Your Health, Your Data: Taking Back Control of Your Medical Records
Try myStoria for 6 months free. Use code: G82E54TC
What happens when years of fertility treatments, conflicting medical advice, and nearly $100,000 in expenses leave you with more questions than answers? In this episode, we sit down with Jessica Chalk, founder of MyStoria, to explore how her deeply personal experience with infertility, pregnancy loss, and navigating a fragmented healthcare system inspired her to create a better way for patients to manage their health. Jessica shares the emotional, financial, and physical toll of her six-year fertility journey, including a delayed endometriosis diagnosis, and explains how those experiences revealed a fundamental problem in healthcare: patients are often expected to coordinate their own care without the information or tools they need to do it effectively.
We explore how MyStoria is working to change that by giving patients ownership of their complete medical history in one accessible digital platform. From collecting records across multiple doctors and hospitals to integrating wearable health data, tracking symptoms, and using artificial intelligence to identify patterns and answer questions, MyStoria aims to make navigating healthcare less overwhelming. Jessica also explains how the platform's medical concierge team helps patients retrieve records, prepare for appointments, pursue second opinions, and manage the administrative burdens that so often fall on patients and caregivers.
The conversation also examines the growing role of AI in healthcare, the importance of patient advocacy, and why having access to medical records isn't the same as truly owning and understanding them. Rather than replacing physicians, Jessica believes better-informed patients can build stronger relationships with their doctors, communicate more effectively, and make more confident decisions about their care. Whether you're managing a chronic condition, caring for a loved one, or simply trying to organize your medical history, this episode offers a compelling perspective on what patient-centered healthcare could look like.
TRANSCRIPT
Host
Welcome back to the podcast. I'm sitting here with Jessica Chalk from MyStoria. Thank you so much for being on the podcast, Jessica.
Jessica Chalk
Super excited to be here, Jon. Thanks for having me.
Host
My pleasure. You have an interesting story and it's one that a lot of people struggle with on a personal level that drove you into this world. And I was wondering if it's not too much of an imposition to kind of have people understand how you came to the healthcare sphere in general from your own struggle, your own journey, if you're willing to talk about it.
Jessica Chalk
Yeah. yeah. No, totally. So I first I was not in the healthcare space before starting my storia. And I came at healthcare by way a number of people do as a patient. kind of having gone through my own journey as a patient and now as a caregiver. but specifically kind of my own journey. I back in, you know, 2015-ish time frame started to think about okay.
I want to have kids, like what what do I need to do to have kids? Like there's all this, like, I I think I think something's wrong. I want to dig into it. And I kind of went down an exploratory journey of like, am I fertility ready? Is like the best way I at the time could put it. Like, what do I have to do here? And that kind of quickly turned into a PC PCOS diagnosis, which is now PMOS.
Host
Mm-hmm.
Jessica Chalk
And from there I went home and Googled. It was like, my God, I'm infertile. And so that then launched my like super A-type kind of personality around like, what do I need to do now to get on a list? I'm from Canada and sometimes lists to get into specialists are years long. And so I was like, what do I need to do to start now to like be ready for when I I wanna have a I wanna have a baby? And that was kind of the start of my journey, but kind of the summary of that journey in general was that.
I was diagnosed with PCO PMOS. I got into a fertility clinic. They basically said, this is easy. You're gonna be fine. no worries. We'll just like start treatments on the earliest stuff and the easiest stuff, and you'll get pregnant, no problem. Everything else is good, you all check out, no problem. And then we started to have failures. And then I started to kind of dig into my own: like, what's going on? Why are we failing? Like, I thought this was supposed to be easy.
You would kind of initially walk in a fertility clinic and you're like, I'm here. The problem is gonna be solved. This is gonna be so easy. And when failure happens, you start to kind of question what's going on with me? What am I doing wrong? Like, is there something else I could be doing? Is there another diagnosis here? Because particularly because it's private pay and out and out out of pocket and expensive. And so I went through many more years of kind of trial and failure, and trial and failure.
I had a miscarriage that ended up being going wrong. Two doctors are telling me to have that miscarriage two different ways. And I just, it ended up being not the right, like just didn't plan pay out, plan out whatever the wording is. I can't even figure out my wording right now, the way I wanted it to. Lost my ability to carry through that miscarriage. And then in year five of year six of my kind of try and fail, try and fail journey. I was diagnosed with endometriosis. And up until that year five.
Host
Mm-hmm. Mm-hmm.
