Pub Date : 2019-02-01DOI: 10.1093/med/9780198796039.003.0025
G. Stokin
Advocacy in dementia can be defined best as the act or process by an individual or a group influencing or otherwise supporting within social, health, economic, and political systems and organizations better dementia care at large. Dementia advocacy encompasses many activities including among others public speaking and media campaigns, sharing knowledge and experiences, providing resources including funding, establishing groups and organizations, developing and presenting guidelines, criteria, programmes, strategies, and policies and consulting regional, national, and international decision-makers to promote, support, and otherwise further dementia care. Recently, the World Health Organization recognized dementia as a global epidemic with the majority of people afflicted by dementia originating from low- to middle-income countries where access to dementia care is limited or absent. Indeed, there is an urgent need to develop cost-effective strategies to deliver sufficient and efficient dementia care as well as to optimize needed resources including finances. This need can only be fulfilled with diligent advocacy, which initially played a crucial role in defining the modern notion of dementia and more recently propelled dementia to the centre stage of healthcare priorities across the globe.
{"title":"Advocacy in dementia","authors":"G. Stokin","doi":"10.1093/med/9780198796039.003.0025","DOIUrl":"https://doi.org/10.1093/med/9780198796039.003.0025","url":null,"abstract":"Advocacy in dementia can be defined best as the act or process by an individual or a group influencing or otherwise supporting within social, health, economic, and political systems and organizations better dementia care at large. Dementia advocacy encompasses many activities including among others public speaking and media campaigns, sharing knowledge and experiences, providing resources including funding, establishing groups and organizations, developing and presenting guidelines, criteria, programmes, strategies, and policies and consulting regional, national, and international decision-makers to promote, support, and otherwise further dementia care. Recently, the World Health Organization recognized dementia as a global epidemic with the majority of people afflicted by dementia originating from low- to middle-income countries where access to dementia care is limited or absent. Indeed, there is an urgent need to develop cost-effective strategies to deliver sufficient and efficient dementia care as well as to optimize needed resources including finances. This need can only be fulfilled with diligent advocacy, which initially played a crucial role in defining the modern notion of dementia and more recently propelled dementia to the centre stage of healthcare priorities across the globe.","PeriodicalId":383831,"journal":{"name":"Advocacy in Neurology","volume":"22 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":"129796276","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/9780198796039.003.0011
F. V. Hemelryck
This chapter, ‘Patient involvement in European cancer societies’, describes how an oncology healthcare professional organization, the European CanCer Organisation (ECCO), engages with patient groups. It outlines the structure established by ECCO, the Patient Advisory Committee (PAC), and how it helps ECCO realize its vision. It gives examples of the inclusion of the patient perspective in scientific congress programmes, policy papers, and events. Patient advocacy has a long history in the field of oncology. Healthcare organizations give increased emphasis to the patient experience to provide care that is of most value to patients but also an essential component of sustainable healthcare.
{"title":"Patient involvement in European cancer societies: The example of ECCO—the European CanCer Organization","authors":"F. V. Hemelryck","doi":"10.1093/MED/9780198796039.003.0011","DOIUrl":"https://doi.org/10.1093/MED/9780198796039.003.0011","url":null,"abstract":"This chapter, ‘Patient involvement in European cancer societies’, describes how an oncology healthcare professional organization, the European CanCer Organisation (ECCO), engages with patient groups. It outlines the structure established by ECCO, the Patient Advisory Committee (PAC), and how it helps ECCO realize its vision. It gives examples of the inclusion of the patient perspective in scientific congress programmes, policy papers, and events. Patient advocacy has a long history in the field of oncology. Healthcare organizations give increased emphasis to the patient experience to provide care that is of most value to patients but also an essential component of sustainable healthcare.","PeriodicalId":383831,"journal":{"name":"Advocacy in Neurology","volume":"9 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":"129341657","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/9780198796039.003.0006
M. Wasay
Advocacy is a strong tool to bring about changes and improvements in society. Healthcare advocacy is increasing globally. Objectives of advocacy, formulation of message, and proper analysis of conflicts of opinion and interests are mandatory for designing an advocacy campaign. Both short- and long-term outcomes should be discussed and planned before starting a project. The methodology may be extremely important in defining the outcome of a project. Good or bad advocacy is dependent upon objectives and outcomes of a project. There could be multiple stakeholders relating to an advocacy campaign. Collaboration with stakeholders is a must for any successful campaign but roles should be well-thought out and discussed. This interaction and collaboration is called lobbying. It is an integral part and important component of advocacy. The dangers of advocacy include increased intensity of conflicts and counter-advocacy.
