MD. Presented by HotDoc.

Michael:

For someone who doesn’t know of you or know your background, maybe just describe a little bit about your background and yourself. 

Dr Insel:

Oh yeah. So my name is Tom Insel. And I trained originally as a psychiatrist, but I spent most of my career doing basic neuroscience, trying to understand fundamental issues about how the brain works. Nearly 20 years ago, 2002, I was asked to take on the job as directing the national institute of mental health. Which is the largest funder of mental health research anywhere in the world. It’s a US agency in the Department of Health and Human Services. It’s part of the US national institutes of health and I did that for 13 years. Essentially trying to guide the academic and to some extent even the private sector research to get a little further along in the path to having better diagnostics, better treatments for mental illnesses. Especially serious mental illness because it was bringing up bi-polar disorder, severe depression, a focus on suicide, a focus on youth. A whole series of issues that we took on. But I must say, I think for all of the money – which was significant, probably about a billion dollars during that period and for all of the energy and time and brilliant people working on these problems. I can’t say that we really made that much progress on the ground. And so, in 2015 I left, moved to Verily. Which was a new company, just launching from Google. It was a health company, health tech. And I thought there was that maybe with technology, in the same way that we had disrupted so many other industries, we could disrupt mental health care. And we started that process but I still was frustrated. And in 2017 left to launch my own effort, called Mind Strong with two other co-founders. Really focused mostly on using digital tools for better measurement. What at the time was called measurement based care. Trying to come up with objective ways of knowing when someone was getting to relapse, or knowing when they were beginning to recover. And trying to get just much better data with which to understand the whole trajectory of having a mental illness. About a year ago, just beginning of 2019 I took a step away from that to get back into the public sector. Spent a year as what’s called the mental health Tsar, although we haven’t had one before. But essentially a senior advisor for the new administration in California, run by Governor Gavin Newsome to look at behavioural health and to try to figure out can we do better in the way we deliver mental health care? And I’ve spent much of the last year trying to come up with a better plan. Essentially a kind of blueprint or strategic plan for how to make sure we get better outcomes for the 40 million people in California. And about oh, we think about 10-15% are dealing with mental illnesses, perhaps 5-7% with severe mental illness. So this is a big challenge and we haven’t made much progress there, but we’ve now got a plan in place to really push that along. Which takes us just about up to the present.

Michael:

Yip, yeah, yeah, fantastic. And maybe going back a bit to the time, like you said it was about 12 years that you were the director of the national institute of mental health. And obviously there was a lot of work there done. But you do say it was almost a frustrating period because you could see these trends going in the opposite way to the way you wanted them to go. Can you maybe describe a little bit about some of the trends that you witnessed and the difference between the mental health trends versus the other trends of health?

Dr Insel:

Well so I would say the last two, maybe three decades have been pretty spectacular for many areas of medicine. Particularly in infectious disease. I was involved a bit in a previous career working on HIV and it was just extraordinary. To be at the forefront of that epidemic. And then to watch over a period of about a decade as we got not only good diagnostics, but real treatments. And to see that epidemic really shift from what had been a death sentence, to now chronic illness and now to an illness that people really can recover from. That’s pretty extraordinary to think that you could do that in the course of about 10-20 years. I must say that, that’s a story we can tell I think for a number of illnesses. We don’t tend to talk about it so much, but childhood leukemia, acute lymphoblastic leukemia, we, we’ve moved that from  being 90% fatal when I was a medical student, to 90% curable today. That’s not the only one. I mean, even if you take a common illness like chronic heart disease. Where for many years, people were dying in their 40’s and 50’s and we’ve reduced overall mortality from heart disease by close to 50% and, in the developed world. So these are extraordinary achievements, brought about by great science and changes in practice, and sometimes public health interventions. Mental health doesn’t look like that. We actually, if anything, have gone backwards over the last three or four decades. No question that we have more treatments than ever before, we have more people in treatment more than ever before. There are you know, certainly more medications, more psychotherapies and we’re spending more money than ever before. But the reality is that the outcomes have not matched the, that promising picture. So, unlike in the other areas of medicine, we’ve actually seen an increase in mortality from suicide. It’s a bit better in Australia, but in the US the numbers have just come out recently from the CDC in the US. There was a 33% increase in suicide mortalities since the turn of the century. That’s rather extraordinary when all the numbers are going basically in the other direction for most other medical problems. But the same with disability. We have now a greater number of people incarcerated, a greater number of people homeless. Just a greater number of people who are failing to recover and who are disabled than we’ve seen at any time in the past. So this is, it’s not a, it’s not a pretty picture. And I think it does cry out for a different approach. 

