by tom.giess -

IMPULSE #6: Potentials and Ethical Challenges of Brain-sensing Technologies

During my research I came across multiple TED Talks, that sounded really interesting to my topic of first aid for epilepsy. I decided to run a TED Talk watching session to learn about the most recent extraordinary findings and discussions about brain-sensing technologies. I did this, because the concept of my existing prototype relies on seizure detection to start an app alert to nearby bystanders to provide first aid. I had a look on the following with TED Talks:

Forecasting and preventing epileptic seizures

David Garrett’s 2022 TED Talk, Listening to the Brain: A Functional Cure for Epilepsy, dives into how neuromodulation implants can provide a „functional cure“ for epilepsy. His research shows that it is possible to predict seizures by tracking electrical activity in the brain. Garrett explains how brain excitability levels that exceed a certain threshold lead to an electrical storm, triggering seizures. His team developed ultra-thin carbon fiber electrodes to be placed into brains of living humans. This sensor technology is integrated into an epilepsy management system. These electrodes wirelessly transmit data, allowing AI-powered algorithms to detect seizure patterns and intervene before a seizure occurs.

Garrett’s work makes an example of the immense potential of brain-sensing technology. Once it is accessible for consumers, such advancements could drastically improve the quality of life for epilepsy patients. The ability to predict and prevent seizures could make constant supervision or emergency first aid not needed anymore. However, continuous brain monitoring raises concerns about user acceptance – how comfortable would individuals be, if they know their brain activity is being monitored and potentially controlled? While the technology offers freedom from seizures, it may also introduce anxieties about privacy and autonomy.

AI wearables for seizure detection

Rosalind Picard’s 2018 talk, An AI Smartwatch That Detects Seizures, builds upon this concept by demonstrating how AI-powered wearables can recognize seizures and alert caregivers. Her work was inspired by cases of Sudden Unexpected Death in Epilepsy (SUDEP), which claims lives more frequently than sudden infant death syndrome. The smartwatch, developed by her company Empatica, runs real-time AI to detect generalized tonic-clonic seizures and has received FDA approval. This could be a game-changer for people with epilepsy, enabling immediate emergency response and reducing deaths. However, as with Garrett’s implantable devices, widespread adoption will depend on user trust and data privacy assurances. Real-time health data collection is extremely valuable for medical purposes, but it also opens the door for potential misuse.

Breaking the stigma around epilepsy

Besides technological advancements, societal perceptions of epilepsy significantly impact those affected. Sitawa Wafula’s 2017 TED Talk, Why I Speak Up About Living with Epilepsy, highlights the emotional and psychological struggles individuals face. She describes losing her job and dropping out of school due to her seizures, leading to isolation and frustration. Through online blogging and advocacy, she found a way to empower others and change the narrative around epilepsy. Wafula’s talk shows the importance of combining technological advancements with public awareness and support systems. Brain-sensing technologies can provide medical solutions, but addressing stigma and ensuring societal acceptance are equally crucial for improving patients’ lives.

Ethical dilemmas in brain data privacy

Nita Farahany’s 2023 TED Talk, Your Right to Mental Privacy in the Age of Brain-Sensing Tech, shifts the conversation towards the ethical aspects of neurotechnology. As major tech companies integrate brain sensors into everyday devices – such as headbands, earbuds and watches – brain activity is becoming increasingly transparent. Farahany warns that while brain-sensing technology has immense potential for treating conditions like epilepsy and PTSD, it also presents unprecedented privacy risks.

Brain data is more sensitive than any other form of personal data. It can reveal emotions, preferences and thoughts, raising concerns about microtargeting and behavioral manipulation. Farahany calls for the recognition of cognitive liberty as a fundamental human right, which means that individuals must have control over their own brain data. Without well-thought ethical frameworks, neurotechnology could become a tool for surveillance and control rather than empowerment.

Expanding Our Understanding of the Brain

Finally, Ed Boyden’s 2016 TED Talk, A New Way to Study the Brain’s Invisible Secrets, presents an approach to understanding the brain’s microscopically small structures. Boyden’s team developed a technique using expandable materials – similar to those found in baby diapers – to enlarge brain tissue for easier examination. By physically expanding the brain, researchers can distinguish between biomolecules and recognize structures that may be responsible for neurological diseases.

