Advocacy in Neurology

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.

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,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.

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, Francoise 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 Frederic 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 Ruda, 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