Michael:

Yeah and, and I know that in your, your Ted Talk ‘Towards a New Understanding of Mental Illness’, you talk about, and maybe the figures have changed, but that about 90% of suicides are connected to mental health issues. Is, is?

Dr Insel:

Yeah, it’s hard, it’s sometimes hard to know because several, many, many people kill themselves without ever, ever having seen a clinician. Either a medical professional or mental health professional, and so it’s, it’s difficult to know what was going on there. But our best sense of this is that in most cases, at least in I would say in Australia, the US, Western Europe. The suicides are related to having a mental illness, whether it’s 90% or 80% is debateable. It’s been a little hard to come up with perfect data sets for this. I should say that in other parts of the world that may be less true. That in Japan for instance, there are suicides connected to, basically as an act of honour. And we see it in other cultures. But at least in much of the, the English speaking world I would say that it’s generally connected to mental illness. 

Michael:

Yip and in terms of, I use this term and maybe it’s a term that’s used a lot, but the human connectome. And I know in the Ted Talk, it’s kind of a, you show an image and it has depression and OCD, and PTSD and the different parts of the brain that are kind of being activated or, or changed during these periods. How does these kind of like differ to other conditions, like Huntington’s or Parkinson’s or Alzheimer’s?

Dr Insel:

Yeah it’s an interesting problem to try to figure out if these are all brain disorders, and we think they are. Why are some of the psychiatric and some of them neurologic? You know, and there’s not a perfect line in between the two. But generally Alzheimer’s, Huntington’s, Parkinson’s would be considered neurologic. In all of those cases you’re dealing with dead tissue, you’re dealing with cells that have died off. That could be true in the psychiatric disorders but we haven’t been able to show that. And our, maybe the best analogy is the difference between having a heart attack, where you’ve actually lost a bit of heart muscle, that’s probably not going to come back. Or having an arrythmia where the problem isn’t that you’ve lost, you’ve got dead tissue or lost cells. It’s the way the cells communicate that is changing. It’s a connectional problem. And that’s the way we think about psychiatric disorders. That the mental illnesses are connectional, they’re not places where you’ve lost a lot of brain tissue. But the parts of the brain aren’t talking to each other in the way that they could or should. That, it’s not that easy to demonstrate that. We have some data that suggests that. And on, but that’s kind of group data. There’s still no individually actionable test that say oh my goodness, look at the way this conduction or this connection is in the prefrontal cortex. This person must have x problem. We do that very nicely now in the heart and so we have very good descriptions of the arrythmia’s and the conduction defects in the heart. And we can connect those two, we know that when there’s a conduction defect in the heart. There’s a very clear sign that you can pick up on the EKG and that allows you to make some very, fairly consistent clinical diagnosis and clinical treatment. It’s not quite that way on the mental illness side. We, in groups of people we can show differences in the way brains, brain areas are connecting. But it’s not yet individually clinically actionable. 

Michael:

Yeah and it seems because obviously it’s very different to have schizophrenia, to have depression, or very different to have PTSD. Are all the psychiatric disorders going up or is it, is it just on a whole they’re going up? And if so, which ones are more on the increase?

Dr Insel:

So Michael, this is a super interesting question. Because I think there’s a general sense in Australia, in Western Europe, in the US and in Canada, that we’re in the midst of a mental health crisis. There’s not just concerns about suicide, but disability. Greater awareness. And people are recognising that this isn’t going well, that we’ve got a real problem, a social problem on our hands. It’s important to realise that that crisis is probably not driven by huge increases in incidences or prevalence. It’s quite different than the Aids crisis, which was the emergence of a new disease that spread through the population and started killing off people for a reason that had never been there before, as far as we know. This one, it looks like the problems that we’re dealing with – depression, anxiety, PTSD, schizophrenia, bi-polar disorder. With a few exceptions, the prevalence of those illnesses hasn’t really changed. So the crisis isn’t brought about by an emergence of these diseases or an increase in these diseases. It’s brought about by a failure of care. Which is, in some ways, awful news. And in other ways it’s sort of good news. Because that’s something we can fix. We don’t really need necessarily to come up with a, a new biomarker or some new understanding if we know how to provide the right care and we’re just not doing it. So I think for us, this crisis calls out for a change in how we care for people with mental illness. Not necessarily a change in how we study it. 

