From smartphones to tablets, apps, and health tracking devices, technology has the ability to change the way schizophrenia is treated and challenge dated thoughts on how people with schizophrenia use technology in our daily lives. In this episode of Inside Schizophrenia, host Rachel Star Withers, a diagnosed schizophrenic, and co-host Gabe Howard, review the top 4 schizophrenia-related smartphone apps and explore what’s holding technology innovations back in the area of schizophrenia treatment. CNET senior editor, Alison DeNisco Rayome, who leads the series Tech For A Better World, joins to highlight recent advancements in the realm of technology evolution for people with disabilities.
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Alison DeNisco Rayome is a senior editor at CNET and leads the series Tech For A Better World. CNET’s Tech for A Better World highlights the growing diversity of the technology ecosystem, and the people who are creating products to improve our lives and our communities.
Rachel Star Withers creates videos documenting her schizophrenia, ways to manage and let others like her know they are not alone and can still live an amazing life. She has written Lil Broken Star: Understanding Schizophrenia for Kids and a tool for schizophrenics, To See in the Dark: Hallucination and Delusion Journal. Fun Fact: She has wrestled alligators.
To learn more about Rachel, please visit her website, RachelStarLive.com.
Gabe Howard is an award-winning writer and speaker who lives with bipolar disorder. He is the author of the popular book, Mental Illness is an Asshole and other Observations, available from Amazon; signed copies are also available directly from the author.
To learn more about Gabe, please visit his website, gabehoward.com.
Producer’s Note: Please be mindful that this transcript has been computer generated and therefore may contain inaccuracies and grammar errors. Thank you.
Announcer: You’re listening to Inside Schizophrenia. Hosted by Rachel Star Withers, an advocate who lives openly with Schizophrenia. We’re talking to experts about all aspects of life with this condition. Welcome to the show!
Rachel Star Withers: Welcome to Inside Schizophrenia, a Healthline Media podcast. I’m your host, Rachel Star Withers, here with my great co-host, Gabe Howard. And this episode of Inside Schizophrenia is sponsored by Intra-Cellular Therapies. From smartphones to tablets, apps, health tracking devices, technology has the ability to change the way schizophrenia is treated and challenge dated thoughts on how people with schizophrenia navigate the world around us.
Gabe Howard: And later on in the show, we’ll be talking to a senior editor over at CNET who leads the series Tech for a Better World, which explores growing diversity of the technology ecosystem and the people who are creating products to improve our lives and our communities.
Rachel Star Withers: Now, Gabe, before we get into schizophrenia related tech, let’s just talk about how amazing normal tech is. The advancements that just normal tech has made in making my life easier. For having a severe mental disorder, I got to be honest, the biggest improvement has come with GPS, the fact that I can walk around with GPS in my pocket. I use it constantly. I use it even when I’m driving places like I know where I’m going, because my thoughts get very confused. And it’s almost kind of like comforting to me to have that up there as a backup. I’ve even cheated before. Like, when I go someplace like to a new doctor’s office or even just a normal like facility? And I’ll look it up in the maps where you could go to 3-D view. So I’ll like look at the different buildings. That way, I don’t freak out when I’m there.
Gabe Howard: I’m with you, Rachel. Knowledge is power. But before smartphones, GPS and even when the Internet was barely a thing back when you MapQuest-ed directions, what I would do is I would I would do a dry run. That’s what I always called it. So if I had a new doctor’s appointment, a job interview, I had to go someplace new, even if it was someplace fun, like to a concert hall or a venue that I was excited about. I would drive the day before because I wanted to know what the building looked like. I wanted to know what the parking was like. I just wanted to feel a sense of comfort and security. Much of that can be done on the Internet now, both in terms of like you said, you can see what the building looks like right online. Rachel, it’s not even just being able to see it online without leaving your house via like 3-D maps. It’s also about being able to Google what is parking like at the local concert venue? So you can read other people’s experiences and really get a jump ahead. And people are sharing hints and tips, right? Hey, go out the back exit. Wait 20 minutes and it clears out. All of this provides a lot of security and knowledge and somebody who suffers from anxiety and paranoia and depression, it’s nice to have this information and it’s all the knowledge of the world in my teeny tiny little cell phone I carry in my pocket.
Rachel Star Withers: When I was going to college, my biggest issues that I had wasn’t dealing with, you know, scary hallucinations that like distracted me from class. Wasn’t, having a breakdown or a psychotic episode in class. It was getting lost in the halls. That was the most frustrating thing. I would be in the wrong building. I would be on the wrong floor. I would have to ask other students, people like, hi, and this is it like, you know, towards the end of the school year, this isn’t like my first day on campus. I’m lost. This is like a continual I’m lost week to week to week. And looking back now, I wish smartphones had been at the level that they are now. Like my life would have been so much easier just navigating a college campus.
Gabe Howard: The thing we want people to keep in mind is that technology has improved lives just hard stop. Right? These things are beneficial and obviously some of that benefit is going to impact our community.
Rachel Star Withers: And when you think it just with our phones, it’s not just about people with disabilities, but also their loved ones, their families, their friends. You know, we are able to have this location tracking. I know that my mom worries so much less now that she
Gabe Howard: Can track you.
Rachel Star Withers: I was going to say, well, yeah, I know that my mom worries so much less that I have a smartphone because she is able to find my location. And that is something between the person with schizophrenia. I don’t suggest anyone out there trying to like put some kind of secret tracker on your loved ones’ phone. That’s not what I’m saying. But it is. It’s reassuring that, hey, if something happens, they’re able to figure out where Rachel’s phone was last and hopefully where Rachel was.
