39 min
S01E07 “People don’t see them ill”: Stigma and invisibility of neurological disorders Brain Health Podcast
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- Health & Fitness
1 in 3 people will at some point in their life suffer from a brain disorder, according to the Global Burden of Disease report and this number might be growing. Understanding these conditions has, therefore, become more important than ever.
Donna Walsh, a patient advocate, tells us about daily challenges of people suffering from brain diseases and neurological conditions, including productivity issues and mental illness stigma. She also discusses the broader socioeconomic implications, and the technologies that can help.
Donna Walsh is the executive director of EFNA (European Federation of Neurological Associations), an organization with a mission to improve the life quality for patients in Europe by influencing policy makers and the general public, and facilitating access to necessary healthcare.
What makes EFNA special is that they focus on what is common to various disorders, like multiple sclerosis, Parkinson’s disease, stroke, brain tumor, epilepsy, Alzheimer’s disease, etc. The approach is apparent in their campaigns on Twitter, Facebook and Instagram, like:
#UnderTheUmbrella
#BrainLifeGoals
#BrainMindPain
Kim Baden-Kristensen is the co-founder and CEO of Brain+, a digital therapeutics company that helps people with brain disorders and injuries to recover their fundamental cognitive brain functions and daily life capabilities by using an app-based cognitive rehabilitation platform, which is developed in close collaboration with patients, clinicians and researchers.https://www.linkedin.com/in/kbadenk/
Alessia Covello is a life science IT consultant working in the field of healthcare technology implementation, and advocating for better services for people with brain conditions and learning disabilities.https://www.linkedin.com/in/alessiacovello/
The talking points:
5:06 The concept of patient advocacy and EFNA’s mission
8:30 Overcoming the stigma of neurological disorders
11:32 How common are brain disorders, what is the burden on society, and how important is it that brain disorders are addressed on a large scale?
15:00 Chronic and fluctuating conditions - what makes neurological disorders different and what impact they have in patients’ professional lives?
20:14 Developing a community of patients and a common agenda
27:56 Patient advocate training and how it relates to treatment accessibility
31:50 The role of digital technology in treatment of neurological disorders
35:40 Take-home messages to policy makers, medical and clinical community, research community, the industry, and patients and their families
Disclaimer:
All references to products, companies, and organizations in this podcast and the article that accompanies it are included with the purpose to inform, rather than promote or advertise. The podcast authors do not receive financial compensation for any of these references.
1 in 3 people will at some point in their life suffer from a brain disorder, according to the Global Burden of Disease report and this number might be growing. Understanding these conditions has, therefore, become more important than ever.
Donna Walsh, a patient advocate, tells us about daily challenges of people suffering from brain diseases and neurological conditions, including productivity issues and mental illness stigma. She also discusses the broader socioeconomic implications, and the technologies that can help.
Donna Walsh is the executive director of EFNA (European Federation of Neurological Associations), an organization with a mission to improve the life quality for patients in Europe by influencing policy makers and the general public, and facilitating access to necessary healthcare.
What makes EFNA special is that they focus on what is common to various disorders, like multiple sclerosis, Parkinson’s disease, stroke, brain tumor, epilepsy, Alzheimer’s disease, etc. The approach is apparent in their campaigns on Twitter, Facebook and Instagram, like:
#UnderTheUmbrella
#BrainLifeGoals
#BrainMindPain
Kim Baden-Kristensen is the co-founder and CEO of Brain+, a digital therapeutics company that helps people with brain disorders and injuries to recover their fundamental cognitive brain functions and daily life capabilities by using an app-based cognitive rehabilitation platform, which is developed in close collaboration with patients, clinicians and researchers.https://www.linkedin.com/in/kbadenk/
Alessia Covello is a life science IT consultant working in the field of healthcare technology implementation, and advocating for better services for people with brain conditions and learning disabilities.https://www.linkedin.com/in/alessiacovello/
The talking points:
5:06 The concept of patient advocacy and EFNA’s mission
8:30 Overcoming the stigma of neurological disorders
11:32 How common are brain disorders, what is the burden on society, and how important is it that brain disorders are addressed on a large scale?
15:00 Chronic and fluctuating conditions - what makes neurological disorders different and what impact they have in patients’ professional lives?
20:14 Developing a community of patients and a common agenda
27:56 Patient advocate training and how it relates to treatment accessibility
31:50 The role of digital technology in treatment of neurological disorders
35:40 Take-home messages to policy makers, medical and clinical community, research community, the industry, and patients and their families
Disclaimer:
All references to products, companies, and organizations in this podcast and the article that accompanies it are included with the purpose to inform, rather than promote or advertise. The podcast authors do not receive financial compensation for any of these references.
39 min