Public Engagement and Neurology: An Update

Abstract

Background: Public engagement (PE) is defined as the involvement of “specialists who listen, develop their understanding, and interact with non-specialists in non-profit activities of educational, cultural, and social nature to engage the public in science-related matters”. The public health relevance of PE consists in building up a scientifically literate society, able to participate in and support scientific and technological developments and their implications for educational settings. Neurological disorders account for 35% of all diseases. PE could have a positive impact on the lives of people affected by neurological diseases. Method: This review evaluates the role of PE in dementia, stroke, epilepsy, multiple sclerosis, Parkinson’s disease, migraine, neurogenetics, and amyotrophic lateral sclerosis. Results and Conclusions: PE can provide accessible information, support research activities and prevention through appropriate lifestyles, and increase knowledge and awareness of neurological disorders, improving their diagnosis and treatment.

Educating the masses to address a global public health priority: The Preventing Dementia Massive Open Online Course (MOOC)

“…Mainstream and social media are common sources of health information, but headlines are often misleading and health and medical research findings over-simplified or exaggerated. A ‘panic-blame’ framework has been identified in media reporting of dementia and risk, which catastrophises dementia and treats it as preventable, leading to people with dementia feeling or being blamed for not doing enough to avoid the condition [ 47 , 48 ]. Public engagement (experts engaging with the community) is needed to ensure accurate messages are conveyed that educate the masses in a way that reduces dementia stigma and enables risk reduction.…”

“…Public engagement (experts engaging with the community) is needed to ensure accurate messages are conveyed that educate the masses in a way that reduces dementia stigma and enables risk reduction. There is a paucity of data on the impacts of public engagement in dementia and its prevention [ 47 ]. The few studies evaluating efforts to raise awareness of dementia risk reduction such as engaging with local communities [ 49 ], local public awareness campaigns [ 28 , 31 ], educational websites [ 23 , 25 , 50 ], and the PDMOOC, report some difficulties reaching and recruiting people.…”

Public engagement in government officials’ posts on social media during coronavirus lockdown

“…In addition, medical and academic professionals are not financially supported by the government [ 48 – 52 ]. In summary, public engagement in the media context includes the communication and understanding between specialists and professionals and the ordinary public, which contributes to building up a scientifically literate society [ 53 ], particularly in the developing world [ 54 ] through increasing their health awareness. In addition, it helps the health sectors and officials in decision-making regarding outbreak management [ 55 ].…”

Amyotrophic lateral sclerosis in social media: Content analysis of YouTube videos

“…Moreover, public engagement makes a positive impact on people with neurological disease, as it advocates for policy changes as well as prioritizing this condition in the research agenda. 24 The Ice Bucket Challenge taught us the appropriate use of social media and the importance of public engagement as it increased incredibly both public awareness and the amount of research funding. 25 Also, these contents in documentaries can be a source of emotional support for patients.…”