Jenna Tregarthen is our guest today. Jenna is the CEO and co-founder of Recovery Record, and today we talk about technology and eating disorders.
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Full transcript –
Kathy: Hello and welcome to ED Matters. I’m Kathy Cortese, your host and our guest today is Jenna Tregarthen, CEO. Jenna is passionate about designing technologies that not only increase access to care but also improve quality of care. As a clinical psychology PhD candidate, Jenna’s expertise is relapse prevention and behavior change. Jenna teaches design for health service innovation and entrepreneurship courses at Stanford University Graduate School of Business. Jenna is also the co-founder of The Recovery Record Platform for Eating Disorders Management. Welcome, Jenna.
Jenna: Thank you. It’s great to be here, Kathy.
Kathy: Our pleasure today is having a conversation about the bringing together of innovation and the treatment of eating disorders. So Jenna, to get it started I guess my first question is how did your interest in the eating disorders community develop?
Jenna: Thanks, Kathy. It’s always a great question to go back to the beginnings and our beginnings still remain the source of my passion for this work many years later. It actually struck me when I was doing my clinical training in my PhD back in Australia that I was myself and other trained therapist were only treating 10 – 20% of the millions of people out there that were suffering with those devastating condition and I think that thought has crossed the mind of every therapist at one point or another. And when you think about the 80% of people that were not treating, you start to think about what’s preventing them from accessing care and a lot of that is around the stigma and judgment that still remains heavy on the shoulders of those that are with an eating disorder and sharing that they have a problem. It’s also about accessibility. People are leading extremely busy lives and trying to find a way as well as the means to connect with treatment and even to find that who I should be seeing treatment from, can be very overwhelming and there’s a lot of geographical constraint as well. We know that there are not qualified specialists everywhere.
At the same time I was giving my patients paper based therapy homework to keep up their good work and recovery in between therapy sessions and knowing that they probably were not going to be doing that and actually and feeling quite guilty I just couldn’t ignore the fact that I was adding another layer of bureaucracy and burden to their already complex lives and so, at the same time, there was an emergence of smart phone technology and it just made so much sense to me that a lot of the core tenants of evidence based treatment whether that be using coping skills in the right moments doing that self monitoring which had been so laboring intensive with paper diary as well as giving some positive reinforcement and motivation could be automated through an app and an app actually have an ability to celebrate those little victories in the journey of recovery that I as a therapist couldn’t share with my patients because I wasn’t there with them every day. So, that just made a whole lot of sense to me and we created – my co-founder and I created this horrible prototype of the app in two or three days taking these best practice, self monitoring phones and putting them in an app on the app store and within a couple of days, we had a couple of hundred users per day engaging which really validated this is a problem that a lot of people are experiencing and are looking actively for a solution too which is where it all began.
Kathy: And when you say this is a problem, you’re talking about eating disorder recovery and you mentioned significant obstacles like shame, access and I’m struck by – you used the word guilt that you were feeling when you were signing people homework but I also know as a therapist that the individuals on the other side who are given these assignments often times feel guilty too, already feeling guilty because they have an eating disorder. So let’s just lessen everybody’s guilt if possible. You have this other fascinating part of you which is the innovative part, the innovation and structure at a graduate school of business. It’s Stanford. Pretty impressive. What can you tell us about that and how this meeting of these two fascinating worlds really struck a chord?