Gabe Howard: The reality is, is that technology has improved everyone’s lives and people who live with schizophrenia are part of the everyone. So we, of course, use technology to make our lives better in the way that is best for us, whether it’s a calendar reminder to take our medication or go to our doctor’s appointments, whether it’s what you talked about, Rachel, and your friends, family loved one or support staff being able to share with them where you are. So just in case something happens, there’s that level of comfort, which, of course, makes the people who love us feel better and gives us protection if we want that. I really like what you said there about that partnership. Just don’t go tracking people. Utilize the technology to make lives better. But Rachel, my specific question to you. I’m honestly not sure of the answer. I’m aware of many products for like depression and anxiety. And I’m aware of products even on the physical side to track various things. But what about schizophrenia? Are there specific apps for people living with schizophrenia?
Rachel Star Withers: It’s amazing because we have all these digital tools out and the possibilities are endless. They’re able to provide assessments, they’re able to capture our mood states and track us. They’re able to give warnings when a person might be entering a depressive state or, for instance, that could be used to hopefully figure out if someone’s entering a psychotic state. They have more apps now to track if someone is maybe entering a manic state by tracking are you doing more phone calls, more texts at different times of the night? You know, all this incredible stuff. But when you actually look, is this technology being utilized for people with schizophrenia? Unfortunately, there is a huge deficit in those tools. That was staggering to me. I honestly, Gabe, I was so excited about this episode because I love tech and I’m like, I’m going to find so many great new apps and hopefully like low cost tech that I could try out. And I did not find those things. All of the stuff I found I already knew about, which was crazy because I hadn’t really done any recent searches the past two, three years.
Gabe Howard: Why do you think that is? I mean, let’s throw some numbers at you, Rachel. Schizophrenia cost the U.S. an estimated approximate $281.6 billion in 2020. And you’ve got to consider these direct costs are made up of health care, incarceration, supportive housing and homelessness. Forget about the human toll and our compassion and morals and ethical obligations to support people who are sick. Let’s just talk about the money that’s out there, $281.6 billion in 2020. Why? Why are they ignoring you?
Rachel Star Withers: One of the main reasons is an unfortunately outdated and incorrect belief that people with schizophrenia are scared of technology. Over and over, when you pull up these studies, that’s one of the first things it says in the intro, is that, oh, there’s so many possibilities, but these people with schizophrenia. Who knows if they can handle it. And this belief comes from a few different areas. One of them is thought broadcasting. We haven’t really spoken on it on the show, which I think we definitely need to, Gabe, in detail in a future episode, but thought broadcasting is a positive symptom of schizophrenia. So, it’s a delusion where a person suffering believes that other people know your thoughts, that they somehow know your thoughts without you saying them. Now, it’s a very common symptom of schizophrenia. I’ve actually had this exact symptom many times. However, the extreme example or the exacerbation of this symptom is that the person with schizophrenia believes that their thoughts are being broadcast over TV and radio waves. Now, Gabe, right there, I have to stop because the phrase “radio waves.” When is the last time you heard anyone say radio waves?
Gabe Howard: I was actually thinking that because obviously delusions and hallucinations, they’re made up of things that the person with schizophrenia knows. So I imagine somebody your age, even my age, Rachel, I’m not saying that they haven’t heard of the concept of radio waves. I’m just saying that it’s not part of the culture in the way that it was in the 30s, 40s, 50s and 60s. We’re much more likely to say airwaves just on and on and on.
Rachel Star Withers: Mm-hmm.
Gabe Howard: Our language has evolved and changed. Also, everything is cable now. Right?
Rachel Star Withers: Well.
Gabe Howard: I mean, even, even satellite radio.
Rachel Star Withers: I mean, I just think Internet,
Gabe Howard: It’s different.
Rachel Star Withers: Internet,
Gabe Howard: Yeah.
Rachel Star Withers: I mean, no,
Gabe Howard: Streaming.
Rachel Star Withers: None of the youths, the youth that I work with, Gabe, ever turn on their radio. Ok. They use, it would be crazy when I used to work with them in classes because I’d let them put their phone on and they would be streaming YouTube music. There was no radio station they used. They used an app. And what’s interesting is that and I’m not saying it’s never happened, OK, but what’s interesting is that most people who have thought broadcasting do not report that the Internet is one of the sources that is broadcasting the thoughts. So all of these bases that they have are really very dated of people with schizophrenia saying that their thoughts were broadcasted. Honestly, it was documented. You know, 70s, 80s. It’s a very dated thought. Another issue with schizophrenia and this belief is a paranoid delusion. So, yes, very common. You know, I’ve talked many times that my original diagnosis was paranoid schizophrenia. And the delusion can evolve into the thought that you’re being followed, that you’re being tracked, that your phone is bugged. And I got to stop because Gabe, I know right now, if I asked any high schooler that your phone is bugged, they’re going to have no clue what that means.
Rachel Star Withers: That that’s, again, a dated term. We know what it means. But most teens nowadays, like they know their phones are listening. Like, Gabe, right now, if I loud enough say, hey, Siri, my phone’s going to answer back from the other room, which is really creepy in a way, but it’s also relaxing. My TV, I can like say, hey, Alexa. Ok. And it responds like, what do you want to look at, Rachel? And that’s so creepy. But it’s a generational gap, I think, in a lot of ways, because so many people. Gabe, I don’t know if I can say your age here, but you’re in your 40s. I’m in my 30s. We’re used to being tracked. I assume my phone is tracking me. Like that’s how GPS works. I even let my Jimmy John’s sub sandwich app track me because I like my free rewards. So, it is interesting because that’s always being brought up as people with schizophrenia won’t use these apps because they’re afraid of being tracked. And I’m like, well, if they have a smartphone, they probably already know that they’re being tracked anyway constantly. Like that’s just part of owning a smartphone, I think.
Gabe Howard: It’s important to boil this down to an element of stigma, right? Whenever you say people with schizophrenia, don’t you have to decide is that true or is that just something you believe? And study after study after study shows that people living with schizophrenia use digital technology generally as much as the rest of the population. Is there somebody with schizophrenia that doesn’t trust technology? Absolutely.
Rachel Star Withers: Yes.
