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/9780198796039.003.0009
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}
Pub Date : 2019-02-01DOI: 10.1093/med/9780198796039.003.0017
W. Struhal, Thomas Grisold
This chapter focuses on the operational side of advocacy. The question we are pursuing is, ‘What is needed to get an advocacy project done?’. Physicians and nurses are used to working in environments that are marked by stable (infra)structures, well-known goals, and specific requirements and incentives. Most often, advocates will find the opposite when they work on projects. Since there are no or only weak functioning projects in place, advocates may face several challenges throughout a project. There could be no structure, no specified goals, and no incentives. Pursuing the goal to provide operational support to anyone who is doing advocacy, we summarize major challenges and provide concrete tools and strategies to master these challenges and get projects done successfully.
{"title":"Project management techniques for advocates","authors":"W. Struhal, Thomas Grisold","doi":"10.1093/med/9780198796039.003.0017","DOIUrl":"https://doi.org/10.1093/med/9780198796039.003.0017","url":null,"abstract":"This chapter focuses on the operational side of advocacy. The question we are pursuing is, ‘What is needed to get an advocacy project done?’. Physicians and nurses are used to working in environments that are marked by stable (infra)structures, well-known goals, and specific requirements and incentives. Most often, advocates will find the opposite when they work on projects. Since there are no or only weak functioning projects in place, advocates may face several challenges throughout a project. There could be no structure, no specified goals, and no incentives. Pursuing the goal to provide operational support to anyone who is doing advocacy, we summarize major challenges and provide concrete tools and strategies to master these challenges and get projects done successfully.","PeriodicalId":383831,"journal":{"name":"Advocacy in Neurology","volume":"124 ","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2019-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"120870777","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/9780198796039.003.0018
W. Grisold, A. Klicpera, Thomas Grisold
This chapter takes an international perspective on advocacy. It focuses on the question of how international advocacy projects can look like and what makes them successful. In doing so, we turn to the practical and applied sides of advocacy. Advocacy activities aim at taking the voice of patients to inform, protect, and support them. In the first part of this chapter, we will present successful cases of advocacy activities in neurology. In the second part, we will reflect on personal experiences where advocacy activities were or should have been implemented. Reflecting on these cases, we present some lessons learnt that advocates may want to consider when they plan and implement international advocacy activities.
{"title":"International advocacy: Case studies and lessons learnt","authors":"W. Grisold, A. Klicpera, Thomas Grisold","doi":"10.1093/med/9780198796039.003.0018","DOIUrl":"https://doi.org/10.1093/med/9780198796039.003.0018","url":null,"abstract":"This chapter takes an international perspective on advocacy. It focuses on the question of how international advocacy projects can look like and what makes them successful. In doing so, we turn to the practical and applied sides of advocacy. Advocacy activities aim at taking the voice of patients to inform, protect, and support them. In the first part of this chapter, we will present successful cases of advocacy activities in neurology. In the second part, we will reflect on personal experiences where advocacy activities were or should have been implemented. Reflecting on these cases, we present some lessons learnt that advocates may want to consider when they plan and implement international advocacy activities.","PeriodicalId":383831,"journal":{"name":"Advocacy in Neurology","volume":"93 15 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":"128956228","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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