Boyden’s work emphasizes the importance of fundamental research in brain science. While neurotechnologies are advancing rapidly, they still rely on a limited understanding of brain function. By developing new ways to study the brain, scientists can create more effective examinations and medical professionals targeted treatments based on solid understanding rather than guesswork.

Conclusion

The concept for a first aid app for epilepsy I initially brought into a prototype, that is suppose to be powered by brain-sensing technology, could be of great importances in ensuring timely first aid by strangers and medical assistance. However, by integrating predictive algorithms and real-time AI monitoring, such an app would need to be shifted towards the scenario before a seizure occurs. Also if a unit is included, that prevents the brain to have electrical anomalies which would lead to non-occurring seizures, the usefulness of this app to provide first aid instruction to public bystanders significantly decreases.

However, the success of such a technology depends on trust and ethical considerations. Continuous brain monitoring comes with concerns about privacy, data security and user acceptance. If individuals are afraid how their brain data might be used or shared, they may not to use the technology. Regulatory measures and transparent policies must be in place to ensure that brain data remains protected and is only used for the benefit of the user.

Ultimately, while a first aid app for epilepsy has the potential to better first aid care, it must be developed with both innovation and ethical responsibility in mind. By addressing privacy concerns and prioritizing user autonomy, we can create a future where technology truly empowers those living with epilepsy.

Resources

https://www.ted.com/talks/david_garrett_listening_to_the_brain_a_functional_cure_for_epilepsy?subtitle=en&lng=de&geo=de

https://www.ted.com/talks/rosalind_picard_an_ai_smartwatch_that_detects_seizures?subtitle=en&lng=de&geo=de

https://www.ted.com/talks/sitawa_wafula_why_i_speak_up_about_living_with_epilepsy?lng=de&geo=de&subtitle=en

https://www.ted.com/talks/nita_farahany_your_right_to_mental_privacy_in_the_age_of_brain_sensing_tech?subtitle=en

https://www.ted.com/talks/ed_boyden_a_new_way_to_study_the_brain_s_invisible_secrets?subtitle=en

by tom.giess -

IMPULSE #5: Last Gfü Meetup of the Year

© Institut für Epilepsie

Since I got in contact with the Institut für Epilepsie in Graz to conduct an feedback interview of my prototype earlier this year, I’ve been following their social media and website for any news regarding their institution. This was when I discovered the Gfü group („gemeinsam füreinander“), an initiative and a safe space for young people with and without epilepsy. This group meets once a month to do spare time activities and create community. It is driven by the ideas and impulses of its participants and is free of charge.

On 10th of December I got the opportunity to join one of the last meetings of the year. The Gfü group met at Hauptplatz in Graz to visit and take a walk along Graz‘ Christmas markets. We were a small group which consisted of five people. I met Tanja again, she is a certified epilepsy consultant and part of the team at Institut für Epilepsie. Along with her colleague Regina I got to know her when I had the mentioned feedback interview. Tanja was accompanied by her boyfriend. Two young persons in their twenties joined for the meetup. I was warmly welcomed and got to tell, how Tanja and I got in contact and what I do in the research for my master’s studies. It appeared to be a bit complicated to explain what I do in my research, but I knew to break it down to the core. Tanja’s boyfriend showed interest in my field of study and my topic which led us to have a nice exchange. He, who studied at FH JOANNEUM himself, works in software testing and knew about the importance of usability for digital products. He reflected my topic and its complexity would definitely be worthy of a master’s thesis.

After we went along Herrengasse and crossed Landhaushof, we got to the crossing at Schmiedgasse and Landhausgasse to have hot beverages at one of the Christmas stalls. That’s when I got to know both of the young people – for privacy reasons names and genders are not mentioned in this blog post. They asked me about my field of study and seemed interested as well. In course of the conversation we got to what they do in their lives. Without my asking and without any hesitation, they started talking about their individual forms of epilepsy. Previous to this meetup, it was important to me not to ask people about their disease actively and just have a conversation if people open up to this topic themselves. And this is what happened in the conversation between Tanja, the two young people and me.

The first person was diagnosed with focal seizures which are accompanied with side effects. This limits the person to the amount of visual and auditory stimuli that can be managed to perceive. The person told us that it was initially a plan to study music, but had to abandon the studies when the diagnosis with epilepsy came up. In general focal seizures emerge from just one part of the brain. Symptoms can greatly vary such as intense feelings, loss of sensory like smelling or tasting, change in consciousness, unusual and repetitive behavior. Before a focal seizure affected persons experience an aura, an upcoming feeling that a seizure is about to occur. When a focal seizure is over some people experience headache or muscle pain.