Gabe Howard: We’re not saying that it’s impossible. But listen, I have family members right now with no mental illness whatsoever that hate cell phones. My grandfather among them, he just doesn’t like them. He thinks they’re dumb. He wants to be left alone. It’s well represented in the population that not everybody likes everything. But for some reason, with schizophrenia, it’s oh, people with schizophrenia don’t like that. There just isn’t the data to back that up. So now we have to move to the next step that if there’s not data to back it up, are people with schizophrenia being left out? Are they missing out? Could their lives be improved? But I, as the practical one, also say there’s a giant market here that is being underserved. Develop some apps for people with schizophrenia. You might make a profit. Listen, I would love to boil this down to you should do this because it’s the right thing to do. But yeah, forget that, venture capital should invest in this.
Rachel Star Withers: Yeah.
Gabe Howard: A lot of people live with schizophrenia and psychosis. I don’t even necessarily know that you need an app for schizophrenia. You need an app for psychosis or an app for serious and persistent mental illness, including schizophrenia. But I’ve noticed that there are some apps out there that focus on some of these more significant and serious mental illnesses. But they always stop short of saying that they will help people with schizophrenia. They say for liability reasons. And it’s like, oh, that’s so sad. You think that helping somebody with schizophrenia will make you liable for something? Oh, like what a missed opportunity in so many arenas.
Rachel Star Withers: And when you think when is the main age that schizophrenia comes out? We’ve said it over and over on the show. It is the late teens to early 20s. That is the typical age that schizophrenia comes out. What age group, Gabe, do you think, uses technology the most?
Gabe Howard: 18 to 24
Rachel Star Withers: Exactly.
Gabe Howard: Young adults.
Rachel Star Withers: Exactly, it’s so funny because it’s like this is what they’re always saying, this is when schizophrenia comes out, this is the big time for people realizing they have schizophrenia and there’s almost no tech to help with that. Like, these are the people who are on the Internet, who are using the apps, who are using the latest stuff when these symptoms start to emerge. I myself see it as a huge wasted opportunity for researchers and whatnot out there. This is the time to reach out to people who have schizophrenia. And I know. And that misses, it misses me completely. But I would have loved like I think just how much I used the Internet when I was in high school and the Internet was like a baby. It was so boring back then. I can’t even imagine nowadays what could be possible. What’s also very interesting is one survey of psychiatric patients across the U.S. actually found that 70% were interested in using digital technologies such as smartphones to monitor their own health. Seventy percent. And that was also across different ages. That wasn’t just teens. That was psychiatric patients who had been hospitalized for serious mental illnesses. That alone, that number makes me think there’s a huge money making market, with that many people want to take an active role in their recovery. Studies also show that people living with schizophrenia use digital technology just as much as the rest of the population. Now, of course, I do have to put a little pin in that, because we have to think about that as we spoke about on the show. There are issues with incarceration. There are issues with homelessness. So, yes, there are times when you can’t be like, well, every person with schizophrenia uses tech the same. No, there are different levels to everything. But the general population, it has shown that people with schizophrenia use tech just as much.
Gabe Howard: Let’s talk about the pros and cons of using technology to help with the treatment or the management of schizophrenia.
Rachel Star Withers: Yes, Gabe, as with anything, there are pros and there are cons, let’s hit those pros first. One very interesting one that I liked was that online administered screeners for psychosis and serious mental illnesses actually demonstrated to be more predictive than a clinician administered interview. They think this is because that people tend to feel more open on the Internet versus sitting with a person, especially a person that they don’t know very well. I know for me, that was one of my biggest fears when I met with doctors for the first time. One reason I didn’t get properly diagnosed for a year was that I was afraid to tell them certain things. So I can see this. That would be me. I would be way more open in an online screener than I would with a person asking me the questions straight on. Another thing is text based message reminders. Ok, so not just like your calendar popping up a reminder, but you actually being texted a reminder. That has been found that people with serious mental disorders, especially schizophrenia, actually respond really well to text based reminders, even if it’s coming from a program. So like kind of a set app that might send you or even a program set up through the doctor’s office. I know my doctor’s office, they text me a reminder that, hey, tomorrow you have a meeting with so-and-so. They found out that people with schizophrenia actually adhere really well to these techniques, especially when it comes to reminding them to take their medication.
Rachel Star Withers: And even real life things, for instance, reminders to pay their rent, reminders to drink plenty of water during the day, reminders to eat. And this type of therapy is actually called hovering therapy. They also found out that for the majority of people living with schizophrenia, it caused them to be more engaged in their own treatment plans. I didn’t realize that was like a systematic thing, Gabe, this whole hover treatment. I think it’s used for everything because even my like my normal doctor sends me these text message reminders, but I will say I like them. I definitely respond to them much quicker than just a notification popping up from my calendar. And you have so many apps now that allow tracking of symptoms and mood over time. The really good thing is that that allows patients to take that active role in their treatment plans, but it also lets them see over time. I know it’s one thing for me to be like, yeah, I feel like I’m better, but when I’m able to scroll back and look through months where I’ve been tracking stuff and be like, oh, wow, look how far I’ve come. Or, Oh, wow, I’ve been doing bad lately. I didn’t realize how bad I’d gotten when I compare myself to three months ago. So that’s one of the really cool things, is that I think like never before people are able to take such an active part in their own treatment and dealing with schizophrenia and other serious mental disorders.
Gabe Howard: So those are all the pros, but what are the cons?
