Advocacy in Neurology

Edited by Wolfgang Grisold, Walter Struhal, and Thomas Grisold

The book offers a practical perspective on advocacy activities in neurology, aiming to show when and why they are important for the field.
Contains experiences from neurological sub-specialities and illustrates the important, impactful role of advocacy for neurological patients and practitioners.
Practical advice and tools are provided including multifaceted case reports highlighting the move from theory into practice.

Advocacy in Neurology

Edited by Wolfgang Grisold, Walter Struhal, and Thomas Grisold

Description

Advocacy is a broad term that covers activities aimed at increasing attention, awareness, information, nursing, treatment, and support to improve the outcome of patients. These actions can be focused directly towards patients or indirectly via third parties. Although advocacy is present in all medical specialties, neurology in particular finds itself in need of strong advocacy tools as the diagnosis, treatment, long-term care and associated resource, and social issues have become increasingly complex. While some physicians implicitly or explicitly act as advocates, there is a lack of holistic research in order to clarify the meaning of advocacy along with concrete methods and strategies.

Advocacy in Neurology provides an integrated approach to the concept of advocacy in neurology. Structured in five sections, the book begins by explaining the term "advocacy" in general before elaborating on the areas of interest within neurology. The text goes on to offer concrete strategies and tools for clinicians to deploy advocacy in their daily work, and then discusses specific neurological diseases to point out and explain where advocacy is, or could be, beneficial. The book ends with an outlook, presentation of results, and an ending conclusion.

Advocacy in Neurology offers a practical perspective on advocacy activities in neurology, aiming to show when and why they are important for neurology.

Advocacy in Neurology

Edited by Wolfgang Grisold, Walter Struhal, and Thomas Grisold

Section 1: What is advocacy?
1:What is advocacy?, Wolfgang Grisold, Walter Struhal, and Thomas Grisold
2:Taking an epistemological perspective on advocacy, Thomas Grisold and Oliver Lukitsch
3:Advocacy in history and culture, Wolfgang Maderthaner and Wolfgang Grisold
4:Ethical issues in neurology, Jan J. Heimans
5:Physician, autonomy, and pharmaceutical industry, Tissa Wijeratne, Essie Low, and Christopher Neil
6:Advocacy, campaigning , lobbying: Good or bad?, Mohammad Wasay
Section 2: Why is advocacy needed?
7:Knowledge and science is not enough, Wolfgang Grisold
8:Perspectives on advocacy of medical doctors, Mohammad Wasay
9:Advocacy and the perspective of (neurology) nursing, Hanneke Zwinkels
10:Patient and caregiver advocacy, Helen Bulbeck
11:Patient involvement in European cancer societies: The example of ECCO - the European CanCer Organization, Françoise Van Hemelryck
12:Advocacy for neurology in migrants, Mustapha El Alaoui Faris
13:Advocacy for neurology: Local, regional, national, Apoorva Pauranik
14:Advocacy in the international arena, Raad Shakir
15:Working with others, the lesson of the European Brain Council, Jes Olesen and Frédéric Destrebecq
16:SOS children's villages: Re-discovering advocacy to increase relevance and impact. A high level case study, Richard Pichler
Section 3: What tools can be used for advocacy?
17:Project management techniques for advocates, Walter Struhal and Thomas Grisold
18:International advocacy: Case studies and lessons learnt, Wolfgang Grisold, Anna Klicpera, and Thomas Grisold
19:Using PR tools for advocacy, Birgit Kofler
Section 4: Advocacy in different neurological diseases
20:Advocacy for stroke, Tissa Wijeratne, Sheila Crewther, and David Crewther
21:Two decades of patient advocacy in Multiple Sclerosis: The success story of the European MS Platform, Christoph Thalheim
22:Advocacy in amyotrophic lateral sclerosis, Albert C. Ludolph
23:Neuromuscular disorders and advocacy, Elaine C. Jones and John D. England
24:Advocacy for movement disorders, Francesca Mancini and Carlo Colosimo
25:Advocacy for brain tumours, Riccardo Soffietti, Christine Marosi, Roberta Rudà, and Wolfgang Grisold
26:Advocacy in dementia, Gorazd B. Stokin
27:Advocating for orphan diseases in neurology, Fritz Zimprich
28:Palliative care, David Oliver
29:Advocacy for epilepsy: From the shadows to centre stage: Stand up for epilepsy, Jules C. Beal and Solomon L. Moshe
30:Advocacy for patients with headache, Timothy J. Steiner and Jes Olesen
31:Advocacy for patients with neuropathic pain, Ligia Onofrei and A. Gordon Smith
Section 5: Outlook, follow-up, results, ending, conclusion, and debriefing
32:Continuation or ending and 'debriefing', Wolfgang Grisold and Thomas Grisold
33:Results, outlook, and goals of this book, Wolfgang Grisold, Walter Struhal, and Thomas Grisold

Advocacy in Neurology

Edited by Wolfgang Grisold, Walter Struhal, and Thomas Grisold

Author Information

Edited by Wolfgang Grisold, Neurologist, Ludwig Boltzmann Institute for Experimental and Clinical Traumatology, Vienna, Austria, Walter Struhal, Neurologist and Chair of the Department of Neurology, University Clinic Tulln, Karl Landsteiner University of Health Sciences, Tulln, Austria, and Thomas Grisold, Research and Teaching Associate, Vienna University of Economics and Business, Vienna, Austria

Professor Wolfgang Grisold is a Neurologist at Ludwig Boltzmann Institute for Experimental and Clinical Traumatology, Vienna, Austria. His main research interests are in general neurology , neuro-oncology, palliative care, and neuromuscular disease. He has experience in hospital/institutional neurology and also general neurology and neuromuscular disease in private/office settings.

