Referring to the scientific paper mentioned in the previous blog post, the authors, who are affiliated with Indiana University Bloomington, make recommendations on the requirements for future technologies based on their findings. These recommendations can be briefly summarized in the following categories:
- Ad Hoc First Aid Care Collaboration with the Public
- Semi-Ad Hoc Care Collaboration During Transportation
- Prior Education for Secondary Caregivers at Workplace/School
Seizure First Aid Care Framework
In addition, a comprehensive framework for seizure first aid is recommended. This framework would help identify potential design opportunities, taking into account the unique challenges associated with different locations.
Seizure First Aid Care Framework. The color gradient around the edges indicates the general availability of each caregiver group in each place, with solid color indicating higher availability. © ACM Journals by the Association for Computing Machinery
Potentials
As shown in the framework, the authors state that there is great value in sharing information about first aid in all places other than the home (where the environment is most familiar and primary caregivers are most present).
Innovative solutions: A holistic approach
The authors emphasize the importance of a holistic perspective when designing technologies for seizure management. Future technologies should take into account the attribution of epilepsy stigma, such as the visibility of seizures and cultural perceptions, as well as the different symptoms of epilepsy, since people with chronic diseases often experience different individual and social challenges depending on the severity of their symptoms.
To address these challenges, the authors suggest several innovative approaches:
Ad Hoc First Aid Care Collaboration with the Public
The Public Area is the most challenging place to keep people with epilepsy (PWE) safe. These places illustrate the lowest controllability in case of an emergency, because of the high likelihood of lacking knowledge in seizure care among surrounding bystanders. Little research has been done on ad hoc information sharing in CSCW and HCI.
Participants in the research stated that existing apps for epilepsy emergencies were not useful in their experience. However, apps that alert trained CPR volunteers nearby could be a solution for seizure emergencies as well. There is potential to adapt this concept to this chronic disease.
Future systems should be designed with a simple user interface that does not require much effort to search for information and makes it more visible. It might be possible to display emergency-related information on lock screens when a smartphone detects a seizure. Bystanders could follow instructions if their attention is clearly drawn to the device through visual and auditory feedback, or even a conversational interface. Medical ID bracelets or necklaces already provide basic health information via QR or NFC, which are more visible than a smartphone in a pocket.
Semi-Ad Hoc Care Collaboration during Transportation
The authors present the idea of developing an automated information system in public transportation when a PWE enters a vehicle. The public announcement system could inform passengers and drivers of the presence of a PWE and provide basic emergency-related information. This would avoid the embarrassment of PWEs asking strangers to look for them and allow them to remain anonymous.
To avoid attracting too much attention or revealing the identity of the PWE when there are few passengers, information systems on trains, subways, or buses could also routinely inform passengers without technically recognizing a PWE boarding public transportation. Therefore, a public announcement system should consider different contexts (situations and social aspects).
Regarding private transportation, the authors emphasize the idea of a smart car that does not require active driving or AI-based seizure detection and automatically switches to self-driving mode. In case of an emergency, the car could send a notification to surrounding drivers, police or hospitals.
Prior Education for Secondary Caregivers at Workplace/School
For workplaces or educational institutions, providing information about seizure care in advance is crucial and easier than in the other places mentioned, because PWEs are there on a regular basis and potential secondary caregivers can learn over a period of time. Pre-education should be simple and easy to understand and could take place at both individual and organizational levels. At the organizational level, a school or company should adopt a culture of health and inclusion, as well as policies that encourage people to learn about epilepsy and first aid.
Smart buildings based on AI could also reduce the risk of seizures by automatically adjusting potential triggers, such as light or smell, and notifying people in the building in the event of an emergency.
Next Steps
To find out which area of the seizure first aid framework I want to focus on, it seems appropriate to conduct a divergent research on existing solutions, in addition to the examples already mentioned in the scientific paper. In this way, it will be possible to see how the pain points and challenges mentioned are currently being addressed.
Resources
Aehong Min, Wendy Miller, Luis M. Rocha, Katy Börner, Rion Brattig Correia, and Patrick C. Shih. 2021. Just In Time: Challenges and Opportunities of First Aid Care Information Sharing for Supporting Epileptic Seizure Response. Proc. ACM Hum.-Comput. Interact. 5, CSCW1, Article 113 (April 2021), 24 pages. https: //doi.org/10.1145/3449187