Jessica Chalk
I was really kind of in this like unexplained infertility diagnoses outside of my PMOS because nothing else was making sense. And so at this point, I was about $100,000 out of pocket into it. We were just exhausted. You know, now I have endometriosis. A lot of the medications and treatments that I was taking were really not endometriosis friendly, and we didn't have it in us to keep going. So for me, we walked away from our journey. And as I looked back and kind of reflected on.
This new identity I have is, you know, I wanted to be a mom. I'm now not gonna be a mom. What happened? I tried so hard. what came out for me was the fact that like I was trying to be my own care coordinator. Like the I liken it to like a general contractor role where I was working with all these specialists. I was trying to get everyone rolling in the same direction, nothing was working. And I was just like,
I I want to fix this. Like I want to make it easier for people that come after me. There were so many I wish I would have known moments. There's so many kind of like big sister, little sister style moments that I want others to know that are going down the route. And so I kind of turned my life and my life's purpose and my kind of, in other words, identity into helping patients and kind of like making change in a system that I felt really.
failed me as a pr as a patient, no matter how hard I tried, and even no matter how how the doctor tried the doctors tried to help me.
Host
Wow. Five or six years of a journey. Is that typical in the infertility space?
Jessica Chalk
I th I think the latest research out there is about, you know, cost, like the the terminology used is time to baby, money to be cost to get to baby, and types of treatments. Like there's a number of different ways to kind of quantify it. And I think the t average time to baby for people is about three years or so. So for us, we were definitely not the average. you'll hear from a lot of fertility people.
patients and even probably patients in other journeys now that I'm a caregiver, you know, the stats are never on your side. and so the stats were definitely not on my side on the time to baby, even on the money to baby. You know, their average cost to get to to get to baby and if you're going through IVF is about forty, forty five thousand. I think that's the latest numbers, roughly. And so so we were really kind of double that.
Host
Mm-hmm, mm-hmm.
Jessica Chalk
that that journey on our end. And I've met many people have spent much more than I have and spent many more years too. And so it's really a a journey that leads people in all different sorts of directions and all different lengths of money, time spent.
Host
Yeah. Yeah, it's and not to mention the emotional turmoil and the toll it takes on you and your partner the whole time. I mean, it's I can't imagine that it's an easy ride.
Jessica Chalk
my gosh.
A hundred percent. Like that's the thing. And and I I'm speaking specifically on my own fertility journey right now, but the emotional toll, the financial toll, like how many people like you it's not like we had a hundred thousand dollars sitting there saved. We've figured out different ways to make that money happen. But a lot of people don't even have that option. And so, you know, the emotional toll, the financial toll, the physical toll of going into the clinics with little notice every day, every other day, some people don't even like.
I live somewhere now where the closest fertility clinic is three and a half hours away. So how do you actually make that happen? and so it's it's just there's so many different, you know, relationship-wise, just everything that your fertility journey impacts and going through a fertility experience. It really is it's identity changing, regardless of kind of becoming a mother or not, or parent or not. And I'm a mother in my own way, and there's a there's a lot of the grief associated with, you know, pregnancy loss, but
Host
Yeah.
Jessica Chalk
When it comes to kind of those journeys, like it there's a lot of different layers of grief and trauma that come with a fertility journey for sure.
Host
Yeah. Well I'm sorry about all the struggles. tell me about the solution that you kind of come up with for part of the journey that you kind of noticed which was which had become my storia and what does it do first?
Jessica Chalk
Yeah. Yeah. So my story is really a personal health record where we go and get all your health information, your original medical records, all of the detail, your lifestyle data, your at-home hormone testing or wearable data or whatever else you've done. we build that we help build that for you. So we actually do the work of going to build that for you. And then we work alongside you to make it easy for you to maintain your health record as in
add health journaling in there of your symptoms and we'll go get continue to get your medical records and kind of build this owned you own it, you can use it, you can share it, you can build on it, personal health record for patients. Around that, we also have the ability for them to talk to their medical records, ask questions, query their medical records, ask us then the tooling in my story to spot patterns, help them navigate care and educate them, help them do research.