Rachel Star Withers: Oh, you know, there’s always going to be cons, Gabe. For one, lower face-to-face accountability. Digital tools can be great. But, you know, it’s not for everybody. Some people do need to see someone and be there in person. Now, I say like that’s with everything, because here I’ve been saying all this great stuff about calendars and yet right beside me, Gabe, I have my little paper calendar, which is still my go to over my phone. I always carry this because for whatever reason, that helps me. So, yeah, you can’t say that the digital tool is going to replace doctors, therapists, period. That’s just not going to happen. We all have different needs. The other thing is that you can’t just rely on apps to catch psychotic episodes. You can’t just assume that, OK, well, this is going to catch everything. That goes back to that liability we were talking about. You can’t just assume. They’re tools. They’re meant to help catch these things. But as we all know, going to a doctor once a week isn’t going to catch every psychotic episode either. There’s a lot of ways to fall through the cracks. Also, there’s a lot of ways that psychotic episodes just come up out of nowhere. Another issue is with digital tools. You know, the person with schizophrenia has to choose to consistently use them. They also have to choose to be truthful. Any of us could easily fake an assessment.
Rachel Star Withers: It’s pretty easy to say, no, I’m not having hallucinations. Gabe, that comes up a lot in the different articles arguing against these different tools and even the funding of these tools. But I’m like I feel like that could be done in person, too. I can lie on an assessment. The other big issue, of course, is privacy breaches. That’s going on with banks, with with almost anything Facebook, privacy breaches, all that kind of stuff. It is another level of worry when we’re talking about mental health stuff. Let’s say you are using an app to talk back and forth with your doctor and you’re putting down very intimate thoughts on there. Very intimate struggles of hallucinations. And there was a privacy breach and that got out into the public, that could ruin certain people’s careers. That is a very real worry that people have. I feel that the same thing could happen if they were to hack a doctor’s office, though. You know, so there are cons and pros to all of this. I feel that the cons, though, aren’t exactly what’s holding tech back for schizophrenia. I don’t think any of the cons are strong enough to be like, well, this is why we can’t make apps. We can’t make new tech just for people with schizophrenia.
Gabe Howard: Now, I know we’ve talked about the fact that there’s not a lot of schizophrenia specific apps in the space, but there are some and we want to highlight those. I know you can’t go through all of them, but can you go through some of the more, I want to say predominant ones?
Rachel Star Withers: Oh, Gabe, the past month I have spent so, so much time trying out so many different apps on my phone, and I kid you not. I have downloaded and deleted over 50. Fifty mental health apps this past month, so I have been all across the board. Now, to be clear, before we get into this, none of these apps are paying us to talk about them, and none of them have even reached out to us. We didn’t exactly let anyone know we were doing this episode. These are the apps that are widely available right now to people with schizophrenia who may be listening and their loved ones. One of the main ones that’s going to pop up is called Schizophrenia Health Storylines, and it’s actually developed in partnership with the Schizophrenia and Related Disorders Alliance of America. So, a very big organization there. Definitely check out their website if you haven’t, for schizophrenia related information. This app actually lets you track symptoms, moods, daily routines. It lets you set up medication reminders, appointment reminders, and it has a journal option on there, which you can kind of keep private or you can share with people.
Rachel Star Withers: Now, what’s really cool about the Schizophrenia Health Storylines app is that it lets you add people. If your doctor uses this counselor or whoever, you can actually add them and talk back and forth with them. And you can add even just normal family and friends if you make these little circles of support. So if you are having struggles with hallucinations, let’s say you have your family circle of support. You can like let them know and you can even be as intimate as you want on there saying it’s like a scale of one to 10, how bad your hallucinations are. So I really like that. This was the only app I could find out there that allowed you to bring in other people and really let them know intimately, hey, what’s going on? I think certain doctor’s office have their own apps that allow that, but it’s just between you and the doctor.
Rachel Star Withers: This was the only one that allowed a caregiver to take an active role. So definitely out there, friends, family, caregivers. This was a really cool app just for doing that. I highly suggest that one. I like that the medication tracker on it, when you go to type in a medication, all the meds pop up and common dosages pop up for you. Across the board, one of the best schizophrenia related apps out there, and I highly suggest it. Another one that’s interesting is called the mindLAMP 2. And it is a research and clinical app. Do keep in mind that it’s being used to research schizophrenia and other brain disorders. They encode your info, but it is being used for that purpose and it actually has little brain games to check your thinking. They’re very easy games. I kind of put them on the level of like, you know, the Candy Crush. And the way they check your brain functioning is it’s through surveys. My issue was that a lot of the surveys, like it was just worded weird. If you’ve ever done any of these kind of clinical tests where it’s been like I hallucinated today, and then it’s like you have to say several times a day, half the day, like it was just the very odd wording that a lot of the questions didn’t really make sense for the answers.
Rachel Star Withers: It was interesting, like to play the different games and like kind of see, are you better today than you were yesterday? So it could give some people kind of a heads up on their mental state. The other thing I will say, it includes tutorials for grounding yourself, which is basically meditation and breathing. But if you’re having a psychotic episode, if you’re having issues with hallucinations, this was a nice little touch. I like that they included that.
Gabe Howard: You know, Rachel, as you’re talking about these apps and I know you’ve got a few more, but it reminds me of things that I used to do on paper that could now be done on an app. And the one that comes to mind is journaling. You know, I used to mood track and journal. You know, the different words. I mean, essentially the same thing. But I did it on paper. And, you know, I just wrote on a calendar, you know, one through three, you know, one was a good day. Two is a mediocre day. Three was a bad day. I wrote down what time I got up, what time I went to bed, you know, so that I could track sleep. And then I would bring that in and show it to my psychiatrist. And I did all of this on paper. It was like a desk blotter. Right? There are a million journaling apps. And while they’re not, quote/unquote, designed to treat schizophrenia, anybody living with schizophrenia who journals could absolutely benefit from that app. So it’s sometimes there’s apps out there that take the place of things that we’re doing, quote/unquote, manually.
