Ep. 34 – Reality Check – Nev Jones (University of Pittsburgh)

Welcome to Reality Check.

we are excited to be here today with Dr. Nev Jones, who is a colleague of many years and I think more importantly, at the forefront of the work here, not just in the United States, worldwide, to help improve care for young people who are experiencing psychosis.

I'm gonna let Nev speak in her own words about how she likes to identify the work she's doing and what you're doing specifically. so take it away, Nev.

I'm an associate professor at the University of Pittsburgh in the School of Social Work, but a psychologist by training. And I first got involved in the early psychosis space as a patient, as a patient in an early intervention and psychosis program, very early on, at least in terms of US timelines for early intervention. and then after that.

Got into graduate school and always really wanted to do work in early psychosis because of my own experiences. Got involved in kind of various national initiatives around early psychosis very early, and then have just sustained a lot of different work in this space ever since. I have kind of worn many different hats now. after my postdoc, I actually worked as the director of a

evaluation for a California-San Francisco-based agency that was one of the front runners implementing early psychosis programs. And actually in that role, really got to be directly involved in all the day-to-day across all the counties that we had early psychosis programs in, all the kind of performance monitoring, data collection.

quality improvement that kind of goes along with that, but in a very real, like on the ground kind of way. I have been a consultant trainer for peer support within early psychosis models. And then just in terms of my research, one of my RO1s, which started three years ago, I guess.

really focuses on vocational trajectories, work and school, and and for people who end up pursuing disability benefits, disability benefits, and we're following folks over approximately an 18 month period, to really understand how do we really move the dial on work and school outcomes. And then I

Co-lead a project in our local EpiNet Early Psychosis Intervention Network hub focused on improving engagement in the context of real world early psychosis programs. and then do kind of different, different work around lived experience integration and kind of the method, you know, methods and methodology behind that on

anti-psychotic decision making and especially kind of conflicts that that often arise between clients and prescribers around medications. And I you know, also have been involved in various initiatives, international and and domestic, just involving data harmonization. How do we learn from different programs in different

places. kind of a summary of my work in this space.

See, that's

why I couldn't do it myself. You've done so much and

Ha ha ha.

wear so many hats. I wanted you to highlight the things that are most meaningful for you.

So my first response to all of that was

when do you rest? And keeping up the motivation to to be involved in so many different so many different initiatives. I think sometimes for all of us it feels a bit like overwhelming because there's so much work to be done. but kind of what what drives you and and keeping yourself

with so many things happening.

Well, I mean the real problem is that, you know, when you reach the point where the number of things exceeds what is humanly possible and you have to start making more choices because you know,

Mm-hmm. Right.

if it were only a matter of my passion, I

would just yeah

Yeah.

I would just not stop at all that I can't humanly do that. So I have found in these, you know, kind of this more mid career period that it is

It n starts to necessitate saying no to things I really want to do fairly regularly

Yeah.

and having to draw boundaries that in some sense I really don't want to draw. I will say with grants, too, the challenge is you are pretty stuck. Like you have a, you know, when you're in a PI role, you have a very fundamental responsibility to the project, to supervision of staff. So I think that's one thing that's happened is that.

my grants have have radically reduced the sort of the freer kind of wiggle room to just take on things creatively. and it's more limited what I can do kind of beyond the core, the core federal grants that I have.

Yeah.

That's that's hard to say no when we're passionate and feel strongly about the mission that we're on. I want to talk about that passion and coupled with your lived experience, because in addition to all these professional accompl accomplishments, right, that you have made, you have lived experience. And I think, and I've I've I've been verbal about this over the years, you're a real inspiration to many. And I've you know connected

you with many of the peers who have come across our path. But I'd love to for you to share with our listeners and our viewers, you know, how you took those steps, how you, how you found your way forward, and how I think from my perspective, you very effectively used your lived experience to build your career and then work towards, you know, improving treatment for and care for others.