And then if you wanted to, we have what I call like health personal assistance, medical concierge, where there's amazing humans who are available at any point in time to kind of join a chat or join a video call, and they will take any sort of work off your plate. calling for a second opinion wait list, like correcting your medical record if it's wrong once you've got it. That's happened quite a number of times.
just like literally anything. And kind of the premise of my story as I was going through my own fertility journey, because I spent time in Canada, I spent time in the US, I've looked at like going to other countries to try to get novel treatments, to try to like figure out my own ability to carry and can that be fixed again. And where I kind of aligned on that amongst talking to my dad who was going through a heart journey, my stepmom was going through an oncology journey. I wasn't yet a caretaker, but I'm even feeling it now again, is
You know, it's not just about going through fertility treatments. The when you get into the healthcare system, probably preaching to the choir for anyone listening, it's a job. It's it you have to lean into your own care. You have to advocate, you have to do the job of like trying to get all these different specialists rowing in the same direction. You're doing the admin work of insurance and collecting information and like trying to understand something, tracking your symptoms so you can communicate that. And unlike every other kind of stakeholder in our own care.
Jessica Chalk
We don't have a lot of support or tooling to be able to do that. And so I know that's what GNA supports and does as well. And so I, you know, I was I anchored building something that was that was in the realm of helping patients do the job of being a patient better and more efficiently and take some of the work off their plate. And then I quickly realized that, you know, you cannot do that job without actually having your whole story in your own hands and understanding your own information. And like,
Two simple examples of that that came up in my own journey. I really wanted a second opinion, but in order for me to get a second opinion, I actually had to go onto their portal and fill out this detailed form that would give the doctor enough information to spend an hour with me giving me a second opinion for $500. And it was like,
What medication dose did you take on cycle day three of your IVF cycle? And then when was your trigger shot? And how many hours between your trigger shot and your actual retrieval? And there was just like this complicated questioning that I didn't have my information. It wasn't even like easily laid out in a a portal at the time. And even if it was, it wasn't like translatable into that document. And so I was basically going off memory, trying paying $500 to get a second opinion, which seems
Host
Wow.
Jessica Chalk
Absolutely wild. And so part of this is like the agency, like access to your own information in different portals isn't agency over your own care. But this and so it was like getting that. And then the second piece for me of getting your medical records in was the idea that every single doctor I talked to, I was repeating my story at every appointment because.
Host
Mm-hmm.
Jessica Chalk
One doctor didn't know I was taking a iron supplement. And then another doctor was telling me to take X medication. And it was like, it was like everyone was kind of going in separate directions. And so I was kind of the main you know, the the the continuous thread through everything in every appointment, in every in every meeting. The doctors are so busy, they don't have time to have my whole story in their hands right away. And so there was kind of like a mix of all these different reasons where
Everything that what I wanted to do with my storia was anchored in get your own health information in your own hands, own that story for yourself, build on that over time, and that gives you agency over your own care.
Host
And one of the interesting things that you kind of glossed over that I wanna spend a second on is you're fetching a lot of their health information for the people who work with my store. How does that work? And do you do it in Canada and the US? Do you work in other countries as well? 'Cause there's obviously a lot of different red tape at different places.
Jessica Chalk
Yeah. Yeah.
Jessica Chalk
100%. And that's actually the red tape is actually one of the reasons why some of this stuff is very still manual and for for the foreseeable future will always be. Like we talk a lot about data fragmentation and how interoperability is a problem. And I know it's getting better in the US. Canada's even further behind. but the way that we work at Mystoria is our medical concierge team is really they're all nurses. They just are not using their nursing license. Like we're not diagnosing treating and all that stuff. They're so
we kind of call them medical concierge. And they're working alongside the patient to basically the patient fills out their account in MyStoria, which then auto fills out a for or requests their information form as and they don't have to fill out their doctors, their this, because they're naturally giving that information into their own Mystoria account.
They review everything, they sign off and say, yes, I'm comfortable with the medical concierge team doing the work for me of reaching out to all my doctors and going and hospitals and surgeons and whatever else and getting my medical records. So we rely a lot on the patient's legal right to have their own information in their own hands. So we'll go and request it, follow up, get that information. We're available. There's different portals with QR codes and share codes that our pa patients and users on my storia can share with us.
So we we do a lot of that kind of manual outreach where and then other times we can pipe in data by connections into different EHREMR systems. But for the most part, every almost I wanna say like 90 plus percent of the users in my story right now don't have one single portal where all their health information is. And so no matter what, there's always been some manual work that we're just trying to take off that user's plate and we'll go do it for them.
And kind of the key thing with us in Mystoria too is it's not like it's your data. You can download it, share it, delete it, do whatever the heck you want. We're not doing anything with it. It's like think of like a just a vault. And we just happen to give you the tools that if you want to use those tools in Mystoria, you can. If not, it's just a storage place for your own health information for when you need it.
