patient, it is made clear how neurology nurses will be able to determine and understand needs, speak on behalf of others when required, and support the mobilization of resources to effect change, and in this way, improve quality of care. Within multidisciplinary care the neurology nurse can have the role of a patient’s care navigator. When acknowledged as a case manager, the neurology nurse is able to deploy advocacy for the patients she takes care of.","PeriodicalId":383831,"journal":{"name":"Advocacy in Neurology","volume":"32 13","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2019-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"120854028","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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