Associate Professor Walter Struhal is a Neurologist and Chair of the Department of Neurology at University Clinic Tulln, Karl Landsteiner University of Health Sciences, Tulln, Austria. His main research interests are in neurointensive care medicine, neurodegenerative diseases, and the autonomic nervous system, as well as medical postgraduate education.

Dr Thomas Grisold is a Research and Teaching Associate at Vienna University of Economics and Business, Vienna, Austria and he is studying a PhD in business and management. His main research interests are around the concept of organizational unlearning which refers to periods when organizations intentionally seek to get rid of established knowledge structures in order to create and implement new ones. Having a background in cognitive science, he aims to complement management research with interdisciplinary perspectives from neuroscience and philosophy.

Contributors:

Jules C. Beal, Saul R. Korey Department of Neurology, Albert Einstein College of Medicine and Montefiore Medical Center, Bronx, NY, USA

Helen Bulbeck, Brainstrust, Cowes, Isle of Wight

Carlo Colosimo, Department of Neurology, Santa Maria University Hospital, Terni, Italy

David Crewther, Centre for Human Psychopharmacology, Swinburne University of Technology, Melbourne, VIC, Australia

Sheila Crewther, Department of Psychology and Counselling, La Trobe University, Melbourne, VIC, Australia

Frédéric Destrebecq, European Brain Council, Brussels, Belgium

Mustapha El Alaoui Faris, Department of Neurology and Neuropsychology, CNRNST, Mohamed-V University, Rabat, Morocco

John D. England, Department of Neurology, Louisiana State University Health Sciences Center, School of Medicine, New Orleans, LA, USA

Thomas Grisold, Vienna University of Economics and Business, Vienna, Austria

Wolfgang Grisold, Ludwig Boltzmann Institute for Experimental and Clinical Traumatology, Vienna, Austria

Jan J. Heimans, Department of Neurology, VU University Medical Centre, Amsterdam, The Netherlands

Elaine C. Jones, President, Rhode Island Medical Society, Providence, RI, USA

Anna Klicpera, Paracelsus Private Medical University, Salzburg, Austria

Birgit Kofler, Bettschart and Kofler Communication, Vienna, Austria

Essie Low, Department of Psychology and Counselling, La Trobe University, Melbourne, VIC, Australia

Albert Ludolph, Department of Neurology, University of Ulm, Germany

Oliver Lukitsch, Department of Philosophy, University of Vienna, Vienna, Austria

Wolfgang Maderthaner, Austrian State Archives, Vienna, Austria

Francesca Mancini, Parkinson's Disease and Movement Disorders Center, Neurology Service, San Pio X Clinic, Milan, Italy

Christine Marosi, Department of Internal Medicine I, Clinical Division of Medical Oncology, Comprehensive Cancer Centre Vienna, Medical University, Vienna, Austria

Solomon L. Moshe, Saul R. Korey Department of Neurology, and Dominick P. Purpura Department of Neuroscience, Albert Einstein College of Medicine and Montefiore Medical Center, Bronx, NY, USA

Christopher Neil, Department of Neurology, Western Health, St Albans, VIC, Australia

Jes Olesen, Department of Neurology, University of Copenhagen, Copenhagen, Denmark

David Oliver, University of Kent, Tizard Centre, Canterbury, UK

Ligia Onofrei, University of Utah School of Medicine, Salt Lake City, UT, USA

Apoorva Pauranik, Department of Neurology, M.G.M. Medical College, Indore, India

Richard Pichler, Special Representative for External Affairs and Resources, SOS Children's Villages International, Vienna, Austria

Roberta Rudà, Department of Neuro-Oncology, University and City of Health and Science Hospital, Turin, Italy

Raad Shakir, Division of Brain Health, Imperial College London, Charing Cross Hospital, London, UK

A. Gordon Smith, Division of Neuromuscular Medicine, University of Utah School of Medicine, Department of Neurology, Salt Lake City, UT, USA

Riccardo Soffietti, Department of Neuro-Oncology, University and City of Health and Science Hospital, Turin, Italy

Timothy J. Steiner, Department of Neuroscience, Norwegian University of Science and Technology, Trondheim, Norway; Division of Brain Sciences, Imperial College London, UK

Gorazd B. Stokin, International Clinical Research Centre, St. Anne`s University Hospital, Brno, Czech Republic

Walter Struhal, University Clinic Tulln, Karl Landsteiner University of Health Sciences, Tulln, Austria

Christoph Thalheim, European Multiple Sclerosis Platform, Brussels, Belgium

Françoise Van Hemelryck, European CanCer Organisation, Brussels, Belgium

Mohammad Wasay, Department of Neurology, The Aga Khan University, Karachi, Pakistan

Tissa Wijeratne, Department of Neurology, Western Health, St Albans, VIC, Australia

Fritz Zimprich, Department of Neurology, Medical University of Vienna, Austria

Hanneke Zwinkels, Department of Neurology, Haaglanden Medical Center, The Hague, The Netherlands

Advocacy in Neurology

Edited by Wolfgang Grisold, Walter Struhal, and Thomas Grisold

Reviews and Awards

"This is a remarkable book, the first compendium I've seen that deals with advocacy in neurology. ... not only is this book good for the field, it is highly personal and reads at times as narrative with great stories. This the best book on this subject. I recommend it highly." - R. Allan Purdy, MD, FRCPC, Doodys