The other person has experienced generalized seizures. It must have been a drunken feeling with a narrowed field of vision and muffled hearing. The person was on their own and and watering plants in the garden when the first seizure occurred. While having a seizure the person picked up the phone, but was not able to speak properly. After this incident the person did not remember anything that has happened. Because of the diagnosis, the person decided not to go abroad for a year. Generally speaking, generalized seizures are originating from both sides of the brain. It can be characterized with loss of consciousness, falls, massive muscle contractions and weakness, staring into empty space and repeated jerking movements.

As I quickly noticed, both persons in their twenties were limited in their life choices due to the fact that they were diagnosed with epilepsy. This contact with people with epilepsy was important to me. This contact with people with epilepsy was important to me. Not only did I get in touch with people with epilepsy, but I also learned something for my own life. The disease with a thousand faces, but rarely visible, is not something you would expect a person standing in front of you to have. Reflecting on this, but not wanting to feel sorry for anyone, makes me realize how fortunate I am for my physical health. Epilepsy can affect one in ten people during their lifetime, but the majority remain unaffected. The fact that there are a lot of other possible diseases a person can have, which comes with a certain probability of being affected, makes us unaffected extremely lucky. It is something we should not take for granted.

Resources

https://www.facebook.com/photo?fbid=995075082664321&set=a.479284970910004
https://www.institut-fuer-epilepsie.at/gfue-gruppe/

https://www.ninds.nih.gov/health-information/disorders/epilepsy-and-seizures

by tom.giess -

IMPULSE #4: Understanding Epilepsy – Key Insights from an Online Training

Being in contact with Tanja from Institut für Epilepsie in Graz, I received a lot of resources about epilepsy. One resource immediately caught my attention: selpers.com is a Vienna based online platform, which offers scientific and free online courses. Its mission is to help people with chronic diseases to understand their condition, ease treatment and increase their quality of life. At its core selpers believes, that patients can influence their course of the disease through their behavior.

Besides trainings and livestream events users can use texts, video interviews, animations, podcasts and checklists to receive what they need to know in an interactive and easy-to-understand way. A blog features interviews with experts, new research and stories.

I chose the training course „Epilepsie verstehen“ held by Assoc. Prof. Dr. Gerhard Luef. I expected the course to be a good refresher and overview of the topic of epilepsy, because I felt I still have some blindspots that would need to be filled. In the following I will go through the contents and what I’ve learned.

1. What is epilepsy?

Dr. Luef starts with giving a definition about the chronic disease. Epilepsy is one of the most common chronic diseases worldwide. Around 10% of people will experience a seizure at some point in their lives and approximately 5% of them will develop epilepsy. Seizures can happen to basically anyone, even individuals without prior diseases, such as students experiencing lack of sleep. While a single seizure does not necessarily mean someone has epilepsy, multiple unprovoked seizures typically characterize the disorder. Although epilepsy is not curable, it is manageable through medication for two-thirds of affected individuals. Surgical intervention can offer a permanent solution in some cases.

A seizure occurs when brain cells discharge electrical signals in an uncontrolled manner, much like a „short circuit“ or „electrical storm“ in a specific brain region. In some cases, the entire brain is affected, leading to disruptions in all senses, including loss of smell, taste or even hallucinations. The most common type of seizure is focal, which arise from specific brain regions. Generalized seizures, on the other hand, involve widespread electrical discharges across the brain. Although epilepsy does not usually cause permanent damage, untreated seizures can lead to memory impairment over time.

2. Causes of epilepsy

Dr. Luef explains epilepsy itself is not inheritable, but a genetic predisposition can increase the likelihood of experiencing a seizure. Some genetic and pre-exisiting disorders, such as Landau-Kleffner syndrome or Down syndrome, may promote epilepsy. Additionally, brain injuries caused by stroke, tumors, head trauma or severe concussions can lead to epilepsy because of a developed long-term instability in brain function. In general, anything harmful to the brain, including sleep deprivation and excessive alcohol consumption, increases the risk of seizures.