Jenna: I actually came when I did a program in entrepreneurship at Stanford during my PhD and I — the approach to entrepreneurship and innovation really resonated with me that, through a process of doing feasibility trial after feasibility trial through research, we were never going to be able to create the kind of technology platform which really scales and has applicability at a public health level. And there’s a couple of reasons for that but one of them, the core reason is that technology – the best way to build technology is through a process called start up a lean development and also applying design thinking which means that you’re getting a lot of feedback from your users as you go, and making incremental changes. And so the design thinking process allowed us to — we interviewed [inaudible] of a 100 clinicians and patients about their experience of the problem, of access to treatment and engagement in treatment and we developed a prototype and we have had – we actually had over 10,000 suggestions from eating disorder community [inaudible] individuals who have eating disorder or provide us on what they would love and what their needs are and we’re building those back into the technology. So — and to me that made a whole lot of sense as well as when you think about distribution and dissemination, the app store has incredible range, 80% of Americans now are in smart phone and it used to be that we relied on partnerships or a sales team or other formats to disseminate treatments, training. It takes on average 10 years for a new treatment to become available and here is this pop on that we could create access to people who need this now. And the other thing that I really loved about Stanford’s approach to innovation that it’s inherently hypothesis driven. So as a researcher, the idea of having a research question and taking two to three years at minimum to answer that one simple question was pretty slow. Whereas now with hundreds of thousands of users on the platform, we can have a research question and answer in a relatively short period of time and so that’s actually I think is the next wave of research and we have a number of innovative research collaborations who are leveraging this mobile platform and data to recruit participants and run studies at a pace and a speed that simply was impossible before.
And so I think coming to Stanford really gave me a platform to learn about America’s healthcare system which is very different to Australia and understand the access varies a little more. To develop a model which could support research and to develop a technology which people actually used in their everyday lives at scale and didn’t just stay in our research study.
Kathy: Okay. So I’m going to ask you about something I understand, you have a specific interest in as a psychologist, as a researcher and as someone involved in innovation, which is what it takes to change behavior. Yeah. Like I just opened Pandora’s box but what would you like to comment about that?
Jenna: Sure. And it’s something that I’m passionate about and I – you probably can tell that I’m someone who really questions our core assumptions a lot and one of the assumptions that we’ve had is that a 50-minute increment in a therapist session is the best way to learn or even a month in our treatment center or these condensed periods of intervention whereas there’s a couple of theories around learning and development where that suggest that in the moment learning and lessons even if they’re shorter and more incremental, can catalyze behavior change more effectively. And so, I really take a distributed learning model to the platform and there’s a couple of tenants to that. One is — and if you look at Prochaska’s behavior change model you’re looking at what stage of readiness is a person and then if they are ready to engage in a behavior, you really need to catch them at the right time and having an acute action in the environment that reminds them to engage in this behavior because it’s new and it’s uncomfortable at first and so the reminders in the app start to keep people to focus on their recovery and to check in and they’re scheduled around meal times.
And then you’ve got engagement. A person needs to actually invest in their recovery to value their recovery, that attribution bias that we have. So if they’re investing in their recovery and reflecting on their thoughts, feelings, behaviors, they’re participating in that process and valuing it more. And then at the point that they actually do that work giving them an instant and salient reward and so someone – we’ve had people tell me that they cried when they first used recovery record because they expected to be punished after they confessed their feelings, their behaviors, things that they hadn’t been sharing and they were so ashamed of and then they received this really gorgeous baby hedgehog or some kind words from another user and it just shattered that stigma and really made them feel accepted. And so I think reward is something that we had really left out of treatment and that positive reinforcement which does close the behavior change loop because we need to be creating a positive association with that engagement.
Kathy: It sounds like that type of reward is so foreign to the eating disorder mind where you do receive something truly positive back about yourself. That’s the quality of you, about your value as an individual just in the process. I can’t imagine, but I can imagine that people were crying after receiving [inaudible]
Jenna: Yeah. I think there’s a lot of people who are holding that in on their own, managing so much pain on their own and it’s very cathartic to finally be able to express that and then to have – who would have thought a technology could be end topic but it can. It can hold you in that moment and give you that just what you needed in that moment, and so in that way we build trust in a relationship that I use. They know there’s no sharing on social media from the platform. It’s incredibly private. It’s incredibly secure and it’s a place that they can turn to and know that they’ll have that unconditional positive regard.
Kathy: I’d like you to elaborate a bit on the security there, the HIPAA compliancy so that both ends whether it’s the individual or the clinician who may be tapping into recovery record, people realize that this is very secure information.