Michael:

Yeah it would seem to me that although there is a lot of improvement that we could make in how we care for, for people with, with psychiatric disorders. That is must be an improvement from what we’ve done in the past though, or is that not correct?

Dr Insel:

Actually I can speak mostly for the United States. It’s just the opposite. You know, we, when I got into this field, which was sometimes I like to say in the late Pleistocene. But it wasn’t really that long ago, it was in the 1970’s. It was, we were in the United States, we were in the middle of what was called the community mental health movement. And I worked at a community mental health centre and we didn’t have, you know, 30 different anti-depressants and 20 different anti-psychotic drugs. We had a handful of both, maybe not even a full handful. We had, we didn’t have the range of psychotherapies that are available today. But we had some things that worked. But we gave much better care, you know. We worked with families, we had a continuity of care where we were accountable to patients long term. And we focused on, on recovery. We focused on getting people back to school, back to work, making sure that they had a safe place to live. We didn’t incarcerate people with mental illness, we didn’t allow them to become homeless. I would say actually the care 40, 45 years ago was actually far better than it is today in most of the United States. Where there has been a complete breakdown in the ability to keep people from becoming disabled. Now we can fix that, and we must. But it’s important for us to realise that we actually used to do a lot better. So the answers aren’t necessarily coming up with something that’s completely innovative. The answers are, are being able to return to a world in which we make a commitment to ensure that people recover. It’s not that complicated. And, and the tools we need aren’t that complicated. There’s no magic bullet, there’s no magic drug, there’s not perfect psychiatric intervention. But it’s a combination of supports, and a long term commitment. It’s actually not that different to if somebody got hit by a truck and they had several broken bones, and they ended up having acute hospitalisation. You wouldn’t send them out from the hospital and say good luck. Or maybe give them a referral to outpatient care. They’d go into rehabilitation, long term. They’d get their strength back. You’d make sure that they were getting all the support they needed to return to work or to return to school. And we used to do that and we need to do that again for people with mental illness.

Michael:

And what would you say is the biggest difference, and obviously you mentioned that there’s a dependency on new drugs. Sorry, you actually, you didn’t say dependency but you said that there are a lot more new drugs. There’s obviously the pharmaceutical side of things which maybe you want to speak a little bit on. But are there other factors as well that have kind of changed the way that we deliver care?

Dr Insel:

Well there, there are. At least, again I can give you mostly the American experience. And it’s, the care is really a business. It’s driven by the financing. So people get the kind of care that gets paid for. It’s simply, it’s simply that it’s a business transaction. And what gets paid for are, are medications and, and hospitalisation and emergency room visits. A lot of other things that we know are really important, like we have here what are called ACT teams. Assertive Community Treatment teams. That go out to people’s homes, meet with families, ensure that people are, have a safe place to live. And are getting the kind of, you know, reintegration into the community. Those things are really important but they don’t get paid for. And so they’re only about 2% of people who have an acute psychotic illness get access to that kind of care. Which is probably as important as just about anything else you can do. So a large part of this comes down to the simple, crass aspects of what’s getting paid for. What that does lead to though is the fact that we are using a lot of medication. One in six Americans are receiving some kind of psychiatric medication. That’s pretty amazing. And the number of prescriptions are phenomenal. I mean it’s well over double what it was just two decades ago. So we’ve got this huge increase in the use of medications. I actually think that is a good thing. I think that people need medicine for an acute psychotic illness in the same way they would need medicine if they were hit by a truck. You want that. I just don’t think that is the sum total of treatment. That is a sort of necessary, but not sufficient response to having a severe psychiatric illness. And what is egregious here is what, that unfortunately much of the time that is what people get. Is they get a prescription for one of the many, many medications that are out there. If they don’t get better then they get a prescription for another one and sometimes another one. And there’s a sort of belief that you can approach a mental illness the same way we approach an infectious disease. That it’s caused by some simple agent like a so-called chemical imbalance. And that giving another agent, like an antibiotic for an infectious disease will make it go away. And I have seen that happen. But it’s rare. Most of the time people require much more than a pill if they want to recover in the sense that they go back to school, get back into work, begin to take care of their families and really re-enter society. It’s not enough usually to simply take a pill for that, in the way that it might be for most infectious diseases. 