3. Symptoms and course of disease

Focal seizures may begin with an aura – a warning sign like nausea or sensory disturbances – before leading to loss of consciousness. Symptoms may include unusual smells, tastes, or involuntary movements like hand twitching. Dr. Luef claims that observers often find seizures distressing, especially when symptoms such as foaming at the mouth or bleeding occur. However, people with epilepsy typically do not feel pain during a seizure, though they may experience muscle soreness or injuries afterwards.

Absence seizures, very common for children and teenagers, are characterized as brief episodes of unresponsiveness, often mistaken for daydreaming. After a severe seizure, individuals may fall into deep sleep and/or experience disorientation for minutes to an hour possibly. Those who suffer generalized seizures usually have no memories of the event. Dr. Luef states that minimal intervention for bystanders during a seizure is best: To ensure a safe environment is the priority. If warning signs like sensory changes occur before a seizure, documenting them if possible can help with diagnosis of doctors and management of the disease.

4. Diagnosis of epilepsy

According to Dr. Luef’s opinion first seizures should always be examined by a medical professional as soon as possible, ideally within 20 hours. Common symptoms include tingling sensations, regularly occurring déjà vu episodes or sudden nausea. Neurologists and pediatricians use various diagnostic tools to differentiate epilepsy from similar conditions like syncope (fainting) or psychogenic seizures.

A proper evaluation in a clinical setting includes medical history, eyewitness reports, and physical examinations, followed by an electroencephalogram (EEG) and an MRI. EEGs measure electrical activity in the brain to detect abnormal patterns. After a first seizure, patients may need to stay in the hospital for further monitoring.

5. Living with epilepsy

For most people with epilepsy, lifelong medication and therapy is necessary. In emergency situations, placing a person in the recovery position and minimizing injury risk is essential. For individuals planning a family, proper medical advice is crucial since some epilepsy medications can cause birth defects. Seizures during pregnancy pose risks for both the mother and baby, but this according to Dr. Luef should not prevent expectant parents to not have children.

Avoiding seizure triggers, such as sleep deprivation and alcohol misuse in relation to the specific form of epilepsy, is important. It can be dangerous to forget medication, especially during activities like hiking, swimming or driving. Certain careers, such as pilot, train conductor or military service, consciously exclude people with epilepsy due to safety concerns.

Epilepsy can be life-threatening in rare cases, such as Sudden Unexpected Death in Epilepsy (SUDEP), which occurs in about 1 in 1,000 patients. But most people with epilepsy can lead full and unrestricted lives. Open discussions about epilepsy, participation in support groups and spreading awareness are key to improving quality of life for those affected.

6. My message to you

In the last part Dr. Luef addresses affected people and their dependants directly. Epilepsy is not something affected people need to be ashamed of. It is a normal disease like any other. The affected should talk openly about their disease and get into an exchange. They should stick to their medication plan and ask a medical professional for help, when intolerances occur. Last but not least major risks should be avoided. Following all this makes living with epilepsy very easy for the affected.

Reflections

Overall, this online training provided a very good and comprehensive overview. I felt quite well informed and wished I had taken this training earlier. It really helped to fill in the gaps in my knowledge. It was interesting to hear an expert’s perspective on the disease, especially the part about people being shocked when they witness an epileptic seizure. This is valuable to know for what I would like to test in my potential master’s thesis: Is a mobile device capable of delivering first aid information to public untrained bystanders? Finally, hearing all the aspects of what can cause seizures and how basically anyone can be affected left me feeling grounded and grateful for my health and the choices I make in my daily life, such as not wearing a helmet when riding a bike.

Resources

https://selpers.com/ueber-selpers

https://selpers.com/epilepsie

https://selpers.com/epilepsie/epilepsie-verstehen

by tom.giess -

IMPULSE #3: Representation of Epilepsy in Back for Good (2017)

© Zum Goldenen Lamm GmbH & Co. KG, SWR

While conducting research about the topic of epilepsy I came across the EMDb – Epilepsy Movie Database and was curious what movies I would find and how epilepsy as a disease is represented in modern cinema. I decided to host a movie night accompanied with friends and decided to watch the following movie. For my part I payed attention to the way of how epilepsy is represented.

The german tragicomedy movie „Back for Good“, directed by Mia Spengler and released in 2017, deals about the story of former reality TV star Angie, who is forced to move back into her mother’s house in her hometown after going through drug withdrawal. She is about to live with her overprotective mother Monica and her pubescent sister Kiki, who was diagnosed with epilepsy and is bullied at school. Angie herself is moderately successful, but hopes to become a candidate for the next season of Dschungelcamp, a reality show on german television, and have a comeback. The movie incorporates a culture clash, where the b-list celebrity world meets the life in the province.