Jenna: Yeah. And this was something that was non-negotiable for me. As soon as you decide that you want to be a technology platform which is housing and the custodian of this incredibly personal information, I think there’s a duty of care and indeed in US legislation it’s legislated that you must protect and take actions to protect that data. And we realized very early on that the eating disorder treatment field is not a technology, is not a technology field in need of people. It’s a people field in need of technology and those people and those relationships they’re at the heart of treatment and we need them to trust us. And trust is at the core of the platform and sharing and to facilitate that trust and sharing, we have to create a safe non-triggering recovery firming place and take away the question of security. So we’ve actually built [?] the data and recovery record is stored in a HIPAA compliant encrypted environment. Patient’s can have pass code, protection of their phones, so do clinicians. The data is encrypted on the device as well as in transit. There’s a lot of encryption but we’ve also through – I’ve worked with Kaiser Permanente and some of the large treatment provider centers have been required to achieve a level of security that even goes above and beyond HIPAA in some instances. And so, if we had to factor up indication would be just about as secure the banks, so that’s really important. But even at a very – we’ve thought about it not just from a legislation but also specifically if you stand in the shoes of someone with an eating disorder and where might that security breaches or violations happen and we’ve made the app even on their phone very discreet. It just says RR and has a bird, so anyone looking at that sign wouldn’t know that they have an eating disorder and they can actually set up to scrape notifications. So instead of having a reminder to log your lunch or your snack that might prompt questions from someone who happen to see that, they can write their own notifications that might be something that’s code word for bump [?] your lunch or it might be their own affirmation statement and what have you and so in that way we manage any push notifications on the phone to not inadvertently out someone. So there’s a number of layers to security and what that means.
Kathy: Right. Right. Thank you. Target audience. You’ve talked about the 80% that seem to be the people who weren’t receiving treatment in Australia and my guess is we’re not that different here in US for a variety of different reasons. So the breath of your target audience, just name some specific people.
Jenna: Yeah, absolutely and I do have the privilege of talking with our users on a fairly regular basis and they are really diverse. So I mean, high level stats we know that 30% of our users have not told anyone they have an eating disorder. So definitely there are those people. 50% of our users are using the app with a treatment team in conjunction as a part of care during some form of treatment. The majority are under 30 but I think that reflects population prevalence rather than engagement because we have a lot of older users on the app that are highly engaged and those doesn’t seem to be relationship between engagement with the technology and age per se. But in terms of like who are they, some of them are people who have come out of treatment and are using this as a way to keep themselves from relapsing and accountable and they say that they’ll notice some self relapsing, they’ll install recovery record and it takes them right back to their treatment center and they can hear their therapist voice in their head and they remember, oh yeah, this is what I have to do to get back on track. So it prevents that relapse. Others are using it to in treatment, so they’re having a relationship with their dietician, with their primary therapist and collaborating together and they’re getting feedback. And they’re really doing that hard recovery work and they have an allied team which are coaching them through the platform and that really understand the nuances of their disorder. And then there are those that are simply not ready to talk to someone and they’re really — this is the first time that they’ve taken a step to engage in help seeking and they might install the app and then through using it, realize that oh my gosh, this really is something that I can’t control on my own and wow, there’s a whole community and a whole world out there of people who are seeking treatment and I’m no longer alone in this problem and I’m ready to seek treatment. And we’ve got a connection through the app if they need a helpline so some of those people will [inaudible] and access care that way.
And there’s a portion of users for whom recovery record is all that they need. And that surprised us. We never really built recovery record to be just a self help platform but we did do a study at Stanford that looked at people who were using the app without any other treatment and around 40% of them could be classified in a less severe group over time just through using the app. So there’s a portion people [inaudible] maybe subclinical or even have a low threshold eating disorder and be using the app and it manages to prevent onset of a full blown eating disorder.
