Do Patients Really Want Mental Health Apps?

Jilly Carter:

Hello, and a very warm welcome to this podcast entitled “Do patients really want mental health apps?” In this episode, we'll focus on the patient perspective of mental health apps and any unmet needs these apps can address. To discuss this topic, we have a patient with lived experience of serious mental illness and professionals who are experts in implementation and advocacy within these communities.

My name is Jilly Carter and I've been a reporter on many programs, including those for the BBC, TSW, and WRAL.

Joining me today are Maria Scazzero, MPA. Maria is a passionate advocate for individuals living with mental illness, and she's dedicated to empowering them not just to exist, but to thrive. For over ten years, she's been a fierce advocate for mental health awareness and support.

She's been featured on podcasts and in articles with companies like GoodRx, focusing on raising mental health awareness in the workplace. Currently, she volunteers with Emotions Matter and has previously worked with the Stability Network. Additionally, Maria is a spoken word artist who uses poetry as a tool for activism, shedding light on mental health issues and fostering greater understanding. In her professional life, Maria champions inclusivity in every setting she joins.

John Torous, MD, is a professor at Harvard, and he's known for developing mindLAMP, an app designed to capture many facets of a patient's experience for use in timely interventions and better treatment programs. He's also known for his strategies in scaling and implementing apps for a global reach.

Arun Nagendra is a PhD and she's director of research and scientific affairs with the Schizophrenia and Psychosis Action Alliance, the SPAA, an advocacy organization that aims to create systemic change to improve treatment access and quality for people with schizophrenia and related conditions, as well as their caregivers. So, let's start with a patient perspective on smartphone apps and current use of technology in this population.

Maria, let's start with you. How do people with a serious mental illness, such as bipolar disorder, currently use technology in their life, which might help manage their condition?

Maria Scazzero:

A lot of times people with mental health [issues], with lived experience, they utilize online chats to find support because when I got first diagnosed, I was always looking for answers. They're also using it for mood, to also track how they're feeling. They also use it for like medication reminders, medication alarms, to also track side effects. That's also something else, because I tried ten different types of medication and I had to track which ones I tried, which ones I didn't, so when I would go to the doctor it would be an easy list to go through. But those are some of the fundamental reasons. But I think the big reason that I've used them is for support. Right? Because when getting diagnosed with mental health [issues], I felt so isolated. I felt so alone.

Jilly Carter:

Yeah. And there's a lot of common misconceptions about how this population uses such technology. Was that an obstacle for you?

Maria Scazzero:

I think that people with mental health [issues] are highly resourceful, because we have to be, right? In the sense of, in order for me to be independent and self-sustaining, I have to utilize other supports around me to be able to live that kind of life, right? And so I think for me, the misconception of, you know, technology, that it isn't useful. It is. I had a friend that almost committed suicide and didn't because she had an app that would talk back and forth with her because of feelings. Right? So, like, I think being able to have something that's accessible 24/7 is important. But also a lot of people with mental health [issues] don't have access to apps because they don't have the resources either, to have a phone, to have Wi-Fi. Right? So I think that's also a barrier as well.

Jilly Carter:

We will certainly touch on that. The whole issue of access, because as you've pointed out, it's critically important. So, what you're telling us is that this technology has supported you. It's supported patients who you know, maybe who are your friends. It's almost like having a…a friend in your pocket!

Maria Scazzero:

It is because I think that when you have mental health [issues], you go through a certain darkness and a certain emotional hell that other people may not go through, right? And so, I think in those darkest moments, an app has been helpful because it's comfort, it's connection. The only thing I wanted, growing up with it was like there was like a glass between me and the rest of the world, and an app would help to crack that so I could connect.

Jilly Carter:

And also, it's a very acceptable thing today, isn't it? Everybody uses this technology. Using your phone is just like, you know, almost like breathing! So, all of this is incredibly supportive, and it's happened at the right time.

Maria Scazzero:

Yes.

Jilly Carter:

Great. Now, John and Arun, what about you guys? What insights have you gained from working in the community and what are your insights on how you've observed this technology in action? John, let's start with you.

John Torous:

I think it really is about connection. I think that is the key word. And there's so many ways to use these technologies, these apps to make really powerful connections. It can be connections to other people who have experience of the illness. It can be connections to peer support. It can be connections to clinicians like me, to groups like the Schizophrenia Action Alliance.