The relationship between the sisters is tense, but as soon as mother Monica needs to stay in hospital, Angie has to take responsibility for her sister Kiki. This unexpected burden lets the two sisters approach each other.

Although the movie incorporates comedy elements and has overall bizarre characteristics, expert opinions highlight the high fidelity of how epilepsy is portrayed. The movie puts emphasis on a realistic and responsible representation of epilepsy. It displays how a family structure can be complicated and societal stigmatization reinforces self-worth, self-perception and social isolation.

First of all, Angie did not know about her sister’s diagnosis. Not only because of their bad relationship with each other, her mother Monica decided to not tell her older daughter about it. It may be assumed that Monica does not want to put too much attention to her daughter’s disease, because Angie’s work as a TV star means publicity.

Kiki has to wear a noticeable helmet, which protects her in case she experiences an epileptic seizure. She feels ashamed to wear a helmet in school, which gives bullies at school a target and results in her own self-isolation. Her mother limits Kiki’s freedom in the way she takes care of her daughter. When Kiki becomes a victim of cyberbullying, her mother sees herself powerless. The movie plays with the contrast of irresponsible drug abuse and uncertain chronic illness, independence and dependence. This becomes clear, when Angie orders food at a fast food drive-in and Kiki lists, what she can’t eat because of her illness. When Angie and Kiki become closer, it is shown how rarely Angie knows something about her sister’s disease. Kiki needs to explain what can happen to her and how she experiences her individual form of epilepsy. Compared to her mother Monica, who acts withdrawing and protective, Angie is characterized by a more self-conscious and confrontative nature. As soon as she witnesses Kiki being bullied at school, she faces the bullies in an aggressive as well as violent way, making threats to Kiki’s schoolmates.

The jury of Deutsche Film- und Medienbewertung (FBW), a german governmental institution which reviews movies regarding their artistic, documentary or film-historical significance, awards Back for Good with the highest status „Prädikat besonders wertvoll“. Besides its cinematic quality, relevant aspects that led to this decision were the acting performance of main actress Kim Riedel (Angie) and the movie’s authentic and non-judging representation of the environment, where the story takes place. Another added value is the questioning of social tolerance and how to interact with people, that are different.

The movie got awarded in 2017 and 2018 as Young Talent Award of the DEFA foundation, Prize of the Jury of German-Language Film Critics, Best Film of Studio Hamburg and Biberacher Filmfestspielen as well as Best Debut Film of weekly journal Bunte.

Back for Good manages to show the challenges persons with epilepsy face on a daily basis by putting them into the context of a complex family history. Medical as well as social and emotional aspects and their impacts on affected people and their environment are integral part of the plot. By combining humor and seriousness, the film succeeds in making the subject of epilepsy accessible to a wider audience while promoting greater understanding and acceptance.

Resources

https://filmdatenbank.dgfe.info/index.html

https://www.fbw-filmbewertung.com/film/back_for_good

https://www.epd-film.de/filmkritiken/back-good

https://de.wikipedia.org/wiki/Back_for_Good_(Film)

by tom.giess -

#21 | Designing User Experience in eHealth Applications for Young-Age Epilepsy

The present master’s thesis „Designing User Experience in eHealth Applications for Young- Age Epilepsy“, submitted by Pietro Lentini at the Politecnico di Milano in the study year 2021/2022, deals with the needs and pain points of parents with children with epilepsy. Furthermore, the mobile application MirrorHR for epilepsy self-management was studied and the function for a new remote monitoring scenario was designed using a prototype.

The author formulated the following research questions: Why do parents of children with epilepsy use a self-management app for epilepsy? Which are their needs? Which are their pain points? How is the usability of MirrorHR? Are there aspects to improve? Considering the seizure detection feature in MirrorHR, are there new remote monitoring scenarios for children that the users would be interested in?

Level of design

The present work focuses primarily on background research using semi-structured qualitative interviews and a post-interview anonymous questionnaire. Nevertheless, the results of this study led to a practical prototype that was subsequently evaluated.