when I was first diagnosed and first entered an an early intervention program, I was actually in a graduate philosophy program. and therefore kind of used to being taken seriously in an academic intellectual sense and and used to at least a sort of a degree of emerging

authoritativeness about scholarly matters in my area. and I remember the first time I sort of set foot right in a psychiatrist's office. I felt very disempowered. and I felt like, wow, this is so different from, you know, in a way it looked exactly like any one of my professors' offices. And yet instead of being in this,

you know, kind of star student role. I was the patient. And then I really had absolutely no background, absolutely no background at the time in like research methods. but I remember I would, you know, try to Google early on and find academic articles, because I certainly write, knew how to find academic articles in a broader sense, and would

occasionally bring them in to my psychiatrist and he would, you know, I don't think in a wholly unkind way, but, you know, suggests that I didn't really know how to read an empirical psychiatry paper or didn't really understand the statistics. and it really was in that moment. it really was in response to

To feeling like, you know, this burning sense that, you know, someday I'm gonna come back into this office and I'm gonna be the one writing the articles, not just told I don't understand how to read them. and that was one thing that kept me going. And some of it was kind of like anger, like kind of I'm gonna, I'm gonna show them, right? not that everybody I interacted with didn't believe in me or anything like that, but I did think there was this sense of like,

you know.

I I'm gonna do something in this space. The other source of inspiration was was really understanding the gaps in perspective and how important and consequential they were or could be. the very first research project I was in as a participant, right? was

so it was obviously attached to the kind of the early psychosis clinic. and it was looking at the impact actually of antipsychotics on cognitive function. but it involved very intensive, like literally like daylong combination of like paper kind of cognitive batteries, and then computerized cognitive batteries as well as some MRIs. and

I remember thinking, like, you know, various things with, you know, kind of naive to research methods, but I was like, I don't think I could be equivalent to the control group because I was literally like just told last night that I have a schizophrenia diagnosis. And like, how can I possibly think clearly? How can I be, you know, various memory tests that are standard in these kinds of batteries, right? And I just I couldn't think, I couldn't focus because I was just very upset and distressed actually because of.

diagnosis and what I've been told and how sudden it all was in a lot of ways. And I was like, they don't seem to understand that. Are they really kind of controlling for that? and then I remember the I did ostensibly really badly on various cognitive tests and the kind research assistant was like, well that can't

be right.

People don't do that badly on them. So like, let's do that over again. And like that happened repeatedly. so this was not an in the moment insight, but I kept thinking, Wow, I'm really I must be really cognitively impaired. And of course it was really upsetting to me because my I my identity was so caught up in, you know, being good at school and academic stuff. And so it's a different side of they they didn't seem to understand

the participant experience of a study like that, that that could lead to this internalization of actually very, very negative and in in my case, genuinely quite damaging what became then sort of a deep-seated belief that I had this just sort of permanently impaired cognitive function.

So I think those early experiences already got me thinking about there needs to be, there needs to be much more representation of the individuals who are experiencing these things, whether it's clinical or research. There's clearly gaps in understanding that need to be bridged, right? Because like the researcher isn't really experiencing what the participant is going through and how they're maybe impacted by it.

so that's kind of where it all started and and has never stopped because I think there's, you know, almost endless variations of this where you just see this gap in perspective and it's sort of a tragic gap often. and also sometimes just I think the level of kind of fear, anxiety, why people don't just say this stuff. They don't just say it to their clinicians or their psychiatrists, the fear, the anxiety, the intimidation.

I think is another thing that I'm very acutely aware of from my own experiences and that I think, you know, fairly s s systemically contributes to these gaps and means that it it it really is an involved thing to try to bridge them. And I see all of my work in some way as attempting to do that, but it's very difficult.

I love that you that you name that. I that moment that inspired this. And I haven't had this conversation for you for that, so that was a learning moment for me. And I and I think a great potential source of inspiration and challenge for many of the people who come into our care who have or care elsewhere, right? Who have that moment of anger, of frustration and experience that gap. I think there is a huge value to leaning into that and doing something.

Something

to change it. And clearly you continue to do that and are actively doing it with numerous research projects where you can infuse your own experience and your vision for change. And that so that's awesome. something I've been wanting to ask you for a long time is right, so you bring you have your own lived experience, you value lived experience, you've worked with peer support, and you have created a place and space for them.

in this work, right? You along with many others.

The value of peer support specialists in coordinated specialty care is is immense, right? They're at the heart of it in many ways, I think. Yet at the same time, there's not always a clear path forward for them. And I find that very, very frustrating. And I'm curious what your perspective is, and in the spirit of problem solving, what are some things that we can do to help elevate peers in this work?