And I think when we see technology used to build those beneficial connections, it’s a wonderfully powerful tool, I think, when sometimes the technology is kind of used in isolation, people say, here's an app, you can use it and you don't need to connect to people. You don't need to see a therapist. You use it on its own. I think that's where we get into some more dicey issues.

And some people may not have the best experience. But I think, again, technology is what it is. Our phones are elements. It's metal. We mine them, we put them together. I think it's the emotions that we bring to them, the connections that we bring to them, how, that we use the tools is a fantastic way to bring support to everyone. And I work with a lot of patients across different disorders. I would wholeheartedly say the people with schizophrenia that I work with, they've done amazing things with technology.

We actually did a survey almost a decade ago, so this was before COVID (for those of you listening who remember, the world existed before COVID!). And this is a study, a national one at the NAMI, the National Alliance of Mental Illness in the US, and patients were saying look we're ahead of you guys in the research/clinical community. When I hear auditory hallucinations, I'm using my phone to block out voices. When I'm seeing visions, I'm not sure if they’re hallucinations or not, but I'm taking a photo and sending it to a friend to confirm.

So, people with schizophrenia have been on the cutting edge of using this technology to do amazing things. And I think perhaps, us, as kind of in the medical community, are catching up and we're learning from it, but it really does go back to those connections.

Jilly Carter:

That really is very exciting to hear. But presumably people have to have a certain level of function. In people, for example, with schizophrenia, you've got to have a certain level of function to be able to use them. What do we know in general about this? And what does the literature tell us?

John Torous:

So maybe connection is my favorite word. I think digital literacy and skills is my second favorite word in this. I think what we've seen is increasingly people have access to a smartphone, that they've become a commodity. They're pretty cheap to get. Not everyone has the digital literacy to know how to download apps, pick safe apps to keep your battery going, to not get spam, to not lose your information to hackers and different people.

But what we've seen in our team here in Boston at Beth Israel Deaconess Medical Center, we've done a lot of digital literacy work targeting people with serious mental illness and in essence it’s kind of like the missing instruction manual, right? Sometimes no one sits down and says, “Hey, here's how you use your phone. Here's how you swipe. Because I keep taking away the home button you can touch. Here's how you can go between Wi-Fi and your data plan.” So, with just a little bit of teaching, we have found that anyone can learn this. You can be young, you can be old, you can have a mental illness, you can not have a mental illness. Just that technology is a skill. If you teach people a skill, people will learn it and they will thrive. And what we have found is people who go through just a couple hours of hands-on digital literacy training. They become so excited.

Imagine for those that you listening who use your phone a lot, the joy you had when you first got your phone and how many things you did on it. You can bring that to other people and in essence, right, the phone helps you do so many functional things in the world today. If you want to order food, if you want to get public benefits, if you want to get an airline ticket, there are so many things that you just need the phone for.

So it’s not only that the digital literacy helps you access this world of connections and tools for illness, it helps you function in this modern world, and we can have a whole different discussion. Is that good that we've gone so digital? I’m going to stay neutral on that. But we live in a digital world, and this is a functional skill that we need to thrive and take advantage of what the world offers us.

Jilly Carter:

Arun, presumably the word connection also resonates very strongly with you, too.

Arun Nagendra:Absolutely. That would, that's exactly what I was going to say, too. As the primary way that people with schizophrenia in our organization report using technology. We know that people with schizophrenia are often very lonely and isolated and technology is this, like, beautiful and vital bridge that can allow them to connect with other people who understand their experiences.

And so, for example, at our organization, we have support groups that people will call. It might be via phone or call in via Zoom, but there's such a consistent interest in being able to, like, share your experiences with a few other people who may understand, and to kind of hear their journeys towards recovery, hear stories of hope. In one of the interviews we did with people in our organization, somebody talked about how just having some sort of human connection or encouragement could really make the difference between helping someone get out of bed in the morning or not, or brush their teeth or not. And so, I really think, like, of all the different ways that people use technology, that connection piece, is really critical.

And that's even reflected in some of the work we've done where we ask people, “Do you use apps?” And most people said they do. And the most commonly used apps included, the most common one was messaging apps. So messaging other people, and the third most common one was social media. And so, I completely want to echo what others are saying about that.