Kathy: Thank you. I’m going to just quickly reference your statement on NEDA for those in the listening audience who aren’t familiar with NEDA. It’s the National Eating Disorder Association and their scope is amazing and if you are not familiar with them, I strongly encourage you to go to their website and learn what they have to offer. So here’s my next question, because you are in the field and do so many — let’s just say like psychologically driven things, there is a research capability for this app? Is that correct?
Jenna: Yes, there is.
Kathy: Can you talk a little bit about that, please?
Jenna: Sure. So we actually have three missions. One is creating access to a evidence based treatment tool for everyone who needs and wants it and we now had our 400,000 person with an eating disorder use the app so I think we’re doing pretty well on that regard.
Jenna: [chuckles] The other mission is to increase the effectiveness of clinical treatment and provide that collaborative tool for practitioners and patients to work together and automate a lot of the aspects of care that are evidence based that clinicians haven’t had time for. But the third mission is to leverage the platform to increase our knowledge of eating disorders and their treatment. So we have a number of research partnerships and through the platform we’re giving people the opportunity to participate and some cutting edge clinical trials that they can – they were actually recruiting directly through the app. Next week we’re actually launching a 6,000 person randomized control trial and all the equipment will be via the app. So that’s quite exciting and we’ve also supported the Anorexia Nervosa Genetics Initiative and we will be the primary recruitment platform for the Binge Eating Genetics Initiative that’s also going to be announced in about the same time as this podcast will be launched. So I’m not keeping the post too much there [chuckles].
But also there’s a number of adaptation. People are wondering with this – we’ve had over a billion data points on eating disorder which makes recovery record the largest repository of data on this condition. How can we use that to learn more about eating disorders and so there’s a number of exploratory studies that they’re looking at. There is a group in Nova Scotia that are looking at coping skills, self efficacy through the platform and how this builds generalization of their skills from just in treatment setting to everyday life. Rhonda Merwin and the group, fantastic group at Duke have developed with us an adapted version of the app for co morbid type I diabetes and eating disorders. And this is I think the first specialized tool for that population that have had not available to them. So we’re really excited about that but probably the most cutting edge thing that we’re doing is our clinical trial with Stanford where we’re starting to build in machine learning and rule based content in the app with all of that data to try and figure out based on who you are, what are the skills and goals that we should be hoping to set with you that will give you the highest likelihood of achieving an outcome and so starting to really personalize the content in the app based on a person’s symptoms and usage to try and based [?] their outcomes?
Nothing like that has been done. I don’t believe. Within or outside of the eating disorder field. So yeah, I mean this is – we have some incredibly strong researchers in the field. We’re very privileged to be working with and so I think those [?] bringing together cutting edge technology plus research means that we should have a pretty exciting couple of years of knowledge creation ahead of us.
Kathy: Your words speak your energy and enthusiasm and just how far we don’t know this work can take us. I also would just like to highlight how grateful I am that you agreed to do this with us because of your comments around trust. And I feel very privileged that we can present the person of Jenna who has a voice, who we can hear her caring, we can hear her energy, we can hear her level of respect for individuals with eating disorders and I think just that trust element is so necessary for recovery and I truly do appreciate having this opportunity to speak with you. Any closing thoughts?
Jenna: I just – I think and I’m really excited about the work of ED Matters and a dialogue. I think one thing that I’m the most excited about and I think it’s really happening in the eating disorder field right now and through conversations like these, is the silos are breaking down. I think there’s been a lot of highly dedicated people doing incredible work on their own or in their own world in the past and now those people are starting to talk and share their skills, their strengths and including the ED Matters Network to say how can we really do everything that we can to help these people and to have breakthroughs. And we can’t do it alone and I really believe that the collective community is what will make a difference and so anyone I guess who’s listening and wants to collaborate with us or has ideas about the platform or how it can support the future of eating disorder research and access to treatment, please feel free to contact me firstname.lastname@example.org. And thank you Kathy and ED Matters for hosting me today. It’s been a privilege.
Kathy: Thank you so much, Jenna. And our guest today has been Jenna Tregarthen, CEO and co-founder of the Recovery Record Platform. Thank you.
Jenna: Thank you.