{"title":"Advocacy, campaigning, lobbying: Good or bad?","authors":"M. Wasay","doi":"10.1093/med/9780198796039.003.0006","DOIUrl":"https://doi.org/10.1093/med/9780198796039.003.0006","url":null,"abstract":"Advocacy is a strong tool to bring about changes and improvements in society. Healthcare advocacy is increasing globally. Objectives of advocacy, formulation of message, and proper analysis of conflicts of opinion and interests are mandatory for designing an advocacy campaign. Both short- and long-term outcomes should be discussed and planned before starting a project. The methodology may be extremely important in defining the outcome of a project. Good or bad advocacy is dependent upon objectives and outcomes of a project. There could be multiple stakeholders relating to an advocacy campaign. Collaboration with stakeholders is a must for any successful campaign but roles should be well-thought out and discussed. This interaction and collaboration is called lobbying. It is an integral part and important component of advocacy. The dangers of advocacy include increased intensity of conflicts and counter-advocacy.","PeriodicalId":383831,"journal":{"name":"Advocacy in Neurology","volume":"9 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":"115650747","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/9780198796039.003.0014
R. Shakir
For neurology, the crucial issue is the recognition of the magnitude and seriousness of nervous system disorders by the public, a subject that is well covered elsewhere in this book. Perhaps as important is the awareness of health authorities on the needs of the public to provision of neurological care. Without full governmental and healthcare authorities’ support, neurological disorders shall remain undersupported and underfunded. This chapter explores the issue of how to achieve this goal internationally. This should be accomplished in the face of other major competing interests not only in medicine, but also in the whole social care system.
{"title":"Advocacy in the international arena","authors":"R. Shakir","doi":"10.1093/med/9780198796039.003.0014","DOIUrl":"https://doi.org/10.1093/med/9780198796039.003.0014","url":null,"abstract":"For neurology, the crucial issue is the recognition of the magnitude and seriousness of nervous system disorders by the public, a subject that is well covered elsewhere in this book. Perhaps as important is the awareness of health authorities on the needs of the public to provision of neurological care. Without full governmental and healthcare authorities’ support, neurological disorders shall remain undersupported and underfunded. This chapter explores the issue of how to achieve this goal internationally. This should be accomplished in the face of other major competing interests not only in medicine, but also in the whole social care system.","PeriodicalId":383831,"journal":{"name":"Advocacy in Neurology","volume":"102 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":"123387379","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/9780198796039.003.0022
Elaine C. Jones, J. England
Neuromuscular disorders are a wide encompassing group of diseases that affect the nerves, muscles, and neuromuscular junctions but they can also affect cranial nerves, autonomic systems, and cause fatigue and even cognitive deficiencies. Patients with neuromuscular disorders can have a wide range of symptoms that create barriers to daily functioning. It is important that they not only to have access to good diagnostic and therapeutic care, but also management of the sequelae of the disease including disability access, educational support, nutritional support, and others. This is where advocacy becomes vital. Advocacy has a broad definition and includes access to care, but also requires working with governmental bodies to ensure laws and legislation prevent discrimination. This chapter will look at the advocacy needs of neuromuscular patients and will offer resources to help. Case study examples will demonstrate empirical observations of how advocacy efforts can be employed to help.
{"title":"Neuromuscular disorders and advocacy","authors":"Elaine C. Jones, J. England","doi":"10.1093/MED/9780198796039.003.0022","DOIUrl":"https://doi.org/10.1093/MED/9780198796039.003.0022","url":null,"abstract":"Neuromuscular disorders are a wide encompassing group of diseases that affect the nerves, muscles, and neuromuscular junctions but they can also affect cranial nerves, autonomic systems, and cause fatigue and even cognitive deficiencies. Patients with neuromuscular disorders can have a wide range of symptoms that create barriers to daily functioning. It is important that they not only to have access to good diagnostic and therapeutic care, but also management of the sequelae of the disease including disability access, educational support, nutritional support, and others. This is where advocacy becomes vital. Advocacy has a broad definition and includes access to care, but also requires working with governmental bodies to ensure laws and legislation prevent discrimination. This chapter will look at the advocacy needs of neuromuscular patients and will offer resources to help. Case study examples will demonstrate empirical observations of how advocacy efforts can be employed to help.","PeriodicalId":383831,"journal":{"name":"Advocacy in Neurology","volume":"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":"125226244","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/9780198796039.003.0019
B. Kofler
Advocacy in neurology, public education on the field of neurological diseases and care, and public relations as a means of supporting both advocacy and public education efforts, are closely interrelated. Advocacy activists are, in many instances, making use of public relations instruments—for the sake of public education campaigns as well as for awareness and mobilization purposes. PR tools play an important role in neurology advocacy. In some diseases, such as epilepsy, stroke, or dementia, awareness campaigns, public information, education, and advocating for an optimization of care can make a big difference with respect to prevention, early diagnosis, or access to therapies. Therefore, the question of how to best make use of the instruments in the PR toolbox for the purposes and aims of advocacy is of major practical relevance. In this chapter major PR instruments, particularly in the field of media relations and their practical use, will be described. Also, some critical issues with respect to the relationship between advocacy and the widespread efforts of the healthcare industry to integrate patients advocates and organizations of health professionals into their PR and lobbying strategies will also be mentioned.