The work can be divided into the following five phases. It starts with the analysis of relevant literature, design principles and frameworks, case studies and the state of the art at that time. Second, the author investigated user needs and scenarios by conducting a user study on the MirrorHR application. It continues with the actual development of a prototype for a specific remote monitoring scenario. This is followed by a user evaluation of the study results and the prototype, and finally leads into a discussion section.

Degree of innovation

As the author notes, the existing MirrorHR app faces several challenges due to the fact that it is still a work in progress. One major challenge is the monitoring feature, which at the time only supported a short-range connection between a wearable and a smartphone. However, no usability study or user needs analysis was carried out.

It is stated that not only this app, but epilepsy self-management applications in general can benefit from the insights into user needs and pain points provided by this work. The examined scenario could be helpful for other mHealth applications focusing on children.

Independence

In addition to the literature review in the first part, the author attempted to verify his goals by applying relevant methods in the user study as well as in the design and evaluation of a prototype. This shows a high degree of independent work.

Outline and structure

The contents seem well structured and transparently organized, making it easy to navigate to specific parts of the chapters. Interestingly, the table of contents begins with a list of all figures, tables, abbreviations, and acronyms; followed by the chapters; and ends with the comprehensive appendices of interviews, questionnaires, findings, and prototype.

The chapters of this thesis show the following intended purposes: The relevant literature to get the context of the thesis, design frameworks and principles that have been used, reviewed case studies and the state of the art are shown in Chapter 2. It is followed by the methodological choices and how they have been applied in Chapter 3. Chapter 4 summarizes the results and analyses, leading to a discussion of the contributions and limitations of the studies in Chapter 5. The work concludes with a summary of all conclusions in Chapter 6.

As this research has been carried out at an Italian university, some of the fundamental parts of the study are only available in Italian. However, the entire written thesis is available in English.

Degree of communication

Although the topic of the thesis is mainly scientific, the author manages to write in a low- threshold and easy-to-understand language instead of complicating the readability with super-scientific language. Thorough definitions and background knowledge are provided in various subject areas to ensure that non-experts can follow the scientific explanations. All abbreviations and acronyms are listed in the Table of Contents, and transparency is provided

through attached interview transcripts and email communications. A discussion chapter shows the difficult circumstances and limitations under which this work had to be developed.

Scope of the work

The objectives of this thesis lies in understanding the motives of parents of children with epilepsy to choose self-management apps for epilepsy. This was done by examining user needs and pain points. Furthermore, the usability of the MirrorHR app, which is supported by the FightTheStroke Foundation, was evaluated and a specific monitoring scenario for this application was investigated.

Orthography and accuracy

There are no spelling or grammatical errors that might indicate careful proofreading. Specific terms are used correctly and are defined. The presentation of information is shown in correct citations and a structured list of sources, in accordance with academic standards. Methodology is adequately explained and documented at the end.

Literature

The present list of references appears to be well researched in a wide variety of scientific and industry media. This diversity includes official ISO definitions, specialized books and journals, reviews, web addresses, guidelines and scientific articles. The subject areas vary between medicine, healthcare, human-computer interaction, user-centered design, technology and behavioral sciences.

Conclusion

Taking into account the previous paragraphs, it can be stated that this master’s thesis makes a meaningful contribution to a very specialized field of application. It shows a high level of independent work to investigate the needs and concerns of parents with children with epilepsy and focuses on the evaluation and improvement of the MirrorHR application. Outline and structure are well organized and comprehensible. The written text is easy to understand and well thought out. Citations and references are in accordance with the appropriate scientific standard, and the appendices show great transparency. Finally, the author discusses the limitations of the studies, the implications of the Covid-19 pandemic and provides an outlook for future research.

Resources

Pietro Lentini. Designing User Experience in eHealth Applications for Young-Age Epilepsy. Retrieved October 29, 2024, from https://www.politesi.polimi.it/retrieve/8610722f-1401-487e-8fae-aee491ea275f/2022_12_Lentini_01.pdf

by tom.giess -

#20 | Demonstration video & reflections

At the end of this semester I would like to give a short demonstration of how my prototype works. Therefore I created a short video that shows the functionality of the prototype.

Reflections

All in all, I enjoyed the process of Design & Research this semester. This time the work was more hands-on, consolidating my research from the first semester into a rough prototype. I was able to overcome my initial doubts as to how I could make a valuable contribution to my chosen topic, as there are already existing solutions. The potential I saw in my idea was confirmed by the feedback interview I conducted with the Institut für Epilepsie in Graz.