And and to add a little bit of context to that, you know, we had to develop, but there weren't there was not a peer support specialist working at Tulane. So this was a creation of a job description and of all of this, because I guess our perspective was kind of like, of course, but all of the layers of of of this becoming an official.

an official job, like a clin like a clinical service to this team. So so I add that just to of the notion like this isn't something that that everybody does. And you know, we had to get kind of come up against a lot of that just basic education about what this what this service is that they're they're bringing and why it needs to be a formal job.

Yeah. Yeah, absolutely. And I I should say I want to kind of credit my doctoral student Shannon Pagden, who's really leading this project. But we've been working on a qualitative project interviewing peer specialists in coordinated specialty care across the US. And this is easily the issue that comes up the most is both sort of pay, but maybe even more prominently.

the lack of career development opportunities and kind of almost the sense that people will have to become social workers that or, you know, counselors or nurses to to really pursue more of a career trajectory in this space because there's just nowhere to go as a peer specialist. And, you know, to some extent this is true across the entire peer support workforce. And I've also done kind of broader work on the lack of kind of career development.

opportunities and supports. But it's, I think, particularly pronounced in CSC because CSC models, you know, it's one small team and there's usually only room for one peer specialist. And there quite literally is nowhere to go whilst remaining in the CSC space. Very few and far between peer specialist trainer positions for, you know, like statewide networks. So I think that's

it's really an issue now. I have, now that I am in a school of social work, I have encouraged more than a few precisely to just pursue the MSW path. And I do, you know, kind of think a lot about this tension between, you know, the power really that lived experience can bring to any role, versus sort of dedicated, right,

peer support kind of positions and lines. So I'm I and I guess where I would fall is I don't I think people can and and and should be making huge impacts who are bringing that lived experience into counseling, social work, becoming team leaders. There are a few out there that I personally know who have lived experience.

So I think that is tremendously valuable. And at the same time, if you want to stay in peer, there really should we should be doing something to create clear career trajectories for people. supported education and employment specialists, it's not that different though. So it's not this is not just a narrow peer support issue. I think it's

on the education and employment side also a really serious problem. And for both of those very important components of CSC, structurally it also risks kind of sending the message that those are maybe the least valued right roles, even though, you know,

the sort of identity work that happens on the peer support side and the education and employment on the other is so so fundamental to anything that recovery or healing would mean. So I think that's a whole set of tensions that, you know, definitely I think that the field just needs to continue kind of struggling with, right? And and thinking about how this maybe could be done differently.

Yeah, that's we've are thinking thinking and I've had several iterations of this because in our team, luckily we have there is sort of a sharing of responsibilities, like so d and depending on the relationship with the person. so the person might not want to meet two people.

to do p to do school support with school or these things. So like the clinician needs to be ready as part of the recovery treatment plan or whatever to be an advocate for them at school. I mean as a child trained as a child adolescent trained psychiatrist, that was like part of our work, showing up at IEP meetings, going to the you know, going to see the school and doing observations. So

I've I think that for our team sort of understanding that they're not siloed positions and the person might only be meeting with a therapist. And so that therapist needs to sort of help figure out the system with them if they're not wanting to meet someone else right at then then and there, because those things can't wait.

And then on the flip side, you know, thinking more and more about how clinicians are more encouraged to share lived experience and how that might, you know, bring in a dynamic where we're all we're all sharing in these roles that holistically encourage recovery. when it's been historically, you know, that we don't we don't share.

just made me made you made me think of that talking about the like peer versus like supported employment versus someone else and it's really not a versus situation.

Yeah, I yeah, absolutely agree. And also I'd say, I mean, one of the findings from our work in school trajectories grant so far is that actually some of the biggest barriers to kind of developing a career are, you know, these psychological kind of internalized, internalized stigma, low self-confidence.

And s and and almost like kind of challenges even being able to imagine yourself succeeding in the career that you initially, you know, long to do and often how the supported education and employment component is set up, it's like somebody gets referred over if they have a clear employment or education.

Okay.

And then it's very action-oriented, but a lot of people are actually just feeling really maybe hopeless, demoralized, anxious, uncertain, fearful. And that's the reason. And when we ask people, you know, about then the extent to which they engage with those issue issues instead with their therapists, some therapists absolutely naturally do, and sort of

Mm-hmm.