{"title":"Using PR tools for advocacy","authors":"B. Kofler","doi":"10.1093/med/9780198796039.003.0019","DOIUrl":"https://doi.org/10.1093/med/9780198796039.003.0019","url":null,"abstract":"Advocacy in neurology, public education on the field of neurological diseases and care, and public relations as a means of supporting both advocacy and public education efforts, are closely interrelated. Advocacy activists are, in many instances, making use of public relations instruments—for the sake of public education campaigns as well as for awareness and mobilization purposes. PR tools play an important role in neurology advocacy. In some diseases, such as epilepsy, stroke, or dementia, awareness campaigns, public information, education, and advocating for an optimization of care can make a big difference with respect to prevention, early diagnosis, or access to therapies. Therefore, the question of how to best make use of the instruments in the PR toolbox for the purposes and aims of advocacy is of major practical relevance. In this chapter major PR instruments, particularly in the field of media relations and their practical use, will be described. Also, some critical issues with respect to the relationship between advocacy and the widespread efforts of the healthcare industry to integrate patients advocates and organizations of health professionals into their PR and lobbying strategies will also be mentioned.","PeriodicalId":383831,"journal":{"name":"Advocacy in Neurology","volume":"2 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":"115609800","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/9780198796039.003.0029
T. Steiner, J. Olesen
Despite irrefutable evidence of the high prevalence, burden, and cost of headache disorders, advocacy for headache—for more headache research and better headache care—has been largely in vain so far. Headache receives little respect and few resources. There are scientific, public health, and financial arguments for change, which are evidence-based and sound. They make compelling messages, which nonetheless have not yet reached the consciousness of health policymakers. Headache disorders are the least funded of all neurological disorders, while accounting for more disability than all other neurological disorders combined. This is a remediable failure. The worldwide programme of activities of the Global Campaign against Headache, and its collaboration with the Global Burden of Disease studies, are generating an unstoppable flow of evidence to support change. The World Health Organization has acknowledged the global public health importance of headache, and committed to advocacy on its behalf at macro level. A momentum is building. The arguments for change are, for now, unanswerable, but they have to be put to those who can make change happen, and repeated again and again. If they work with these organizations, the many national and supranational professional and lay groups will find previously closed doors are, at last, slowly opening.
{"title":"Advocacy for patients with headache","authors":"T. Steiner, J. Olesen","doi":"10.1093/med/9780198796039.003.0029","DOIUrl":"https://doi.org/10.1093/med/9780198796039.003.0029","url":null,"abstract":"Despite irrefutable evidence of the high prevalence, burden, and cost of headache disorders, advocacy for headache—for more headache research and better headache care—has been largely in vain so far. Headache receives little respect and few resources. There are scientific, public health, and financial arguments for change, which are evidence-based and sound. They make compelling messages, which nonetheless have not yet reached the consciousness of health policymakers. Headache disorders are the least funded of all neurological disorders, while accounting for more disability than all other neurological disorders combined. This is a remediable failure. The worldwide programme of activities of the Global Campaign against Headache, and its collaboration with the Global Burden of Disease studies, are generating an unstoppable flow of evidence to support change. The World Health Organization has acknowledged the global public health importance of headache, and committed to advocacy on its behalf at macro level. A momentum is building. The arguments for change are, for now, unanswerable, but they have to be put to those who can make change happen, and repeated again and again. If they work with these organizations, the many national and supranational professional and lay groups will find previously closed doors are, at last, slowly opening.","PeriodicalId":383831,"journal":{"name":"Advocacy in Neurology","volume":"3 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":"131170499","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/9780198796039.003.0021
A. Ludolph
Amyotrophic lateral sclerosis (ALS) is among the most severe neurological conditions which leaves the patient in a speechless (deefferentiated) state. Advocacy is yielded to give patients a voice and to recognize patient’s actual preferences and needs. The chapter reviews the most important levels where advocacy is required: the affected families, professionals, the public, and health and science politics. When advocacy is performed in a considerate and thoughtful manner, patient’s coping mechanisms can be activated and quality of life can be secured to facilitate life in dignity; caregiver’s burden can be substantially reduced. For the public and scientific world, advocacy may lead to more efficient therapeutic approaches and allows for patient-centred care.