Michael:

Yip and I know that you mentioned in one of your talks as well, that, that as well as you know, the way that we treat the conditions as they, you know, crop up. That we also have this problem where we wait for the behaviour, or the brain behaviour systems to show up before we you know, jump in and try and do something about it. And you used the analogy of heart disease and heart attacks, and you know, 1.1 million Americans are dying each year from heart attacks. Which could be preventable if we kind of like look earlier in the piece of what’s going to lead to this. And in terms of mental illness, where can we, obviously like you said we’re not doing enough. But where can we look for these markers before they kind of show up, or can we at all?

Dr Insel:

Well I don’t think we’re very good at that. I mean there is a lot of research going on in this area to try to do for mental illness what we do for heart disease. So having the equivalent of you know, a cholesterol test or a test that can pick up a change in function in the brain early enough to say, oh this is a person who is at very high risk for depression, schizophrenia, by-polar illness. I must say though you know, I think if you think back, if you do a step back from this and think about. Again remembering that this isn’t like an infectious disease and maybe it’s not entirely like heart disease. Where we, we know who is on this path much of the time, pretty early. Again, not for everybody. But we know kids in the child welfare system are at a much, much higher risk for developing a range of behavioural health issues. Whether it’s drug addiction, depression, PTSD or in some cases psychotic disorder. They are, and, and there’s some debate about how big that risk is. But it’s in that five to 15 fold higher risk, it’s massively higher. Which means that it’s in the same sort of category of any of the predictive bio-markers we would have in medicine. The same thing for looking at adverse child experiences. We know that kids that adverse child experiences to a certain level, are at least two to three fold higher rate of getting depression in their late teens or early 20’s. And so while we don’t have the perfect blood bio-marker, it’s not that hard. I think we, we know people who are at risk and yet we don’t do much about that. We wait for them not only to develop symptoms, but honestly to develop a disability before they will usually come forward to get care. And it’s a complicated question. I mean, not everybody wants to get care. Sometimes when people are depressed they don’t think they deserve to feel any better. They don’t deserve to feel, to get, to get care. But we ought to at least educate people about where the high areas of risk are and make sure that they have access to something that could be helpful. 

Michael:

Yeah, and that obviously going and seeing someone is a helpful, like a psychiatrist or psychologist. Is there, when you say access to other forms of help, what does that look like?

Dr Insel:

Yeah, it could, there’s a whole bunch of things. I mean, in, here we are in 2020 and we’ve got lots of tools that are available online. There are communities online. They’re not all great but we’re hoping to build out much better ones where people can get not only information, but can get support from others who have been through a similar experience. And they can get educated about what, what works, what doesn’t, what they’re facing. But it’s even, you know I think, when I look at where the opportunities are now in this whole area of prevention or moving upstream. All of us would love to say you know, we want to make sure no one ever has a psychotic illness. And I think that would be an extraordinary world to, to work for. But to be realistic and to think about what’s really feasible, we could do a lot better if we just said anybody that has a psychotic episode should never have a second psychotic episode. That, there you know someone is at very high risk. Like yeah, 90% risk of having a second episode within two to three years. Why do we let that happen? We know how to prevent that, we know how to keep people from developing disability when they have an illness like schizophrenia. And yet we, we don’t do what we need to do. We wait until they’re in the sort of stage four, with, with chronic symptoms, chronic disability. And a very difficult life situation. And, and that’s when we begin to intervene with emergency room care, crisis driven hospitalisation, all of that stuff. That’s the most expensive, least efficient and actually least effective way to do this. We ought to be able to make a commitment, just as we did 45 years ago. So that when somebody has a first episode, they never have a second one. 

Michael:

And I’m very interested, and obviously I don’t have a medical background myself. But when you talk about schizophrenia and how we can prevent that second episode from happening, what does that look like to prevent that from happening?