As one can see, this prototype is at a very early stage. It needs to be refined based on future feedback, in it’s interaction logic and real content, as well as in the sound and visual design to address emotional perception as well. This prototype could be an test object in evaluation practices such as expert reviews, interviews and tests to further develop this concept.

Resources

Freesound.org. Downtown Vancouver BC Canada by theblockofsound235. Retrieved June 26, 2024, from https://freesound.org/people/theblockofsound235/sounds/350951/

Freesound.org. VIZZINI_Romain_2018_2019_Emergency alarm by univ_lyon3. Retrieved June 26, 2024, from https://freesound.org/people/univ_lyon3/sounds/443074/

Freesound.org. Busy cafeteria environment in university – Ambient by lastraindrop. Retrieved June 26, 2024, from https://freesound.org/people/lastraindrop/sounds/717748/

by tom.giess -

#19 | Thoughts on auditory cues

So far, I’ve spent most of my time on the structure of the app, which dictates what the sound needs to support, but I haven’t worked on the auditory cues yet. These cues should support first responders when they are unable to look at the phone while following instructions. As this semester is coming to an end, this will not make it into my final prototype, instead I have started a free association to extend the visual cues with auditory cues.

What is needed?

My first thoughts were three requirements: An alert-like sound to draw attention to the device, a voice that gives instructions as shown in the emergency steps, and loop functionality.

One requirement for the alarm tone is that it must be audible to everyone, everywhere, as much as possible. Some emergency situations may involve difficult sound environments, so the frequency and volume of the sound should be chosen appropriately.

The second requirement is a voice that gives instructions and supports the visual information on an auditory level. The first idea for customized emergency information about one’s specific condition was to have the voice recorded by the person with epilepsy itself. But this would increase the interaction costs, because users would have to double the information input: textual and verbal. Even if the concept would be extended to support more than one language, the effort would increase and become less feasible for people due to lack of language skills. Second, it is uncertain whether the recording quality and the way each user speaks are sufficient to be clearly understood.

For this reason, a generated voice based on text input would be more appropriate for such a concept. AI-based speech engines have gotten better over time and are able to convert text to speech with very little processing time. The technology is there and the results sound more natural and authentic than ever before. In the case of user-created emergency steps, the speech must be generated in the background after the text is entered, so that it can be played back without delay in the moment the emergency steps are opened.

The loop functionality requires infinite repetitions so that the sound does not have to be restarted manually, but it should also allow muting when not necessary or too intrusive.

Audio timeline

I also thought about when the sound should be used.

After an alarm is triggered automatically by sensors or manually by the affected person and the timer is running, the alarm sounds. This continues until a first responder initiates the emergency steps by pressing „Start first aid“.

Next, a voice reproduces what is displayed on the screen in a well-pronounced and clear way. This is played in a loop until a user swipes to see the next emergency step. In this way, each piece of information is extended aurally until the emergency steps are completed by the user.

The information on the following screens does not require further auditory cues.

by tom.giess -

#18 | Prototyping tailored emergency information

Now for the most important feature: Allowing people with epilepsy to tailor emergency information to their own form of the disease could actually make a difference, since epilepsy can manifest itself in many ways. I iterated on this for the digital prototype.

Start an alert manually

As I found out in my interview with the Epilepsy Institute in Graz, the use of sensors to detect an incoming seizure should be more precise and reliable. Also, many people do not feel the so-called aura before a seizure. For this reason, a warning to bystanders should be triggered automatically. But providing a manual way to start the alarm could make additional detection devices unnecessary for some people with epilepsy. So I rewrote the label on the app’s start screen to add the „manually“ hint.

Providing general and customized emergency information

In order to differentiate between the default pre-made content for general seizure care and the ability to display customized emergency information, I changed the selection component. I replaced the dropdown, mainly for multiple options, with a single switch between default and custom states to simplify the interaction.

The default „General seizure information“ cannot be customized, but is displayed if selected. Once a user selects „Custom Information“, each emergency step can be changed visually and textually in the input fields. At this point, the default information serves as a starting point so the user doesn’t have to start writing from scratch and can keep some information. In addition, users can optionally upload graphics or capture photos to visually support the points they are making.

Amount of emergency information

While designing the emergency information settings, I asked myself how much information should be displayed in the settings and what’s the maximum amount of information that people with epilepsy should create.

