Technically Sick Empowered Us

Thank you so much for listening to Season 1 of Technically Sick.  
 
I am so grateful to all of the guests this season, who vulnerably and courageously shared their stories and provided their guidance and expertise with us. It has been such an exciting experience to speak with people on the forefront of innovation about how we can utilize existing tech and what technological interventions are on the horizon.
We have spoken with innovators, physicians, and community members about how existing and future technology can support the chronic illness and disability community. From practical tips like using smart home devices or our phones to support day-to-day living to future advancement in wheelchairs and virtual reality, we have covered a variety of topics that I hope resonated with you. Perhaps my biggest takeaway from these conversations is that the more we call in members of the disability and chronic illness community to contribute to tech advancement, the higher likelihood that innovations will be created to benefit our day to day lives. 
 
I look forward to a world where technology is accessible and empowers all people, no matter their abilities, to live more independently.  
For more empowering content to support the health of you, your loved ones, and your communities, visit empoweredus.org to check out our other podcasts and projects. Follow the Empowered Us community on Instagram @empoweredusnetwork and Twitter @empowereduspod to stay up to date with all podcast happenings and to connect with us.  
 
Empowered Us is a storytelling and resource hub led by Good Days, a national nonprofit that lifts the burdens of chronic illness through assistance, advocacy, and awareness. Visit MyGoodDays.org to learn more. 

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Monica speaks with Jen Hardy, an author, podcast host, blogger, coach, and mother. In this episode, Jen shares some of the technologies and apps she uses to help manage parenting, working, and day-to-day life while living with chronic illnesses. 
"There were a lot of people complaining, ‘I'm so sick, I can't get up’, but no one was saying, ‘how do you live your life like that? How do you get through it and live a good life, even when you're like that?’. And so, I pursued it. I started a blog to help others like me.” - Jen Hardy 
 
Timestamps 01:59 How Jen started blogging 04:29 Jen’s favorite apps and gadgets for parenting 07:26 Recommended apps and gadgets for sleep 10:39 How Jen works from bed 14:25 Apps and gadgets for brain fog 16:47 Robot vacuums 18:43 Kitchen gadgets 22:26 Other helpful gadgets 28:51 Jen’s ideal tech 
Takeaway Learnings and Actionable Tips 1) Technology has the capacity to take on a lot of the parenting and home care exhaustion. From using home voice assistance, you can set up timers for when that dog needs to be walked, reminders of chores for the kids, and set up your device to be an intercom between rooms for additional communication.  
2) Many simple tech purchases can make a huge difference: audiobooks, speaker pillows, and even automated potato peelers are little changes that could possibly elevate your lifestyle and reduce effort 
3) There are a variety of apps programmed into your phone that can be so useful, such as the Notes and Reminders app for Apple users or for you Android users - Google Keep. Jen makes use of these to ensure that brain fog does not get in the way of her obligations and productivity  
4) If you are looking to find a bedside setup that's right for you, take a look into dorm rooms and tiny house setups for inspiration. These resources will show ideas of how to organize your small working spaces in creative ways. 

About the GuestJen Hardy is an author, podcast host, blogger, coach, and mother to seven children. In her work, she discusses what it's like to be a mom and an entrepreneur while managing her chronic illnesses.

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Monica speaks with Kristen Lopez, a writer and disability advocate in media and also our first community member guest. In this episode, Kristen shares her favorite kitchen devices and hacks to create more autonomy and reduce effort in the kitchen. 
 
“In a world where disabled people, you know, autonomy is so fleeting for us in many ways, food really does become this element of control, and not in a negative way, although it can be negative, but a way to take back that autonomy.” - Kristen Lopez 
 
Timestamps01:53 When Kristen realized technology would be such a big help in the kitchen 04:08 Kristen’s favorite kitchen gadgets and transformations 07:27 Products and services that have come out of the pandemic that have been beneficial to people with disabilities 09:16 The ideal disability items for those who are newly disabled 12:02 Finding easier recipes for cooking and autonomy 15:26 The impact of digital accessibility on cooking 18:42 Kitchen gadgets that help with time management and safety 21:14 Examples of ways that kitchen appliances are inaccessible 24:54 The lack of disabled representation in media 29:45 The cost effectiveness of using kitchen gadgets over food delivery 31:02 The stereotypes people with disabilities face around spending 34:23 The impact inflation has on the disabled community 37:31 Where Kristen sees technology going in the future 39:45 The importance of making tech easy to use 42:51 Kristen’s ideal tech 
Takeaway Learnings1. There are tech devices, resources, and apps out there to support you in the kitchen, but not all the tools are gonna be for you and some might require some trial and error. Don’t give up! Keep trying different tools and see what hacks will help support you the most.  
2. Sometimes simple accommodations are so much more effective and helpful than expensive innovations. Calling in the actual needs of the disability community allows for the right accommodations to be made when developing accessible tools.   
3. Cooking can bring joy and autonomy to people in the disabled community. Utilizing technology to help save your energy and reduce the overwhelm allows for more space to enjoy the process of making food. And, I’m gonna bet that cooking at home is going to save you some much-needed money. 
Actionable Tips 1. If you want to make your kitchen more accessible in a cost-effective way and you just don’t know where to begin, try reorganizing your kitchen to make the things you use regularly as accessible to you as possible. Look into the way that professional kitchens and bakeries are organized. 
2. If you’re interested in any of the tech that we mentioned, go and check out our show notes – all the products will be linked in the resources section. These are products that Kristen and I love, however they do not sponsor our show in any way. 