Jilly Carter:

But what about self-help apps? Do they work?

Arun Nagendra:People report using a lot of self-help apps, including kind of apps that may help them manage their health or track symptoms or things like that. One thing I've heard from folks is that there's a deep interest, but they often struggle to have kind of sustained engagement or feel like these apps are kind of giving them what they need. And so, I think that can be a challenge. But there's definitely this deep interest and, such a desire to use apps to, to.. for self-help reasons.

Jilly Carter:

This may be a bit of a tangent, but as always, in the area of specialty, there's a lot of jargon. For example: PDT. What you call these apps. Would it be more helpful to use the term FDA-approved app? John?

John Torous

Oh, it…there are so many different words to refer to these apps and these products and these digital devices. Sometimes I just think it's easier to call them smartphone apps or just what they are. And just to say that they're apps, they can help you. And I think, again, it's terrific that some of them, PDT would stand for “Prescription Digital Therapeutic.” Some are just called digital therapeutics. Sometimes the FDA calls them SaMD, Software as a Medical Device… we're getting into alphabet soup. But, I think the point is certainly there's different levels of evidence and rigor that these apps have been studied under.

And like all things, sometimes you want something that’s very evidence-based and rigorous. Sometimes you want something that's convenient, fast, and cheap. There's different needs and different purposes for it. But, I think that it's hard to know what to call them because I feel every six months there's a new name, but they all are software programs that are either running on your computer or your smartphone or your tablet.

Jilly Carter:

Right. So, let's look at how patients might use smartphone apps to help with their treatment. Let's tackle this question by starting with the patient perspective, Maria. And then John and Arun, can you talk about the experience you've both had working in the community? So, Maria, as far as the app and treatment side by side go, what can you tell us?

Maria Scazzero:

So when I was going through dialectical behavioral therapy, I had an app that I used to record my homework, how I was feeling each day and what skills I was using to recover, to cope with what was happening. It was more of like a diary, right? That I would then bring to my therapist session to be able to say, hey, this is where we are. This is where I started, so I could see my patterns and identify when I had triggers so we could set up a “Cope Ahead” plan for that. So that was wonderful.

There also was an app that I use for community to get support from other people. They say we heal in community, and that has been my experience with that. And, you know, apps have been a way for me to really get to know myself and become more self-aware. I've been tracking my mood, my behavior, triggers. And so, it's been very helpful in that sense.

Jilly Carter:

Arun, with the treatment, you've had so much experience within the community. What observations can you make?

Arun Nagendra

Sure. So I think that, smartphone apps are, have the potential to maybe revolutionize how we treat schizophrenia because only about 5% of people with schizophrenia receive best practice treatments for the illness, according to a paper I read a while ago. And there's, as we know, there's this increasing shortage of mental health care providers in the US. So, there really is this massive gap in treatment that needs to be bridged. And I think there is a need for some sort of like paradigm shift.

What we know at this point is that, when we spoke with our community, that is that many people are using health care apps, including apps that can help with focus, meditation, self-care and sleep, can help them manage stress and anxiety and depression, can help them with their meds, symptoms and mood tracking.

They even seek out like online therapy. Affordability is like a major concern for a lot of people, but I think the right combination of digital tools and supports when they're made accessible could really just be such a critical innovation for helping people with self-care, fostering autonomy and, kind of providing really necessary continuity between treatment sessions.

Jilly Carter:

Absolutely, and hopefully in a cost-effective way. John, what do you think?

John Torous:

I think that building on these prior answers, there's three ways that I would use apps with my patients. And like any tool, it's going to be at different times based on where it's necessary. But as we've heard, there's a lot of different interventions, right, that you can do outside the sessions. And the phone can reinforce those skills that you learned in the session.

And as we know, therapy skills work best when you apply them in the real world. And the app can really kind of work in concert with the therapy and just reinforce it and make therapy more effective. So sometimes that's a wonderful use. As we also heard, everyone has a different journey of mental illness. People have different environments, different illnesses, different experiences, and if you can capture that data outside the sessions and bring it into the therapy session, it's not just as a psychiatrist I'm here to say this changes how I get to work with you, but I can better understand each patient's unique lived experience of illness and what they're experiencing. So, it helps the patient better share with me and me better understand what they're seeing. And I think we can really develop more personalized and responsive treatment plans because we're working with more information.