Dr Insel:

Well this goes back to projects we did when I was at NIMH. We had this project called RAISE, it stand, we always had some acronym for everyone of these massive research projects. Recovery After Initial Schizophrenic Episode. RAISE. And it was a project that we launched in about oh, I think 2012 maybe. Something like that. Maybe 2010. It was in that, early in that decade. And we had, it was at 34 sites across the country. These were community sites. Looking at just that question, like what would be optimal care for a young person who had just had their first episode of psychosis? And what we ended up with was honestly, it wasn’t anything that innovative. It was using many of those thing we were using three decades ago that we’ve stopped using. So, making sure that there were home visits with that kind of ACT team that I mentioned. Making sure that people were involving the families. Giving the patient who had had a psychotic episode a real role in planning out their care and getting them engaged in a way that would ensure they had some agency in this whole process – which they usually don’t. So there were about four or five things that, again, no magic bullet. But a network of interventions they could put together. Also included medication, also included cognitive therapy and cognitive rehabilitation. And a whole bunch of things that make it so hard for people after they have been psychotic to, to get back on the horse. You do all of those things together, and the reality is that people do pretty well. This, you know, it’s, it is like getting hit by a truck. It takes time and it takes a lot of work. But the people who stay with it, and most of these young people did, they recover. So that, that project RAISE has now evolved into the much bigger effort across the US, I think there are 296 current sites that provide this kind of first episode psychosis care. That the term of art is Coordinated Speciality Care. Coordinated Speciality Care is now something we’d like to see prevalent across the entire country. And I think it’s a step, although it’s not, we’re not there yet. But it’s a step towards making sure that anyone who has had a first episode, doesn’t have to go on to have a second one. 

Michael:

Yeah, do you think that the western world is seeing this as a, as a bigger problem than perhaps other cultures? I just look at you know, sometimes the community make up of eastern cultures can be a lot stronger. And it seems you know, more of a village raising a child. Whereas there seems to be this emphasis on you know, nuclear families raising, raising children in the western world. Does it, do you see different statistics or is it something that you’ve studied?

Dr Insel:

It’s been studied and I think we were better off when we had nuclear families. The problem is we’re losing the nuclear family here. And so it is really difficult. And you know, when I talk to colleagues in India, they, the first thing they stress is that the families are, are central to, to the whole treatment path. That they are engaged in every step of the way, even when young persons in the hospital the family may be cooking for them or staying with them. That does not happen, at least in the United States. In fact, if the person is over is it 18 I guess? Yeah, over 18, the family is, is even not allowed to get the information about how their family member’s doing because of what’s called HIPPA, the privacy law. That can be, the patient can give consent and then the information can be shared. But, but providers are really reluctant to engage families. And that is so unfortunate, whether it’s in a crisis situation or planning long term care. Whatever it is we’re talking about in trying to get a young person back on their feet. The fact that in so much of the western world we’re not engaging families, it’s putting us at a huge handicap/

Michael:

Yeah, and do you, do you think that we also have a problem just talking about mental health? There’s a lot of stigma around, you know, it’s lifting to a certain degree. But there, there is still a lot of stigma around what, if someone’s been diagnosed with a label and then they feel like that’s a burden on them. Or whether we don’t feel like we can be truthful about how we feel. Is there a problem and whether that’s global or in the western world?

Dr Insel:

Yeah, a lot of people point to that as a sort of, one of the big impediments to making progress. I’m, I’m not so sure. I mean, I think there are, there are negative attitudes. Not just about the illnesses and people that have them. I think the negative attitudes are even greater about the treatments and the people who give them. So I don’t like the word stigma because that’s kind of a, kind of a victim word. Which I don’t think, I don’t think it feeds a cycle of action. So I think it’s probably better to talk about it as discrimination or put it into sort of a civil rights context. Because that’s essentially what we’re talking about here. It’s very difficult to imagine any other serious medical problem, that you would incarcerate people for instead of treating them in the hospital environment. I don’t know of any other one. We used to do something like that for leprosy and for tuberculosis. We’d kind of move people off and separate them. But those, we don’t do that anymore. I think we’ve kind of gotten away from that. And for many, many years we didn’t do that for people with mental illness. We actually created asylums and we created the health environments for them. But again in the United States, we’ve reverted back to the early 19^th century and most people, especially with severe mental illness. They’re much more likely to be incarcerated than to be in a public hospital bed. I think the numbers are like ten to one in the United States. That are ten times more people with serious mental illness in jails than in public hospitals. That, you know, I don’t, I call that discrimination. I think that’s a civil rights problem. 