About Kristen LopezKristen Lopez is the TV Editor of IndieWire and a pop culture essayist whose work has been published at Variety, MTV, and Roger Ebert. She writes regularly on disability representation in media. In her free time she contributes to the classic film podcast, Ticklish Business. 

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Monica speaks with Lucy Greco, a Web Accessibility Evangelist for the Universities of California. In this episode, Lucy shares her personal experience navigating the education system as a disabled student and how she now supports other students to create learning conditions that work for them. 
“A person has to be highly educated to get an education, if you have a disability.” - Lucy Greco 
 
Timestamps01:58 When Lucy realized her personal and professional experience had come together to help the disability community 06:52 Lucy’s work with UC Berkeley and how it helps disabled students 07:39 The importance of remote access to education 13:20 Other types of tech that can help with college campus accessibility 15:56 Why it is so important to hire employees with disabilities 19:32 Why companies should work with universities and disability centers 21:09 Accessibility and education 23:10 The importance of universal design 27:18 The financial implications of being disabled 29:28 What is the process like to get accommodations in colleges and universities 32:32 How to better advocate for yourself 35:58 Lucy’s favorite technology 37:48 Virtual reality benefits for education 
Takeaway Learnings 1) Disabled students have so much to offer, but their capacities are being hindered by technologies that are often not taking their needs into consideration. 
2) In teaching disabled students how to use accessible technology, they are empowered to share those technologies and skills with others. 
3) There are a variety of technological innovations that can be utilized in educational settings like 3D printing for tactile learning, braille embossers, live scribe pens for annotation, and so much more. The key is to get these resources into the hands of the students that need them. 
4) The cost of accommodations are a huge burden on disabled students. Therefore, they often take longer to complete their degrees, and they still have to pay the extra tuition for extended time, which is ultimately inequitable. 
Actionable Tips1) Currently students and their guardians may not even be aware of the resources available to them. Make sure to reach out to the accessibility departments at your university and fight for your rights as much as feels possible. Everyone deserves a strong accessible education. 
2) If you are a developer, focus on universal and human centric design to create broad usability. Function must be prioritized over aesthetics. 
3) Consider hiring disabled developers to be a part of the design and innovation process to ensure that your product is easy for everyone to use, and to highlight possible blind spots in the developmental process. 
4) Many educators are not effectively trained and equipped to support and to provide resources to disabled students. If you are part of a school system, consider providing resource teachers and workshops to equip students with the best possibility to succeed in their education. 

About Lucy Greco Lucy Greco is the Web Accessibility Evangelist for UC Berkeley. She has been blind since birth. She first started using computers in 1985. Upon graduating from college, instead of continuing her interest in literature and physical therapy, Lucy became an accessible technology specialist. Since then, people have come to Lucy asking questions, such as: How can I experience email as a blind person? How can I experience using a word processor as a person with no hands? Lucy’s passion for access technology drove her to find the answers to these questions and more, and today she is working at improving her own and others skills through participation in the BATS community. 

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Monica speaks with Caitlin Schumann, a Product Manager for Firefly Health, a virtual-first care model. In this episode, Caitlin shares her personal experience as a developer and telehealth patient, new telehealth innovations in development, and how telehealth can create a more tailored, personal experience.
“[With telemedicine] clinicians can continue to practice and be creative in how they solve problems for their patients and our patients don't feel restricted to what they can get access to.” – Caitlin Schumann 