And I think the third case, right, is there's a lot of great online support communities. There's ways that people can find help from other people that doesn't always have to involve a clinician (sometimes it can). But I think if you take this world of interventions you can do outside of sessions, the way that you collect data and bring it into the sessions, and this whole world of other people that want to help out there, that's three really amazing tools. As we kind of said, it's more than a friend in your pocket. Like that's a that's a great resource that's kind of ready to go.

Jilly Carter:

Absolutely, instantly accessible. I noticed that you were nodding quite a bit, Maria, to what John was saying. Do you think patients would be receptive to new apps that support their current treatment, or perhaps give them access to therapies they previously weren't able to receive? I'm actually very shocked at this figure that Arun just quoted. Only 5% get the best treatment out there.

Maria Scazzero:

My answer is yes, because I want to, I would, I don't want to suffer any more than I have to. I want to be able to live a life and not just exist, right? And therapy and these resources... you know, when I first got diagnosed with mental health, it was just about surviving, right? I didn't have dreams, I didn't have visions. But when I started going to therapy, I saw my world was full of possibility. So, if you're, if you're asking me that, would I be open and anyone else? Heck yeah! Because it's going to provide me with a way and a light that there is hope for me, that I can have dreams and possibilities and relationships with people, which is all I ever wanted. Just a longing to connect more than anything else.

Jilly Carter:

Yes. And to fulfill your potential, Maria. And that of other patients. I mean, we've had digitized therapies for about a decade now. So let's consider what types of therapies can easily be digitized that would best support this patient population. Arun, John?

John Torous:

I'll maybe start us off and it's… I think we've seen a lot of digitization of something called CBT, or cognitive behavioral therapy. We've seen a lot of digitization of mindfulness in mindfulness apps. If you search just for CBT and mindfulness apps, you will find thousands of them. We have too many of them.

We've seen different efforts to digitize exposure therapies. It's much easier and safer to induce an exposure of a spider than it is to go find a spider in the world, or a fear of heights. So, I think exposure therapies have had a lot of success in digital ways. But I think what we're seeing in the research world is there's a lot of ways to digitize different therapies that we haven't seen as much of, right?

Like it's very... we know that cognitive remediation is really effective in conditions like schizophrenia, it’s almost impossible to find someone to do cognitive remediation therapy. And I'm in Boston, we have a lot of therapists! I struggle to find those connections for people. We know there's CBT for psychosis, very effective. I can find very few people to refer my patients to that are taking patients offering CBT for psychosis. So even some of these, I'm not going to call them smaller therapies, so maybe just not as well-known? I think we're seeing initial efforts to move them towards digital versions. And it works. People are open to it that they're accessible.

To go back to your question, I think patients are excited to try a new digital treatment. But I think the one thing that they always tell me, they say, “John, you're offering me this new digital treatment. Does this mean I'm you're going to take away my in-person visits? Will I not get as many connections with you few? Is this being used to kind of substitute out?” If this is being used to substitute out, there's justified good resistance. I say no and I say, “Look, this is to augment. This is to extend. This is an extra thing we're going to do.”

So, it gets back to connection. We're not replacing a connection. We're not taking away a human being. We're saying this is an extra tool. And when I explain it that way to my patients, people are thrilled. They go, “This is, this is great. I use apps for so many other things in my life. Finally, you guys in the mental health community have caught up to 2025!”

Jilly Carter:

Yeah, absolutely. You're giving the patient, not just support, but autonomy. Arun, what have you found in your clinical practice?

Arun Nagendra:

So, at S&PAA, we don't necessarily provide clinical services. But what we've learned from just speaking with our community is exactly what the others said that people who want treatment are really, really eager to get it in any kind of way that they can. And there's so much enthusiasm about the potential for technology to get that to them.

And so, you know, people will be going up, people told us, you know, they're looking up on the app store, like schizophrenia apps, or they're asking their health care providers, they are looking on social media for kind of all these different ways that technology could support their mental health. So, there's like this thirst for this, for different types of supports via technology.

And I think there are…we also kind of hear this from caregivers, like caregivers of people with serious mental illnesses, also want whatever support that they can get, both for themselves and for their loved ones. And so I think there is just so much openness, so much potential, and you know that an illness like schizophrenia and related conditions, they have such kind of comprehensive effects and require such comprehensive treatment that I think, you know, to speak to what John was saying, that that to the extent that we can digitize whatever sort of treatment, I think our community would at least be really excited to give it a try.