Rachel Star Withers: Absolutely. And some of these apps that I’m mentioning actually have a journaling component to them. But you can find so many apps that are just focused on journaling or diary entries that, you know, that it was made for that. So, you know, kind of like your own personal needs, whatever it is, like, you know, I’m not a big journal or type Gabe. I like being able to just go through and click the checklist. Like, I like to just say, click, this was my mood today. Click, click, click. I don’t want to write about my mood. I like it spelled out for me. Just let me pick the little buttons. But no, it’s up to like each person. You know what works best for managing your serious mental disorder, whether it is bipolar or schizophrenia. These next two that I’m going to talk about, our third and fourth ones are actually made by the American Psychiatric Association. That’s a huge organization. These are some hard core apps. SMI Adviser, Serious Mental Illness Adviser. And honestly, this is just a knowledge based app. The really good thing for friends and family is that it has a lot of topics in there. For instance, navigating the criminal justice system, substance abuse and having a mental disorder. This was the only app that I found that dealt deeply into kind of topics like that. I like that this was next level, real world stuff.
Rachel Star Withers: I like that it was catered not just towards people with schizophrenia, but those in their lives like, hey, I have a loved one and I need help navigating helping them. And they’re in the prison system. So that was definitely something I suggest everyone out there with schizophrenia and someone in your life with it to download the SMI Adviser by the American Psychiatric Association. The other good thing about there is it does have a treatment locator and a list of free services. So if you’re out there and you’re struggling, especially if the person with schizophrenia in your life is not in the same state as you. This is a very handy app just to be able to locate, type in different zip codes, and be able to find what is available in the area. A very strong one for the loved ones out there, people who are worried, especially parents of adult children with schizophrenia. This was very helpful. And the last one I want to highlight also by the American Psychiatric Association is the My Mental Health Crisis Plan. This allows you to make a very easy psychiatric advance directive. This allows you to pick a decision maker, a court appointed guardian. It allows you to actually have your hospital preferences and even your treatment preferences regarding emergency treatment. It is very easy to use.
Rachel Star Withers: It is just like a little seven steps. And you put in this is what I want to happen should I have a mental breakdown and need to be hospitalized. If you have children, it actually lets you put who you want to look over your children. It gets very, very specific on what treatments you are willing to have. What I liked about it was that you can then send it to people and it lets you know for wherever you are located at state wise, what you need to do to make it official. So some of them, you just finish right there. Just having it makes it official. Other states that might need to be notarized, it might need to be signed off by a doctor, etc. I highly suggest this for anyone out there with a serious mental disorder who, you know, winding up in care is a real possibility. Myself is included in that. Those four apps that are schizophrenia related. I learned a lot just from using those and I got a lot out of all four of those.
Gabe Howard: Thank you so much, I think that’s awesome and I like that you included stuff for caregivers and people living with schizophrenia, because as we talked about on the show before, the partnership is so vital. One of the things that I was thinking about when you were going through all of these different apps is that stigma and misinformation. Sometimes people hear, hey, there’s an app that can help you manage schizophrenia, and people think, oh, well, are you saying that they don’t need caregivers anymore? Are you saying that you don’t need a support team or are you saying that they don’t need a doctor? No, it’s just another tool. And I think it’s important to address that, because I know that when peer support came around, the community was like, well, are you saying that people with schizophrenia don’t need doctors or therapists or? No, nobody’s saying any of that at all. We’re just saying that peer support is another helpful tool to help manage schizophrenia, just like some of these apps that you just mentioned are another helpful tool to help manage schizophrenia. I think it’s just important to bring that up because new things scare people, myself included, myself included. What are your thoughts on all of that? People who think, well, you know, you can’t treat schizophrenia with an app. That’s just a stupid thing to say.
Rachel Star Withers: That goes back to just the small technological advances that have made my life so much easier over the past few years. You know, I’m just like, hey, if apps can help in any way, no one is saying that, yes, there’s just going to be a magical app or a magical device that’s made the next few years that suddenly we don’t need doctors, we don’t need help from our family and our friends. That’s not what we’re saying. But any tool to assist I’m all for and I will gladly like I said, I was excited, honestly, to have an excuse to try out all these apps this past month. I was like, hey, these are things I should have done a while ago. But I’ve been dragging my feet on. Because I actually had the Schizophrenia Health Storylines app already on my phone, and I’ve probably had it on my phone, at least for a year without ever opening it up. So that was that was just kind of like, hey, this is the push I needed. And once I started using it, I was like, oh, wow, this is really great. This is actually way better than the six different apps I was using to do the exact same thing.
Gabe Howard: We’ll be right back after a word from our sponsors.
Commercial Break
Rachel Star Withers: And we’re back discussing tech and schizophrenia.
Gabe Howard: Rachel, we have an incredible guest. Can you tell us about her?
Rachel Star Withers: Let’s start off with what CNET is, if you’re not sure. CNET is like one of the big tech websites. So it’s like if we’re going to talk about tech, we have to go to some experts. That’s why we reached out to them. And I was excited not only to talk to one of their head people, but she is actually over a specific program. And this program focuses on tech for improving our lives and our community.
Gabe Howard: And we’ll play that interview now.
Rachel Star Withers: We’re here talking with Alison DeNisco Rayome, who is the senior editor at CNET, and she also leads the tech team for Tech for a Better World. Thank you so much, Alison, for being here. First of all, what is Tech for a Better World?
Alison DeNisco Rayome: Thank you so much for having me. Tech for a Better World is a series of stories that we publish on CNET about the diverse tech teams that are creating products that really are going to improve our lives and society as a whole.
Rachel Star Withers: That’s amazing, and that’s what we’re talking about here on Inside Schizophrenia is all of the emerging tech and how it can help people with serious mental disorders. What technology are you most excited about right now?
Alison DeNisco Rayome: Well, it’s such a big question because there are so many fascinating things happening right now across all these different fields, including medicine and mental health. But bringing it down to the level of emerging technologies that were already kind of seeing in our day to day lives, I’m personally really excited about advances that we’re seeing in map and directional technology. Like I’m someone who cannot find my way out of a paper bag. I still get confused driving around my very small hometown. So when I see some upcoming updates, like, for example, in Apple Maps, they’re going to include things like an augmented reality feature that lets you scan a nearby building with your phone so you can better figure out where you’re walking and which direction you’re going in. That’s super useful to me. And we’re also seeing things like in Google Maps, new updates that are going to let you find more detailed street maps for driving, but also for walking and for wheelchair accessibility, which is a really great step forward there.