As you're saying, actually, that just becomes an integral central part of that therapist role, but not always.

Right.

Right. So some so I think that is something that is like a real place where I think we can really strengthen what generally happens in CSC programs by supporting that to be more universal especially almost like kind of identifying when it is that.

Fear of the future, lack of belief in oneself

Mm-hmm.

is actually the thing that's getting in the way. And that's why the young person maybe doesn't have an explicit

work or school goal. And I would just add there that this I think is the most likely from what we're seeing to impact youth of color and from higher poverty backgrounds.

So you don't even have like maybe countervailing supports, for instance, when it comes to college of a parent or family member, older family member who went to college, and it's even more important

Hope for something that maybe already almost felt too ambitious even before psychosis is not just kept alive, but really encouraged or uncovered if it's become buried. yeah, a hundred percent. So

I that it was a topic like we we we've done consultation with other team or other people in the state when they like to try to help troubleshoot you know issues and this was the primary thing is that this person we're we're on this session of the supported education and employment manual and we're we're not moving forward and the

But the primary issue is the like laugh of lack of like self-efficacy and it's an emotional issue. Like it's a it's an it's something that absolutely has a place in therapy, which is why we have to be like always talking and like understanding kind of where someone is and when they're ready.

also theoretically and sometimes there there are some programs where we hear peer specialists taking a big role in this, but where where real we're real role role modeling really is valuable.

I do think it's like most powerful sometimes when the peer specialist is sort of doing the thing that the individual wants to do, like they want

yeah.

be a peer specialist and that's what the peer specialist is. But I've also encountered a number of cases where indeed the peer specialist is also part time in school to become a social worker or something. And

Yes. Uh-huh.

that's what a client maybe wanted to be.

Mm-hmm.

And the peer specialists really can kind of role model in real time that that's possible.

Well.

But

Yeah. No, it's cool. I think you know of role models. I can shine some positive light on this and good things that are happening. We have actually one of our peers is shifting positions but also in school part-time and I think that has been a wonderful source of

you know, sort of inspiration for some of our people at Epic. And then we also so we're having we run a scit group regularly, social cognition group, and we have lunch and learns every month or so. And we had one of our patients come in and do a lunch and learn about CV building. And so she spoke about her own experience and then taught the people in the group not taught the people, helped the people to write improve their

CVs and resumes and it was really awesome to see her shine right in the work that she's doing and have the confidence to come back and then share that light with the group. So I think creating more opportunities like that, both within our own clinics, but then on sort of you know, a national and international level is super important.

Yeah, absolutely. Yeah.

So I honed in on the peer support because I selfishly had wanted to talk to you about that and ask that question.

Yeah.

Really, I I feel very strongly that there needs to be a better way forward or we can do more to support the amazing peers in all of our programs. But I want to ask you, in your mind, amongst these many hats you wear, what which hat or which work that you're focused on now is sort of

driving you

Well, I mean, all

of it in different ways. You know, I do think I worry a lot about poverty, about people ending up living in poverty. And, you know, we know even with early intervention, with kind of current models, it's not enough, right? for an an awful lot of people, not not everyone. And so it really moving the dial on that seems so fundamentally important because

People's lives are so profoundly shaped, you know, start to finish long after they've left, you know, a CSC program. So I do think that that is just incredibly, incredibly important. I also, so our EpiNet hub, and I don't know if everybody will know what that means, but it's an NIMH initiative to create these learning healthcare systems that are early psychosis focused in different parts of the country.

the theme for our entire hub or center is engagement. and that stems from a team of us before this this round of EpiNet funding used then the national EpiNet data to really look at where engagement is at. And it really kind of falls very, very short of where one would ideally like it to be. and so I think the work that we are doing around.

Really understanding. So there's people for whom current CSC is incredibly powerful. And then there's obviously kind of subgroups who for different reasons, it's not all one thing, are leaving CSC programs, disengaging from them. And that is such a critical question then, right? Because so understanding why.

And then we are right now piloting and then are gonna move into sort of a a real world, a pragmatic clinical trial, for an intervention that actually pairs a peer specialist and like a master's level social worker or a counselor who operate at the hub level or theoretically it could be the state level, but they don't work for individual.