Jilly Carter:

I'm hearing the words hope, excitement, connection, all very positive things. So, your patients or people in the community, they're not in the least bit concerned about data protection, this is never an issue?

John Torous:

I'll jump in there. So certainly, I think we all know that anything digital is subject to hacking. Health data is very valuable, it's very private, it's very sensitive. I think the apps that we're all talking about recommending are ones that have put in best practices for privacy and security, but I think it's certainly a consideration.

Certainly, the more information an app wants about me, the more careful I am about it, even using it personally. If it's an app that I download and just says “drink water,” it doesn't collect information, I think I have a lower threshold for it. But, I think that as these apps become more powerful and more useful, we're going to see more regulation that guarantees privacy.

In the United States, the Federal Trade Commission - not the FDA - The Federal Trade Commission, actually went after a lot of these mental health apps in the last year for privacy violations, for doing it. And I think that sent a very strong signal when you see million-dollar fines for bad acters. But what's interesting is those kind of privacy violations, it hasn't been that a hacker, really, kind of got into the app. It's that the companies made decisions to use the data in not wonderful ways, to put it mildly. So certainly, any digital data is at risk.

So [are] our bank accounts, different information. And I think that we're seeing across society, not everyone, but people are saying, “Well, if you can prove to me there's a benefit to using this technology, I can build the connections and I know there's some risk of my data, but you've made a really good effort to keep it secure.”

That generally is a trade-off that people are going to say, yes, I'm willing to do it. Notice we're not saying you have to give up your data, you're not using your data or your information as payment. But I do think we want to say there's been good efforts made to protect data.

And we can do that, right? We know how to keep information safe and secure. It's that we have to have that commitment to do it. And sometimes we have to have the law to help enforce it. And as you said earlier, that’s sometimes where more rigorous apps or kind of these prescription ones, they're forced to do that privacy. It's part of what they guarantee. Sometimes it's in the wellness sphere. They claim to do it, but no one's always looking over the shoulder of a wellness app to do it.

Jilly Carter:

I think what's important, when you're developing apps, is to make sure that the user perspective is incorporated into the development and implementation of mental health apps. Would you agree? It seems to be happening because of the enthusiasm and joy that these apps are bringing. Arun?

Arun Nagendra:

I think that the user experience is so critical, but just to quickly loop back around to your previous question about privacy. I mean, I think that it's really important not to try to, not to paint an entire group of people with, like, any sort of broad brush. So, I will say that, you know, absolutely. I've spoken with people who have said to me like, “I don't like using technology. It makes me feel more paranoid.” They don't want to use apps. There are definitely people who have those concerns with schizophrenia. We also see that in the general population, in various ways, of course, like data privacy is going to be a concern for some people, less so with others.

But one thing that I was struck by, at least in our conversations with people who report using technology, was that they're actually pretty open, they were less concerned with privacy than I thought they would be. Like, in one of the studies we did, they talked about how they actually wanted kind of like single sign-on so that for like mental health apps and for their data to be shared across different apps just so they wouldn't have to repeat themselves.

And one person even said, “Well, I'm in the health care system and they're collecting all sorts of information about me anyway, it's all out there anyway!” So, you know, why fuss too much about it being in an app? But I think there is, you know, I think…I think we're going to see some variation, but perhaps, I think I've been surprised by kind of like the openness to using… to kind of like sharing data. And if an app is considered kind of like trusted, like if we, if we say you know, this has been like approved by the FDA, they're, people kind of like, hear that and respond accordingly.

But in terms of, kind of the user experience, we asked our community about that. And they have a lot of thoughts on it. They want kind of very user-friendly designs, very simple navigation. People reported liking like bright colors, kind of, kind of very engaging graphics. And so, they want like easy login methods and interactive interfaces. And they report that they want kind of like opportunities, again, for interaction both with other people who have schizophrenia as well as like therapists.

And so, I think that there are a lot of considerations that if we speak to our community, they can kind of tell us exactly what they might want from apps. They have familiarity to do that.

Jilly Carter:

Has Arun missed anything out, Maria? All those, exciting things that patients want. Is there anything else you'd like to add to that list?