Rachel Star Withers: Wow, that’s really cool. I always know that, yeah, when I have to start out like with the, when I’m in like a new city and I have to use the little map I always like takes me a good 10 minutes to get pointed in the right direction.
Alison DeNisco Rayome: Exactly, I always go the wrong way first.
Rachel Star Withers: How have you seen technology evolve in the past few years for people with disabilities?
Alison DeNisco Rayome: We’ve just already seen some major strides in the past few years in terms of technology, accessibility for people with disabilities, and in many cases that’s been spurred along by the pandemic, which we
Rachel Star Withers: Yes.
Alison DeNisco Rayome: Can get more into. But, you know, as always, we still have a very long way to go. I think tech companies on the whole have become more aware of differently abled people who are using their products and are kind of slowly building in new accessibility features. But unfortunately, we still see a lot of problems. Something disability rights advocates say that companies really need to be doing is building in that accessibility from the start instead of adding it on later. It should also really be a part of computer science and engineering education. And people with the actual disability or mental health issue or wherever it may be should really be involved in actually creating the tech that they’re going to use and have a voice in that process. Companies don’t do these things. They’re really leaving behind a massive population. You know, over a billion people worldwide are estimated to live with some form of a disability, according to the World Health Organization. And it just benefits everybody when your products are actually inclusive.
Rachel Star Withers: I actually have never thought about that. What you just said, they’re making it with them in mind as opposed to fixing it after the fact.
Alison DeNisco Rayome: Right, exactly.
Rachel Star Withers: That’s a really good point.
Alison DeNisco Rayome: And that tends to be the approach that we see, unfortunately.
Rachel Star Withers: And how do you think the pandemic has played a role in this evolution?
Alison DeNisco Rayome: It seems like it’s been a real mix of frustration and also relief for a lot of people with disabilities during the pandemic, which one of my colleagues, Abrar Al-Heeti, has reported on pretty extensively. But what we found was that a lot of accommodations that people in this population have been asking for for years, so things like remote work, live streaming conferences, telehealth appointments, had in the past been called, you know, too complex to do. But now during the pandemic, were suddenly available to everyone, which is great, but also shows that once able bodied people needed an accommodation, it happened right away. So now the hope is that even with more people getting vaccinated and some things opening up again, some of these accommodations will remain in place for those who need them. And I think the pandemic also really highlighted that we still have a lot of problems with making sure people with disabilities and particularly those in rural areas, have access to high speed Internet and other tools they might need to work or go to appointments from home. So, again, we’ve seen some good movement that will hopefully stick around, but there’s still a long way to go here.
Rachel Star Withers: I definitely agree. We’ve mentioned this on the show quite a few times, just, yeah, how this has become such like out of the blue. It went from nobody doing it to suddenly, like all the doctors, you know, had
Alison DeNisco Rayome: Mm-hmm.
Rachel Star Withers: To switch over to telehealth. And there were so many, you know, hold outs for so long. And then overnight it was like, OK, now we’re all going to do it.
Alison DeNisco Rayome: Oh, definitely, and it opens it up to so many more people, too, which is awesome.
Rachel Star Withers: Where do you think like that market of the tele-therapy? The kind of tele-doctor appointments? Where do you think that might be branching into next?
Alison DeNisco Rayome: Well, we’ve definitely seen massive growth in mental health and mindfulness focused apps and services and telehealth appointments, which, again, the pandemic has helped move along quite a bit. I think in recent years, too, we’ve seen a lot of this stigma around mental health and seeking help disappear. So more people seem to be reaching out and signing up for these services. So to me, I’m expecting that this market is going to keep growing. And I also think that more companies are going to start offering access to mental health, be it in-person or probably more so through these apps and online services as a benefit for their employees. But I do think you need to be careful, just as a caveat, before you download any of these apps in particular and make sure you’re reading reviews, making sure they’ve been vetted by actual mental health professionals. Are there studies around them to see if they’re legit? Because anytime you do see a market that’s kind of booming like this, not every single one is going to be top quality.
Rachel Star Withers: Oh, yes. Agreed.
Alison DeNisco Rayome: Mm-hmm.
Rachel Star Withers: Can you highlight some tech that you’ve seen come out that focuses on mental health, whether it’s apps, websites, games, wearables?
Alison DeNisco Rayome: Sure, it’s definitely a very broad range of tech focusing on mental health out there right now, depending on your specific needs. We’ve seen the apps, like the Calm app for meditation and sleep or Talkspace for tele-therapy. But we’ve also seen some companies doing interesting things with virtual reality. One has done some stuff to reduce loneliness and social isolation in older adults in particular. We’ve also seen that in some clinical settings, VR can be used to treat PTSD and certain anxiety disorders. And then in terms of video games, I know in 2020, the FDA actually approved the first video game based therapy, which can help improve attention function in kids with ADHD.
Rachel Star Withers: Oh, wow.
Alison DeNisco Rayome: And so I think it’s fair to say that we’re going to see a lot more interesting growth in all of these areas, really taking advantage of that technology for mental health.
Rachel Star Withers: Have you seen much in the way, as far as you know, we have the Apple Watch, we have so many of like the Fitbit evolutions and stuff where it like tracks.
Alison DeNisco Rayome: Mm-hmm.
Rachel Star Withers: Have you seen that as far as mental health? I know it’s kind of been in a lot of the trial stages of being able to send that info to a doctor. Have you seen anything on your end working for CNET?
Alison DeNisco Rayome: Right, I think it is something that a lot of these companies are working on, building into those wearables like the Apple Watch and the Fitbit and everything. Definitely building in more ways to track mental health things, I think, so that you can go report them to your doctor. And as you mentioned, a lot of them are trialing these ways to hopefully do it, you know, in a HIPPA safe environment, to be able to share information from your watch with your doctor so they can have that real time to give them just more context around what you’re going through. Moment to moment.