Host
And it's an online da database that people can just access whenever they want. So it's it's in the cloud essentially instead of having like a, you know, three ring grinder that's four inches tall or something like that.
Jessica Chalk
Yeah. Yeah. We've got a lot of interestingly like we're learning as we go. Cause I I mentioned like I I'm now a caregiver in my experience as a caregiver, I've now got my family members' information all in a my story account that we use on a regular basis. even like for example, to record at a doctor's appointment, we do that a lot because there's so much information in there. You want to go back, you want that information then in your own personal health record, what they said, what the medication names were, the experimental medications you might look at.
And so when it comes to my story my gosh, Jon, I'm sorry, I lost my tr I went on a rabbit hole and then I lost my train of thought. What was your original qu I do this a lot.
Host
We were to the original question. That's okay. You had me riveted it because you're talking about your family. It's all in one digital place essentially, so you can access it easily.
Jessica Chalk
Yes, yes, yes, sorry, I was going where I was going with that is we've learned from pay people using my story. So we have, for example, oncology patients that like have a physical cancer binder that they take with them everywhere. And so we actually digitize that for them and then that gets uploaded, then they can have their original paper copy, but you go into a doctor's office and they ask the last time you had X medication or done Y test, it's a simple question in in the app to your to your
digital binder your digital vaults of information that can pop up. And so that's been an interesting learning from people. Like we're really building with alongside patients and for people and different care journeys. And it's kind of been cool to just like just see the impact A we can have but B like ways in which people need support on the job that they're doing as a patient. And then just trying to kind of streamline that as best as we can. If not our medical concierge team will take some of that work and do as much as we can for them.
Host
And if people who people who aren't using my story and they're trying to solve this problem today, what do they what do you find people are typically doing?
Jessica Chalk
so I think like there's a lot of like there's a lot of big tac, like a lot of people are using ChatGPT right now to to ask questions about their health data or CLOD or whatever AI tool that they're using. And kind of the way that I see the world today is that AI is not going away. There's a lot of value in healthcare. There's also a lot of like careful implementation implementation of AI in healthcare that we talk about a lot. But
As you get to know how to use AI and as the world adopts AI more and more, we're gonna kind of realize that the tools, the LLMs, become so much more powerful when you've got your own context and you have your own information history in your own hands that you can then go and use. And the choice as a patient to download, have that information, own that whole record, to choose which LLM you want to use, an AI tool you want to use out there when you want.
to be able to kind of have the ability to have a human in the loop to verify something or to research something or to do something is kind of the way I see the world going. And so there's a lot of kind of competition around well, ChatGPT being kind of a competitor that for some people in the US can pipe in some of your data through HealthX.
But that's not your whole that's not your whole story. That's not your lifestyle data. That's not your symptoms. That's that that doesn't have full context all of the time. It doesn't have your own information in your own vault in your own hands that you own. And so there's a there's a number of that. At the same time, beautifully, there's a number of different like medical concierge, telehealth kind of style companies that don't have your whole information in your own hands either. And so
We kind of see ourselves as more of a layer underneath that is co goes with the patients wherever they need to go, that gives them the freedom and choice to kind of use their own health information however they want. we also see a lot of like wearable data companies all trying to kind of come together and work on and like, you know, coordinate your period tracking app with your heart tracking app or whatever else it is, but the kind of
Jessica Chalk
Sad thing that I see about that in terms of the patient and the practicality of the job we need to do is that that data is not in your own hands. Like, what does that chart mean in the context of your medical record? Like, what if you just wanted to have that information and take it and you're leaving to another country and moving there? And how do you get all your health information over there? Or you hurt yourself somewhere? And so the the the the big thing I think that I see the and the big belief I have in market and what I talk about all the time is that.
Owned personal health record and own personal health information. Like it is your health, it is your body, it is your data, it should be in your hands. And so I kind of see a market that's all kind of coming around the cool use of AI, the ability to access remotely different kinds of support services. And then I kind of like we're seeing this growing body of people that are building out kind of tools that bring all your health information together. The question is, do you own it?
Host
Right. So it's an empowerment tool, right? That allows you to kind of have it in the palm of your hand. You don't have to be beholden to one insurance carrier or one hospital or one anything. It kind of like you said, it goes with you. And and that do you find that that allows you to get a better quality of care? It allows you to get quicker access to care because you have answers at the at your fingertips that you don't have to go digging for. That would be my assumption. Is that right?