{"title":"Advocacy in amyotrophic lateral sclerosis","authors":"A. Ludolph","doi":"10.1093/MED/9780198796039.003.0021","DOIUrl":"https://doi.org/10.1093/MED/9780198796039.003.0021","url":null,"abstract":"Amyotrophic lateral sclerosis (ALS) is among the most severe neurological conditions which leaves the patient in a speechless (deefferentiated) state. Advocacy is yielded to give patients a voice and to recognize patient’s actual preferences and needs. The chapter reviews the most important levels where advocacy is required: the affected families, professionals, the public, and health and science politics. When advocacy is performed in a considerate and thoughtful manner, patient’s coping mechanisms can be activated and quality of life can be secured to facilitate life in dignity; caregiver’s burden can be substantially reduced. For the public and scientific world, advocacy may lead to more efficient therapeutic approaches and allows for patient-centred care.","PeriodicalId":383831,"journal":{"name":"Advocacy in Neurology","volume":"2 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":"126723018","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/9780198796039.003.0003
Wolfgang Maderthaner, W. Grisold
We might well conceive of fin-de-siècle and interwar Vienna as providing the background for a paradigmatic project of Late Enlightenment: a ‘powerhouse of modernity’, as Charles Schorske once called it. The emergence of a widely renowned medical school was, in a variety of ways, characteristic for that project. Brilliant in diagnosis, nihilistic in therapy, the school searched for methods that we would nowadays categorize by the term advocacy. This chapter analyses two different yet closely interrelated concepts that are both, in their respective ways, aimed at the emancipation of the individual: Sigmund Freud’s psychoanalysis and Julius Tandler’s social reconfiguration of a whole urban body.
{"title":"Advocacy in history and culture","authors":"Wolfgang Maderthaner, W. Grisold","doi":"10.1093/MED/9780198796039.003.0003","DOIUrl":"https://doi.org/10.1093/MED/9780198796039.003.0003","url":null,"abstract":"We might well conceive of fin-de-siècle and interwar Vienna as providing the background for a paradigmatic project of Late Enlightenment: a ‘powerhouse of modernity’, as Charles Schorske once called it. The emergence of a widely renowned medical school was, in a variety of ways, characteristic for that project. Brilliant in diagnosis, nihilistic in therapy, the school searched for methods that we would nowadays categorize by the term advocacy. This chapter analyses two different yet closely interrelated concepts that are both, in their respective ways, aimed at the emancipation of the individual: Sigmund Freud’s psychoanalysis and Julius Tandler’s social reconfiguration of a whole urban body.","PeriodicalId":383831,"journal":{"name":"Advocacy in Neurology","volume":"10 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":"131607108","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/9780198796039.003.0030
Ligia V Onofrei, A. Smith
Pain is a nearly universal yet highly individual experience, with broad determinants including genetic factors, mechanism of injury, medical comorbidities, social aspects, and variations in coping styles and belief systems. In this chapter we examine how pain impacts individuals, healthcare providers who care for individuals with pain, and the overall health system with an emphasis on the importance of advocacy at each level. Key issues include the importance of continuing research in developing effective treatments with minimal side effects, improving access to and understanding of complementary and alternative treatment modalities such as cognitive behavioural therapy, developing continuing medical education programmes that empower physicians in the management of complex pain disorders, developing educational materials for patients that enable them to participate in the prevention and/or treatment of pain disorders, and integrating efforts within and across institutions and at a health system level.
{"title":"Advocacy for patients with neuropathic pain","authors":"Ligia V Onofrei, A. Smith","doi":"10.1093/MED/9780198796039.003.0030","DOIUrl":"https://doi.org/10.1093/MED/9780198796039.003.0030","url":null,"abstract":"Pain is a nearly universal yet highly individual experience, with broad determinants including genetic factors, mechanism of injury, medical comorbidities, social aspects, and variations in coping styles and belief systems. In this chapter we examine how pain impacts individuals, healthcare providers who care for individuals with pain, and the overall health system with an emphasis on the importance of advocacy at each level. Key issues include the importance of continuing research in developing effective treatments with minimal side effects, improving access to and understanding of complementary and alternative treatment modalities such as cognitive behavioural therapy, developing continuing medical education programmes that empower physicians in the management of complex pain disorders, developing educational materials for patients that enable them to participate in the prevention and/or treatment of pain disorders, and integrating efforts within and across institutions and at a health system level.","PeriodicalId":383831,"journal":{"name":"Advocacy in Neurology","volume":"63 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":"133574752","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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