Maria Scazzero:

I think the availability to be able to connect with anyone at any time of the day, right? Because I know with my experience with mental health, my schedule and my sleep patterns would always change because of what I was going through. So having an app where I can reach out to anyone at night, in the morning, was also very important. And just to kind of echo what Arun has also shared about, I'm less concerned with losing my health data and I'm more concerned about getting better and being in recovery.

John Torous:

I wonder if, to put it in context, I have a letter from every health insurance that's ever covered me that they've lost my data by hack. I've never had it happen to a digital one, but I have a whole file of letters of health insurance companies going, “We're so sorry we've lost your information. You can have two months of free credit monitoring.” And it's…so again, I think in some ways we have to realize that there's a lot of sources of loss of information. But I do think the technology that we're talking about can keep it very secure if done the right way.

Jilly Carter:

Maria, as these apps have been around a long time and you've been using them for a long time, have you noticed, significant improvements? Is there room for much more improvement in certain areas?

Maria Scazzero:

Yes, I would say, you know, a lot of my friends that have mental health [issues] have started using apps more because they're more available a lot for mindfulness. I have several friends that have gone through… I've gone through exposure myself, so I've used it, that's also new, right? Like being able to like, upload your homework, getting feedback from your therapist in between sessions.

Right? Not having to wait. Right? I think that has been a big thing, because a lot of times with when I would go to therapy in person, I’d have to wait for the whole next session before being able to ask questions or get, you know, give feedback on something. Hey, I did this, and that's where, for me, that the treatment really is effective because it's in real time. Right? And so, I think in that way, digital apps and therapeutics have increased the ability to have providers be accessible to you so they can be more effective.

John Torous:

Maybe I'll add on. I think also they make a wonderful front door. It's a little bit intimidating at first to kind of say, I have a condition. You maybe want to try it out a little bit, you want to see what it is, you want to prepare for sessions. I think apps give you the way to quickly explore, see different options, learn about it.

We're not saying they would replace care, but again, it's a big step to start treatment for any condition/illness, especially different mental illnesses. And I think apps can kind of be an accessible way to preview, to understand. Again, not at all replace. But it's nice to have a more gentle front door than kind of trying to navigate the really complex mental health system, at least in the US, in getting access to care.

So, I like it as a way to learn about and to begin to onboard to the system. And of course, if you can use these tools as part of care, that's even better. But it's kind of… it can help increase access to care by just opening that door for everyone.

Maria Scazzero:

Navigating the health system in New York City and how complex it is and how many gaps, there are apps has really helped to revolutionize that. In the sense of, I can go to one place, I can reschedule an appointment, I can upload my homework like everything's in one consolidated place, right? Whenever I would have to change providers, I’d have to bring like a binder with me of everything I've been through at treatment and repeat my whole story all over again.

And with these new apps, I'm able to kind of consolidate everything and then bring that. And it's much more effective and much more…it's a better experience. I didn't like going to 5 or 6 different doctors, having to tell my story over and over again. It was exhausting.

Jilly Carter:

Absolutely. But the key word here is surely access. We began with that word we talked about connectivity, but we've also talked about access. And it's getting these apps out to the patients who need them, is it not? And that seems to be a bit of a challenge still, with only 5% getting the best treatment.

So to summarize, let's see if we can answer the question we started with at the beginning of this podcast, and I suspect I know the answer. Do patients want mental health apps to support them on their journey? Maria?

Maria Scazzero:

Yes, because I want to be able to have one.

Jilly Carter:

Sure. Arun?

Arun Nagendra:

Absolutely. I think it really just has the potential for people with serious mental illnesses to share and cultivate their talents, skills, and passions and, you know, their desire to contribute to the world around them and their communities in the way that they, you know, to their fullest possible potential and I think it really could open so many doors.

Jilly Carter:

And finally, John?

John Torous:

I’ll just add, I think we've already seen how far this has come. It's a new field. It's done a lot to revolutionize serious mental illness, and it's only the beginning. So, I think we're going to see a lot of exciting advances this year and onwards.

Jilly Carter:

It is certainly an exciting time and, a wonderfully hopeful time for patients. So, thank you very much to the panel for sharing your views on this important topic. And thank you for listening. Goodbye.

SC-US-78576 | SC-CRP-17326 | March 2025