Jessica Chalk
Yeah.
Jessica Chalk
Yeah. Yeah. Yeah. And yeah. And and you know, I talk a lot about this. It's like it's not a conversation on and not not that you're suggesting this, it's it's not a conversation on anti-doctor. It's it's a system that is so built so far around how the system has always worked that you've kind of got this patient that has the most to lose, the least control over their own care, the the least weighted seat at their table of their own care.
That is also happens to be the constant in every room and every symptom that they're they have. And so, you know, it's not really about it's not about not having like your information in your hands equals a bad experience with the doctor. It's actually quite the opposite. Like if you had a complete understanding of your information, if you use the amazing AI tools out there to better understand your your health in a way, if you can communicate that in a way with your doctor that's more effective.
effective in terms of like their understanding what you're saying, you understand what your health is saying and it and your that conversation is prioritizing the information goes back and forth. There's a beautiful impact to the healthcare system in general, but more importantly to your own care journey. And that's for me, what I've experienced even in my own caregiver world of trying to get to a diagnosis, which is which has been very difficult given the symptoms.
As well as in my own journey, what I wish I would have had is that tooling in my own hands, the agency to get a second opinion, the ability to communicate information accurately, to even just like I see it kind of a my story being a bit of a translation layer. Like you're a patient, you don't talk doctor, the doctor only has so much time. Like, how do you make sure that you're communicating your top concerns and all your concerns in a way that
they're they're able to take that, run with it, correlate and get dig into dig into information with you. And so I see a lot of benefit in general, not just with my storia, to having your information in your own hands and then using the tooling that we have available to to just better work alongside your doctors.
Host
How long does it typically get someone to get set up with their health records and how much work do they have to put in versus, you know, the medical concierge team doing it on their behalf?
Jessica Chalk
so there's a couple things. One would be really you just have to create an account. you could use so we've got like a voice feature. I'm a big voice person nowadays. Like I was so against the voice messages back in the day and the audio message I get from friends that are five minutes long. I'm like, for the love of goodness, just text me. but now I'm big on voice. So you could type everything in, as in like you could just talk to our AI assistant and say, Hey, I went to this doctor in this clinic, but I don't remember the particular doctor. I had a surgery here.
I did this, I did that, or you could literally just voice record yourself being this is my whole health story the way I remember it. And then we would go do the digging and kind of pull the pieces together and auto kind of like build that storyline for you, fill everything out, and then all you have to do is kind of review, properly review the kind of your medical records request authorization form, make sure all the information's correct across a number of different providers, and then use your finger on the app and just sign it, and then we'll go get it for you. And so.
It just like the more i if you don't have that information, then you can book a a met meeting with our concierge team and they can walk you through a half an hour call and get all that information from you. So it's really dependent on how people best want to how people best want to go about just telling us where to go look for their data.
Host
Whatever whatever their their more comfortable way of doing it is. But even kind of worst case scenario is you can meet with somebody for a half hour and they can extract the information just by talking to you. So that sounds kind of that's pretty convenient. How do people g actually get in you know, get involved and create their their account on the app? I'm sure there's a lot of people who would want to c take a look at it.
Jessica Chalk
Yeah.
Jessica Chalk
That's exactly it. Yeah, that's exactly it. Yeah.
Jessica Chalk
Yeah, so the account my storia has a default free mode. And so if you download the app Mystoria, you can just download and get started. I will, Jon, send a code for like the six months of our premium kind of feature free. The really only difference is the fact that the concierge medical concierge team just does a decent amount more like hands-on work with you. But if you don't need that, you've just got the free experience that you can just use. So I'll give you that after we get off here. But
the big thing is like literally
Host
I'll put the I'll put the code in the show notes for everybody so that so that we have it.
Jessica Chalk
Perfect. Yeah, perfect. And then yeah, just download that. If you have any questions or just want to chat to, like please reach out to me on on Instagram. It's just Jessica L. Chalk or LinkedIn or emailed. I can share my email as well. we're really like just a bunch of patients building for patients and and trying to kind of solve our own problems. So I'm all ears on, you know, any sort of thing that you need, how what help you need, any questions you have, anything at all.
Host
Jessica Chalk with my story I thank you so much for being here. I really appreciate your time.
Jessica Chalk
Thank you, Jon. Thanks for having me.