Rachel Star Withers: Question on that, are tech companies worried about lawsuits or any legal actions in the mental health care space?
Alison DeNisco Rayome: I think tech companies that work in mental health are very conscious of making sure that they’re following legal guidelines and health requirements. There are so many obviously privacy issues that could come into play there, which is why I think it’s partially very important to kind of vet before you download any app or use any service, really look into their terms and in privacy agreements to make sure you know what they’re doing with your information.
Rachel Star Withers: I just like a casual consumer also having schizophrenia, tha t’s a lot to ask
Alison DeNisco Rayome: Right.
Rachel Star Withers: Of a person, you know, just being honest with you. So, for instance, if I were to download the app through the Apple store or I guess what I’m asking, is there any like protocol already set in place for knowing if an app is legit or not?
Alison DeNisco Rayome: Yes, I think generally when you’re looking at apps, whether you’re using Apple or Android or any other platform, you want to take a quick look at the apps privacy policy or terms of service just to see how long and complicated it is. If it’s very long and complicated, that might be a sign that there’s a lot of stuff in there that might not be great for you. So maybe it might be something to be avoided. And I know some tech companies are working to make it harder for apps to track you and use that information for advertising purposes. For example, Apple with iOS 14.5 has just released this new feature where when you’re using an app, it might pop up asking your permission for that app to track you across the Internet, and you can now opt out of that. So if you know you’re looking up a pair of shoes on Instagram, it’s not going to follow you across every other app that you ever open. So that’s a really good sign. And hopefully things like that will also help in the mental health space to keep your information more private.
Rachel Star Withers: Can you share with us some of the stories from Tech for a Better World that you’ve covered with CNET?
Alison DeNisco Rayome: Sure. Yes, so during the pandemic, one of our writers did a story about how Reddit can actually tell us how COVID is affecting mental health and how researchers from MIT and Harvard are using the site to look for ties between mental health and people’s language, which could eventually improve care. That was pretty interesting. We’ve also done some stories on sleep hygiene and how to fall asleep when you’re feeling anxious, about how tech accessibility has been lagging, but how things are changing. So some of the same things we’ve been talking about today.
Rachel Star Withers: That’s really interesting about the Reddit.
Alison DeNisco Rayome: Sure.
Rachel Star Withers: Just asking, obviously, I think all of us will go and check out the article about it, but did the researchers, were they like going on to read it and just like kind of scrolling through different postings or did the researchers like they posted and like actively got people to respond?
Alison DeNisco Rayome: Yes, so what they did was actually use machine learning to analyze text for more than 800,000 Reddit posts coming from 15 different subreddits that were devoted to topics like health, anxiety, bipolar disorder, schizophrenia, depression spanning from the early pandemic days. And also some non-mental health ones, too, like parenting, personal finance. And they were able to find it like anxiety surrounding health was increasing across those areas. And also reasons for concern among specific mental health groups whose situation might be complicated by the pandemic and the hardships that happened there. So it was really able to show which populations are feeling most vulnerable in this space where people might feel pretty open, opening up.
Rachel Star Withers: Is there any other like emerging tech you want to tell us about, Alison?
Alison DeNisco Rayome: Yeah, there really is just so much innovation happening in so many fields, especially medicine. Obviously we’ve seen the rollout of the vaccines, but they’re also doing a lot of interesting new things with using artificial intelligence to try and identify new types of treatments that humans may not have identified before by looking at all these masses of data. That’s something that’s really cool and has a lot of promise for the future. And along with all the other things that we’re always hearing about to some degree, like robotics and drones and everything that, you know, seems very futuristic, but I think we’re getting a lot closer to seeing move into our everyday lives.
Rachel Star Withers: Well, very cool. Alison, it was so great talking with you today. How can our listeners learn more about you?
Alison DeNisco Rayome: Sure, so people can find my work on CNET.com, or you can also follow me on Twitter @AlisonDeNisco.
Rachel Star Withers: And we will all be checking out that series, Tech for a Better World. Thank you so much, Alison.
Alison DeNisco Rayome: Thank you.
Gabe Howard: As always, excellent interview. What were your initial thoughts?
Rachel Star Withers: Right away. What struck me was when she pointed out that so many of our tech improvements for people with disabilities, unfortunately, are responsive. They’re not like made with a person with a disability in mind. Like it’s kind of like, hey, let’s make this great thing. We do. And then, oh, hey, how can we adjust it so other people can use it? As opposed to starting off as being, hey, how can we make this really cool product we’re coming out with so everyone can use it? Things aren’t being made with accessibility already in mind. That kind of struck me because I’ve been like so excited. I love when there’s a new iPhone update, because that’s the first thing I go is I go into the accessibility and I have so many like things clicked on my iPhone and I love it. So I’m like, oh, yeah, they finally figured out how to make such and such easier. And then when she said that, it made me kind of salty about it. So I was like, wait a minute, she’s right. I shouldn’t be so excited that now they’re thinking about me like, wait a minute, this shouldn’t be an exciting update?
Rachel Star Withers: For so many years here, we’ve had the ability to do these telehealth and all this stuff. It wasn’t widely used until the pandemic and suddenly normal people had to have it. Suddenly, all these doctors are like, hey, we’ll figure out how to do telehealth. And you look back at all the people who’ve been homebound over the years who telehealth probably would have been very helpful. I think back to taking care of my grandparents who had severe Alzheimer’s, like getting them to the doctor was an all day affair. I think about other people with schizophrenia who are in rural areas like myself. There is no bus system where I live. I don’t have a bus system. There is no public transportation. If it wasn’t for driving myself or having my parents, I would have no way to get to the doctor. Telehealth really should have been available so many years ago for all these other applications, and it wasn’t.