Michael:

Wow that’s huge, yeah that’s insane. And I know in another one of your talks you spoke about, I think it was told to you by the father of a child who has schizophrenia. And he said, that our house is on fire and all we’re talking about is the chemistry of the paint. As, I’m just very interested because you know, being a director of a national, like having a lot of data. Having a lot of access to what is happening. Are we focusing on the wrong places or is that kind of changing?

Dr Insel:

Well yeah, that’s, I’ve thought a lot about that question Michael and it’s, you know, I do think we need to focus on the chemistry, the paint. I think it’s important that someone, somewhere is taking a long view and saying we have got to get a very deep understanding of what these illnesses are. And we’ve got to come up with much, much better interventions that are well tolerated and are targeted, and give us much better outcomes. I’ll accept that. But having said that, their house is on fire and we are not doing the work we need to do to put out the fire. And that’s the urgent question. The urgent question for me is how do we reverse all this, how do we get, how do we ensure; not that we get much, much better treatments. But that we do a much, much better job of using the treatments that we have today. We have stuff that works. We know how to help people recover. And people do recover when they get the right set of treatments, at the right dose, at the right time. And that happens very, very, very rarely. That’s what I find as unacceptable. And that’s where I think the energy and the focus needs to be right now. It’s, it’s not going to be the chemistry of the paint – at least for me. It’s going to have to be in thinking about what will put out that fire and we actually know how to do that. We now need to start doing it. 

Michael:

Yeah and I’m interested, and I know you mentioned off air before we jumped on the call, that you’ve moved on from Mind Strong. But I’m interested in what, what actually you know, got you started with it? Because it seems like, maybe describe what Mind Strong is and just yeah, what led you to kind of start the company or co-found the company?

Dr Insel:

Well so Mind Strong is one of about, oh maybe almost 800 digital mental health companies that have been launched in the last decade. Mind Strong happens to be one of the largest and I think one of the more successful ones. But that’s, maybe not everybody would agree with that. But the, the space has been filled by people saying can technology help us here? Whether it’s getting better assessments, so we get much more objective measures of how somebody’s thinking, feeling, behaving. Whether it’s by providing greater access to care, so you don’t have to wait three weeks to get started on a cognitive behaviour therapy platform. But you could boot that up on your phone and be off and running, with cognitive behaviour therapy for a phobia or for depression, same day. And you could do it on your own schedule and in a way that works for you. And even whether it’s just using technology to get better analytics and to use AI to understand more about how, how to provide care or how to integrate care. How to measure the effectiveness of care, all of that stuff. So the sort of, for me those are the three big arms of what the digital mental health revolution looks like. Mind Strong’s particular focus has been on the measurement base piece. Could we use information from your phone, not the sensor data – although that could be interesting. Or the text content or speech, all of which could be fascinating. But we look at just the interaction that is how you’re typing. And it’s not what you type, but literally how you type. The number of errors made, the latency between different parts of the keyboard. And that has given us insights that allow us to track changes in mood or cognitive function. It’s a pretty interesting idea because it’s, we spend so much time on our phone. It’s a way of getting assessment done in what we call a passive way. We’re not asking anybody to fill out forms or to take any time, or to do anything other than what they would be doing anyway. But in that course of daily life, ecologically we can pull out passively a rather continuous picture of how somebody’s functioning. And that looks like it maybe useful as a kind of digital smoke alarm to let us know when someone is, with serious mental illness, is beginning to relapse. We’re really focused on people with the most serious mental illnesses who are in and out of hospitals, and trying to figure out how do you detect earlier so that you can intervene earlier. Keep them out of the emergency room, keep them out of the hospital, make sure you’re getting people to recover in their home environment. So that’s one approach. Many, many other companies have done interesting things here from using the power of data science to be able to deconstruct language and to know how in real time to measure sentiment and coherence in language. Others have figured out ways of delivering care where, not just through telehealth but through using bots and being able to sort of scale the way we do care so that there’s 24/7 access. There’s just a huge number of things. I think one of the most interesting opportunities is to actually empower people who are struggling to help each other. And to create communities in the way that we’ve done for years. I mean, almost a century with alcoholics anonymous. In vivo, you know, face-to-face but taking that online and allowing people with similar issues anywhere in the world to reach out and help each other, and guide each other into a recovery process. Super interesting to think about the power of online communities and maybe marrying that to some offline communities. So there’s a lot that can be done here. It’s still early days. I don’t think anyone has quite cracked the whole problem of how to transform care and get much, much better outcomes. But Mind Strong and many other companies are on that path. 