CSC programs and they are poised to function as a external problem solver, intermediary, maybe even mediator in some cases. So anyone who is disengaging, is leaving the program, is self-discharging or appears to be at risk, they can self-refer, clinicians can refer them

and and or family members, right? So there's there's multiple paths of you know kind of initiating contact. And then the idea is can the team right figure out what the problem is? Maybe it's not being spoken. Maybe it's something that is resolvable. Maybe if it's a city that has multiple CSC programs, somebody would actually be willing to try a different one.

but really trying to, you know, in the truest sense of the word, meet the person where they're at and

Yes.

find some sort of solution that maintains in in engagement in the broad sense and I guess in the good sense, even if it isn't always engagement with the the CSC program that they started with. And, you know, we really don't know how this is gonna turn out. And it's of course, you know, challenging to implement.

Mm-hmm.

In a number of ways, but but I think this is really important work too. And again, it kind of goes back to this kind of animating theme for a lot of my work, which is, you know, bridging the disconnects. and so there's clearly groups for whom the way that we're doing things now is incredibly helpful. And then there's the groups of folks for any number of reasons that we're missing or we're not connecting with.

And really, really understanding why and being creative about how we can respond to that in ways that hopefully don't just lead to sort of trajectories of like long-term disengagement because on the

Right.

other end of things, been very actively doing projects on assisted outpatient treatment. and when a lot of people were interviewing, some of them did even start an early psychosis program.

And so often it is rupture and distrust, and then people become very disconnected from services. and so, you know, how can you make things right at the beginning to sort of stop those kind of those trajectories of alienation, distrust, disconnect from from happening. So I mean, both those things are like really, really

Yeah.

near and dear to my heart.

It feels very familiar. we're we we don't have a discharge date. You know, it was pretty clear up front that the value with what our patients and families the message that they were sending is we're comfortable with our team we're comfortable with our people and that's what we would prefer.

That's how we prefer to keep this. So we're like, okay, dope, you know, Serena and I never have new patients because most of ours been with us for like almost 10 years. and so there's that end where there's a systemic adjustment, you know, that like I know I'm not gonna end it because of some arbitrary length of time. I mean, that's that's my soapbox. We wanted to get on it, but like we adjust to what we're being what we're learning from.

people that are there. And then the on the beginning also with just that initial access, we really struggle with getting people from the referral source just into our door. and how do we make that part easier? And you know, a lot of the early detection is important, but also part of that is

being a familiar, you know, familiarity with this idea and, you know, to make it for the people that like calm touches, there might be a handful that actually need to come to our clinic. Not everyone, but but if we're bringing familiarity and comfort with even having the conversation, like will that bring our community will it make it easier for them to come in our door when when needed? so it's like this

Sandwich of of work, right?

absolutely. And and also

because there just aren't anywhere close to enough CSC programs, right, to

Right.

actually meet population level need, there are also a huge number of, you know, kind of young people experiencing early psychosis who are just missed for any number of reasons or literally there is no capacity to serve them. And I think that's a whole nother, you know, kind of

issue and then those who are referred but don't show up for for again for a variety of reasons.

Yeah. Right.

and everywhere I have had access to or seen data on referrals, sometimes even already with an eligibility screening that would seem to indicate, you know, almost certainly eligible. And then that's that's it. That's the last contact. So I think, you know,

Mm-hmm.

anywhere along the pipeline things can kind of go go wrong.

Yeah, you hit on I hate it that we have to wrap up, but we do. But I you hit on something that I think is super important. And Ashley and I were just talking about this last night. Just the like people, trainees, providers, social workers, they know what they know and they don't know what they don't know. And if they don't know about psychosis and early signs, they are gonna miss them. They are gonna misdiagnose. And I think there is a huge grap grap gap in our training systems. And we

I mean my soapboxes within social work and they're not being enough attention paid when in MSW programs, to helping young clinicians learn or new clinicians I should say learn about this. So I think there are many, many opportunities and if we all had, you know, a hundred hours in each day, we could be addressing them simultaneously. But in the meantime, we are going to take care of ourselves and say yes to what we can, say no to what we, you know, need to to help

sustain ourselves over the long course of our careers. All that to say, thank you, Nev. It was really nice seeing you.

And I'm glad we got this conversation.

Thank you guys. I do just want to say amen to we need early psychosis trainings for social workers. So that is so important and yeah, I would love to talk further about that.