Gabe Howard: I agree, Rachel, it was startling to hear that telehealth has been available to people for years, but there was all this resistance to it until able-bodied people were impacted and then suddenly it’s OK, it’s safe. We can do it. When the disability community needed it, it was, oh, there’s all these problems. I don’t know. It’s better if they come in. But as soon as the able bodied community needed it, suddenly it was safe. And we’re really talking about it is, oh, this is great. It’s a miracle. The disability community has been aware of telehealth for many, many years. I would argue well over a decade. It was another form of stigma that I hadn’t thought of and that she pointed out. And it’s an important moment. It’s an important moment where all of us, as people who are advocates for people with schizophrenia and other mental illnesses, we really need to make sure that we’re pointing this out.
Rachel Star Withers: I see it in the same way with there are so many apps for just general mental health care. There’s all these counseling apps now that you can download. And I’m not saying that they’re not qualified to deal with schizophrenia, but I have tried multiple counseling apps. And once you type in anything with hallucinations on them, you kind of get a little warning that pops up because, yeah, they’re made for the general population and a little bit of depression. They’re not made for serious mental disorders. They’re not made for dealing with, I would say my normal life, which is jarring because it does make me realize that I’m not normal. You know, I download a mental health app excited, like, yes, this is going to help me and realize right away that it’s not going to help me. This is like suggesting I take a breather and write down what I’m grateful for. And I’m like, OK, those are wonderful techniques, wonderful basic techniques. However, I am having a hallucination right now of a giant dark figure, that won’t leave me alone all day. I’m terrified out of my mind. I can’t think straight. These aren’t exactly the write down three things I’m grateful for is not helping me. I feel we’ve had these major leaps for mental health, but not for schizophrenia. Throughout this episode, I’m sure some people might have noticed I actually have used the term serious mental illness, serious mental disorder multiple times, because, yeah, I want to stress that our normal life involves something very serious. It’s not normal like everyone else’s. And we do need tech. We do need something. And we need people who see us as, you know, humans who want to make their lives better, who want to take an active part in their treatment.
Gabe Howard: And, of course, we want to take advantage of every advantage. We don’t want to be left out of anything. If tech can make anybody’s life better, it could possibly make people living with schizophrenia’s life better. Why would we want to sit on the sidelines and let that pass us by?
Rachel Star Withers: I mean, tech is evolving so quickly these days. It’s hard to imagine what’s going to be possible in like five years from now. Everything is just speeding up so quickly. We’ve hit on some kind of frustrating issues around tech not being fully utilized for schizophrenia treatment. But I do want to close the show on this story that I found to be so cool, because it is about another person with schizophrenia. So Spencer Roux, he has been diagnosed with schizophrenia. And in 2016, he was doing really well. He was working his full time job. And in the fall of that year, he began to notice an increase in his audio hallucinations that made it harder for him to manage his schizophrenia. So his psychiatrist recommended that he change his antipsychotic medication, which sounds pretty normal. And he agreed, however, he wanted to be able to see what the effects of his new medication was, the different dosages on his hallucinations. Now, in order to figure this out, how it would affect each other, he needed to track his symptoms. I like this whole story because Spencer clearly shows that people with schizophrenia aren’t dumb. And I think so many people like assume that, hey, if you have schizophrenia, you’re obviously not trying to manage it.
Rachel Star Withers: It’s the opposite here. Spencer is very proactive and he’s like, I’m going to figure out what’s best for me and work with my psychiatrist. So he sought to answer would higher doses of the medication directly correspond to a decrease in his auditory hallucinations? Now, the problem was that all the apps that he found, it was too slow. He’d have to like enter in the passcode into his phone and then try and open up the app. It was taking too long. So he decided to use a ticker. He found a smart ticker. What would happen was he would, and I didn’t even know this existed, Gabe, a smart ticker, but whenever he was having a hallucination, he would click this little tally counter and it would automatically go to a Web site and it would keep track of how many times a day he clicked this little tally counter. Now, the really cool thing about this is that it actually wrote down the exact time of day. So not only was he able to corresponded with was upping certain medications, affecting his hallucinations, but what times of the day that he hallucinated most, what times were most severe?
Rachel Star Withers: And that was just a side thing that he suddenly had all of this great info and together with his psychiatrist, was able to use this data to pretty much redo his treatment plan. He was very open about it and has also worked with some other ways for people with schizophrenia to track their symptoms, finding out what is and isn’t helping. And I was just blown away because here is someone with schizophrenia who’s like, hey, let’s figure this out together, guys. Let’s figure out what is and isn’t working. And it’s just really cool. It’s definitely someone I suggest you kind of read some of the articles on because it was all very simple, basic concepts, the stuff we’ve been talking about here on this show. He looked out there, he couldn’t find an app that was going to help him. No one else was stepping up. And he said, all right, I have schizophrenia. I’ll figure this out myself. That is what I want to leave everyone with is that all this emergent technology, it’s amazing and it’s great.
Rachel Star Withers: We also can’t just sit around and wait for it to come and find us. I do feel that people with schizophrenia, we’re going to have to take the charge and figure out, hey, this is what I need or this is what needs to be done to help me make my life better, to help me be able to take on life in a new way and manage my schizophrenia. So thank you so much to Spencer out there for really leading the charge on this. We have all these great tech advances. Let’s figure out how we can use them to manage our schizophrenia better and have an amazing life. Thank you so much for listening to this episode of Inside Schizophrenia. Please, like, share, subscribe and rate our podcast. And we will see you next time here on Inside Schizophrenia, a Healthline Media podcast.
Announcer: You’ve been listening to Inside Schizophrenia, a podcast from Psych Central and Healthline Media. Previous episodes can be found at PsychCentral.com/IS or on your favorite podcast player. Your host, Rachel Star Withers, can be found online at RachelStarLive.com. Co-host Gabe Howard can be found online at gabehoward.com. Thank you and we’ll see you next time.cts of life with this condition. Welcome to the show!