Michael:

And I think it was mentioned that it kind of, it creates almost like a digital phenotype, is that kind of the correct terminology?

Dr Insel:

Yeah the term we use at Mind Strong has been the digital phenotype. The idea that by looking at this passive data, this continuous collection from somebody’s phone, we can get a picture of how they’re, how they’re functioning. Obviously there are massive issues around privacy and you sort of, data security. All of these things that we’ve been very much engaged with. I must say, I think with patients who have been hospitalised or have had the you know, to go back to the house on fire analogy. Who’ve had their house burned down a couple of times. The idea of having a digital smoke alarm is pretty appealing because they really don’t want to go back into the hospital. Tremendous sense of loss of agency and loss of identity when you do that. So, most people want to stay out of the hospital, out of the emergency room. So they’re really hungry for something to help them do that. We still have a lot of work to do to make this optimal, but we’re, so it’s somewhat early days. But already we’re at a point where it does look like we’re able to get the kind of information that gives us a reduction in emergency room visits and hospitalisation. 

Michael:

So at the moment, just to be kind of clear, if someone’s had an episode then they might be put onto the program or, as opposed to someone who has never had an episode before?

Dr Insel:

Yeah so, so in our case because we’re dealing with people who have a diagnosis and who are in the health care system. Often this, they get the app on their phone when they’re getting discharged from the hospital. Or sometimes when they’re in to see their, their psychiatrist. I think it’s a different proposition to say should we be monitoring people who don’t have a diagnosis or who haven’t yet developed mental illness. That’s a question we haven’t begun to answer. We haven’t looked, we haven’t thought about that. Because I think there’s a different set of ethical constraints there, you’re into a, you’re into a different conversation about how much do people want to have their phones interrogated or their phone behaviour interrogated, when they don’t have a recognised problem. And do they want to find out they have a problem if they’re not aware of one. So I’m, I’m not saying something that won’t happen or couldn’t happen, but it’s not what Mind Strong’s been doing. Mind Strong has, have started with people who are already in a pretty severe situation and trying to help them to recover and to make sure that they don’t relapse and get back into that. 

Michael:

And just to, roughly how many people have you know, have gone on the program? Are they kind of finding at the moment, I know it’s obviously all up in the air and you’re kind of working through things. But is there initial preliminary data that kind of?

Dr Insel:

There is. We spent a couple of years and I’m not close to the company right now because I’ve been doing other things the last year. But, so I can’t give you the most up to date numbers but for a couple of years we had a million R&D phase where we were working a lot with academic investigators to try to understand where is this going to be most useful and what do they, what’s the actual phenotype look like and how do you take all these data that come in and make sense of them? In the past year its been much more within a healthcare system. And there with data from many, many hundreds of people and soon to be many thousands. Its been possible to look at is this a successful approach to ensure that people are not rehospitalised or not in the emergency room? I think a lesson from this and it’s really maybe a more fundamental lesson for this whole digital mental health field. Is that the assessment piece, the measurement piece is important but it’s kind of like what we were saying before about the medication. It’s not sufficient. What keeps people out of the emergency room and out of the hospital is care. And so while we call this a digital smoke alarm it’s also, it’s a signal for care managers or for providers to get engaged. And so that is a really important piece of this as, if you want to be successful to improve outcomes – you have to provide care. And that, it’s not enough to just provide data or even to have a smoke alarm, unless you’re prepared to put out the fire. 

Michael
Yip and you mentioned it before, and obviously just now, which is the care aspect. And things like, because obviously there are only so many health practitioners available, compared to when you’ve got a one in five people who are likely to experience an episode or, or maybe episodes not the best word for it. But there are these community groups out there but how do we kind of get people connected to those things? Is it educating the health practitioners about what is out there? Because it just seems there are an awful lot of groups as well. Again, awful is the worst word to use here but there is a lot of groups.