Timestamps02:04 How Firefly Health helps the disabled and chronic illness communities and Caitlin’s experience 04:25 Chronic disease management using telehealth 06:27 How telehealth provides more options for patients in rural areas 07:51 Urgent care via telehealth 08:57 Catching medical errors 10:48 The benefits of wearables 12:19 Benefits and challenges of medical devices patients can use at home 15:42 Recent advancements at Firefly 18:45 Cost savings with telehealth 21:34 Setbacks to keeping telehealth post-COVID 23:55 How to advocate for telehealth 26:06 Problems with a lack of centralized, universal medical records 29:23 Developing software in the healthcare field 30:29 The ultimate digital product for Firefly 31:39 Who has ownership over our medical records 34:45 Negatives of a universal medical record system 35:55 More choices in physicians with telehealth 39:26 Tech that Caitlin is looking forward to 
Takeaway Learnings 1) Telehealth has the capacity to aid your judgment in making big choices about whether you need to go to the emergency room or seek emergency treatment. In being able to speak with a physician remotely, they can provide their expertise on the best step forward. 
2) Telemedical intervention provides additional access to medical experts that might not be available within driving distance.   
3) Online medical care, such as telehealth, is progressing into more than just video calls. As Caitlin mentions, some platforms allow for you to take pictures of certain conditions for feedback, use wearables to track additional health data, and take risk assessments to ensure all preexisting conditions are being monitored.  
4) Some telehealth services are also focusing to aggregate data so that your medication and medical information is all in one place.   

Actionable Tips1) If you are in the telemedicine development space - examine the opportunities for additional innovation by speaking with patients and doctors about what would be the most helpful for medical intervention.  
2) If you are a patient - think about where telehealth intervention may be of help in your life or the lives of the people that you take care of. Consider when receiving care remotely would be of the most value to you. 
3) If you are a legislator or a government official - determine how passing telehealth reimbursement programs could benefit people in your state. 

About Caitlin Schumann Cait has dedicated her career to enabling better access to healthcare through virtual care and innovative care models. She started her career at Boston Children’s Hospital on the Innovation and Digital Health Accelerator. At Boston Children’s, Cait was responsible for many aspects of launching and growing the direct-to-patient Virtual Visits program, including the rapid acceleration of virtual care during 2020 of the COVID-19 pandemic. Currently, Cait is a Product Manager at Firefly Health leading the development and improvement of member experience for primary care patients and health plan members. 

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Monica speaks with Dr. Dustin Cotliar, a telemedicine-focused Physician and Health Policy Consultant. 
In this episode, Dr. Cotliar shares the benefits of telehealth from a doctor’s perspective and the many ways how this varied technology can be useful for patients. Monica and Dr. Cotliar will also discuss the financial benefits of telemedicine and the future innovations being developed in digital health. 
“Let's say I was your doctor, and I say, “You know what? We really need to get you some blood work. We're gonna have a nurse come to your house”. And then, “Oh, I'm going to have your prescriptions delivered and I'm going to make an appointment for you for a cat scan on this day”... You can really have much more time to do things for yourself, and do things that you care about, as opposed to traverse the healthcare system in a way that doesn't work for you.” - Dr. Dustin Cotliar 

Timestamps 2:04 Dr. Cotliar shares about the importance of telehealth from his perspective 5:01 Different applications for telehealth 6:08 Some benefits of telehealth for comfortability 7:10 COVID-19's impact on telehealth 8:17 The effects of COVID-19 on appointment availability 9:27 Roadblocks to increasing the use of telehealth 10:32 Options for improving the impacts of computer literacy on telehealth use 12:34 Ways to improve privacy with telehealth 13:25 How telehealth helps create privacy for patients 14:52 How telehealth can benefit care navigation 16:35 How to reduce healthcare costs with telehealth 17:39 Additional applications for telehealth for in-home treatment 19:26 How obtaining visual cues from patients during video visits can benefit their health 20:16 Building rapport with patients in telehealth 22:53 More on the comfort of having appointments at home 25:08 Creating more jobs and job longevity with telehealth 26:16 Using telehealth as a training tool 27:21 The possibility of telehealth creating more time for doctors to write progress notes and see more patients. 28:42 The future of telehealth 32:27 Dr. Cotliar’s ideal tech 34:11 The impact of COVID-19 on patients avoiding doctors offices 
Takeaway Learnings 1. Telehealth allows doctors to determine faster if a patient requires in-person emergency care or not.
2. Telehealth helps people with chronic illnesses and disabilities seek out consistent care without having to physically go to the doctor’s office.  
3. Telehealth can be used for more than just a doctor’s visit. The potential applications are limitless in considering remote care options.  

Actionable Tips 1. If you are a patient, consider giving a telehealth option a try the next time you seek out care.  
2. Think about utilizing wearables you may already own, such as a smart watch, in order to track data about your own health.  
3. If you are a physician, consider implementing telemedicine services or recommending these services to patients if their care feels like it could benefit from that. 

About Dr. Dustin CotliarDustin Cotliar is a future-centric Physician and Health Policy Consultant who is passionate about digital health, patient advocacy, and healthcare navigation. His research has been featured in articles by NPR, Politico and Vox, and CNBC. He enjoys helping private clients with complex medical needs leverage technology to find top doctors, get a second opinion, navigate insurance plans, fight medical bills, organize medical records, and communicate better with their medical team. He can be reached on Twitter and LinkedIn and would love to connect with those looking for assistance.   

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