Because of the tricky circumstances in emergency situations that require short instructions, I decided to limit the number of steps to five and the ambulance information to no more than the default nine. The content of five steps is more likely to be remembered, but uncertain under these circumstances. Also it is easier to navigate between less steps. It is always possible and preferable to choose less information.

Aspects to be discussed and next steps

For the sake of customization, many unanswered questions came up during the prototyping process.

  • Custom emergency information: How do we bold text or add bullets? Do we need these aspects here?
  • User profile: Where do we customize information about the person with epilepsy, such as their name, picture, and how they want to address first responders before the emergency steps are displayed?
  • Organization of custom emergency steps: How do we delete or rearrange emergency steps? How do we reset custom emergency steps to the default content?
  • Thank you screen: Should the thank you screen be customizable and where can it be edited?

Answering these questions may be necessary in the future, but in order to validate this app concept, to see if potential users will even understand it and get value out of it, I will leave it at that for now.

by tom.giess -

#17 | Prototyping gratitude advancement

In order to improve the interaction and overall experience between the person with epilepsy and their first responder, I introduced a new idea in the paper prototype: Once the emergency steps are complete, first responders can optionally leave their contact information in case the person is unconscious or is taken by ambulance. Using the contact information, the person with epilepsy can contact them afterwards to show their gratitude. I iterated on this for the digital prototype.

Types of contact

The first thing I considered for this feature was how to get back to your first responder and what type of contact would be best for that purpose. As it is likely that both people will be strangers, the contact method should be as low-threshold as possible when it comes to personal data. Either leaving a phone number or an email address would meet these requirements from my point of view. Since the input is not mandatory, I gave the possibility to skip this step with a button.

Thoughts on individualization

During this iteration, a thought emerged. Reaching out personally could be one option, but leaving a personal message such as a video or voice recording could be another. The first option would require less effort in terms of how people with epilepsy have to set up their app, but the latter option could provide more direct feedback. However, a recording of any kind would need to be more generalized, as the circumstances of incidents can vary. For this reason, I decided to go with the first option, which seemed simpler.

End of usage

The last consideration was how to end the use of the app for a first responder after they have started the process, followed the emergency steps, completed the process, and optionally left contact information. Now that the first responder’s task is complete, their access to the smartphone should be minimized. This could be done by returning to the lock screen. If the person with epilepsy needs to rest for a while, or if medical professionals take over after the incident, it is still useful to provide access to the medical ID and make it visible on the lock screen.

Next steps

So far, I have focused mainly on the practical use of this prototype. But for a holistic user experience, the emotional aspect needs to be added in any case. This could be done by getting more graphical and defining the overall visual design.

by tom.giess -

#16 | Prototyping emergency steps

I iterated on my paper prototype by working on the emergency steps and putting more thought into it. For advanced interactivity, I decided to use Figma as a digital prototyping tool.

Added Done button

First, my paper prototype did not yet include an interaction to end an alert after a person with epilepsy has had a seizure. Considering all the possible interactions that need to be displayed on these screens, I decided to place a button next to the elapsed time and named it „Done“. Since this interaction is related to the whole screen and the elapsed time, this seemed to be the right area.

This position could also prevent people from unintentionally ending the emergency information. It is still questionable whether this button is needed on every single screen throughout the steps, but I think it makes sense.

However, the main interactions of displaying the medical ID or making an emergency call can remain in the bottom area this way.

Added confirmation to end emergency steps

To prevent unintentional exits, I also added a confirmation dialog to make sure people know when and if they really want to end the emergency steps.

Thoughts about displaying a person’s name

At the same time, I was thinking about where to display the name of the person with epilepsy. By giving first responders the ability to refer to a person with epilepsy by their name, I assume they will have a more personal address. Since the emergency step screens already have a lot of elements on them, I decided to display the name once at the beginning before going into the emergency steps.

Added overlay for „When to call an ambulance“

I also added a collapsible element to the prototype that contains information about when it is actually necessary for first responders to call an ambulance. This can be opened at any time during the emergency steps. This should prevent the user from making premature emergency calls that are not necessary in every situation. I tried to keep the information short and easy to scan.

Next steps

At this stage of the prototype, two supporting aspects of the emergency steps are still missing: Visual support through graphical material for each step, and auditory cues to make the whole process more noticeable and usable when not looking at the phone. These features will need to be added in further development.