Dr Insel:

Yeah, I mean I was just on Reddit this morning. I think I saw 593,000 people on the depression sub-Reddit. So they’re there, I mean people are finding their ways to these communities. And Pinterest has launched something like this in the US. Veterans are using Rally Point as a really powerful way to connect with each other and to support each other. I think that’s a bit part of the future, is going to be taking the AA model of peer support and helping people, empowering people to help each other and moving that online. I think there’s tremendous promise on that but it’s still early days. And I think you’re right, most people don’t know what’s available. And in these, many of the online communities – whether it’s Reddit or Facebook or Pinterest – it’s not clear that they are monitored in such a way to prevent trolls, to prevent really negative information. It’s like you know, someone said to me recently it’s like handing out unsterilized needles. I mean, it’s not clear that these are necessarily helping. And we don’t measure the effects, so there’s no way of knowing what the impact is. So there’s a need to create the kind of community resource that is moderated, that has a kind of rigour to it. And that measures outcomes so that people can be confident that what they’re doing is helpful and what they’re getting is useful. 

Michael:

Yeah and Reddit’s such a great example because it, when you have a lot of voices. Obviously these voices aren’t necessarily the voices of experts. But you just get a sheer volume, it’s, you can often you know, start trending towards a truth. And even with you know, the diagnosis of disease it seems like there’s these ways that, or doctors are kind of using crowd sourced help to try and get a lot of different doctors to pitch in. But obviously like you said, it’s, it has its own problems and then suddenly it seems like it falls outside of the realm of you know, health care or health practitioners. 

Dr Insel:

Yeah so I think what you’re getting at Michael, I mean there’s this sort of deeper issue here. I’m still learning, but it’s clear that there are problems for which you need expert advice. Or expert guidance. Because they’re complex and maybe even unique. And they’re tough judgement calls. And it’s good to have somebody whose a master clinician and whose done this a lot. But you know, a lot of what drives people into the hospital or drives them into the emergency room, or drives them back to substance abuse isn’t that complicated. It’s often, it’s often loneliness or some profound disappointment. It’s something that just being connected to somebody else can help them through. It’s not something that requires a master clinician. And so if you look at some of these sites and if you follow the world of, even of care management where care managers are getting involved. A lot of what they deal with is loneliness or somebody who has sometimes just a question about is it, if I’ve missed a dose of medication is it okay to take the next one? They’re just a bunch of issues that people come up with everyday and it’s very difficult to get reasonable information or reasonable connection to anybody. So I am impressed that there are, as we think about the menu of solutions we need here. Yes we do need master clinicians. We also need community. And what needs to happen now is to have a kind of menu that includes both of those and everything in between as well. 

Michael:

Yeah, that’s a very fair point because yeah, it’s so much about connection. And I know again, we spoke off air and you said you got some exciting research coming up. So I’d love to have you back on to chat about what that is, because I know that you’re kind of working through the findings at the moment. But what is the question that your most trying to not solve necessarily, but work on? What’s the question that’s most at the front of mind?

Dr Insel:

Well, so for me the question is how do we improve outcomes and how do we get to a point where people do recover? And all of us have tough spots in our lives but how do we make sure that that doesn’t define us? As somebody said to me recently, how do you focus on, not on what’s wrong but on strong and how do you build from that? And I think what we need to do is to come up with a care system, a mental health care system that builds in all the pieces needed for recovery. We had something closer to that 45 years ago. We’ve lost it in most places. I think we can re-discover it and I think we can improve on it. I think technology does help us. It helps us to scale and sometimes helps us to get information quickly. But the answers are likely to be offline as well as online. I think we’ve learned enough by now to know there is no app that will solve this. There needs to be people in the loop. And so for me as I look at what is the future going to be, it will be combining offline care. Brick and mortar, clinic based care that’s integrated with the rest of healthcare. But it’s also integrated with a whole realm of online resources that people can use. Including resources that build community and empower people to help each other. That’s a world that we ought to be able to build and it hasn’t been done yet. But I think maybe 2030 is what we ought to be expecting. 

Michael:

Yip and what, what is just kind of like a final message. Doesn’t matter where it kind of fits into but just in general, whether it’s you know, thinking about psychiatrists or thinking about medical specialists in general. Just a general message that you think is helpful.

Dr Insel:

Well so I should end by saying I’m very hopeful. I mean, as I said. The problem isn’t that we don’t know what to do. It’s we know what to do, we just don’t do it. And that’s actually an easier problem to solve. So I think for medical professionals, mental health providers, identifying the things that work and ensuring that people get them in the right way, at the right time is a very feasible proposition. And we have reason to think that with what we know today, we can get much better outcomes and we’ve got great examples of what that looks like already.