Jessica Chalk Spills the Tea on Organizing Your Health Story in One Place

[00:00:04] Welcome to HITea With Grace, where we spill the tea on HIT. Today, I'm honored to welcome to the pod, Jessica Chalk. Thanks for joining me today, Jessica. Thank you so much for having me. I'm super excited to be here. So tell me a little bit about your healthcare journey experience that brought you to the pod today. For sure. So a number of different kind of chronic conditions that I have and I live with, but the number, kind of the big thing was I went through a fertility journey.

[00:00:31] So spent six years in fertility treatments in Canada and the U.S., diagnosed with unexplained infertility, kind of when they couldn't figure out what it wasn't in the obvious. I spent over $100,000 and just ended up walking away. We couldn't do it anymore. And so there was a number of things along that journey that really made me say the experience of the patient could be better. The way the system works doesn't fully make sense to me.

[00:00:58] Like, what can I do to help people that come after me or help doctors in the system? And so that's kind of how I've ended up in this space. Wow. I'm so sorry you went through that. And I am just really grateful to you for being here today and sharing your learnings from the experience with all of us. It's something that I've heard from a lot of my listeners that they have experienced and they feel so alone in it. And so you being willing to talk about your experience is just really brave and really an amazing learning for us today. Of course.

[00:01:27] So at what point did you realize you were the only one keeping the file after six years, more than $100,000 in treatment? I had found like as my journey was going along and I would see failure after failure in each different treatment cycle. You start to like when you first get to the clinic, it's almost like a breath in. It's like in a breath out. It's like, oh, my God, I'm here. My solutions to my problems are here.

[00:01:52] And I was kind of not set up by the doctor at all, but set up in my own mind and in the way that I was thinking to be like, okay, the solution is just that I'm at the fertility clinic. Now I just need to listen to what they say and I'll go there. And you kind of like after I saw a number of failures, I realized, hey, you got to kind of lean into your own care. Like doctor knows as much as you tell them. I had to work with my GP to get some stuff done. Then I had to work with my OB to get a couple other things done.

[00:02:19] Then I've got my fertility doctor and then I would go get a second opinion. And I kind of realized in the moment of like failure where I was asking questions, what I was trying to do was repeat my whole like history and my information and all this like at home hormone data that I had and my period tracking and all these different things to the doctors in a 15 minute appointment. And that by the time I like downloaded to them, all of this information, I felt like they needed to know about me.

[00:02:47] There was such little time to actually have a conversation on and questions and dig into like what was in that appointment because I had like prepped so hard for the first piece of it. And so I found myself like trying to get everyone rowing in the same direction, trying to like repeat my story at every appointment, make sure the doctor knew all the stuff that they needed that I thought they needed to know. And that was for me the first time where it was like, I don't even have access to all of my health information, let alone like I'm going off memory right now.

[00:03:17] And so then that led me into I want to get my own record in my own full record in my own hands and add all my wearable data and all my period data and all my family history and all these other things into one place that I can then work off of to get through my care. What did you find got missed by the fifth retelling of the story?

[00:03:38] Like what are the things that are missed when you have to constantly be doing that retelling and where there's just a lack of leadership generally from the health care system that's supposed to be serving you and you have to be the CEO, you have to be the leader. What's getting missed in that telling of things? So I liken the role, like you said, like you have to be the CEO, the one that's leading your care. I always liken the role to like a general contractor is because like you're trying to get all these people all kind of coordinating amongst everything.

[00:04:06] And then it's just such a weird concept where you're in the room and my dad always used to say this to me where never be in a situation where you have all the responsibility and none of the control. Like that is not an ideal situation to be in. And I feel like that's the case for like the patient experience. And it's not by because the doctor, it's like how the system is designed around it. And so I felt strongly that I need to be able to lean in.

[00:04:28] And by the fifth retelling, which was this fifth retelling was kind of when I was like, I need to go get my actual medical records in my hand because there's so much data. And there was so many times where the doctor was like, oh, I don't really care about that level of data from you on the wearable information. Or let's just focus in on this, that I would make decisions pre what ChatGPT and AI could do to help us prep. And I would overemphasize on one thing and forget to tell another thing.

[00:04:54] Or I wouldn't even realize that in their record, they had some information on something. And so it was like this incomplete, scattered information download of stuff that was like at best what was top of mind or what I had the time to prep for. And that was like really the premise for even just like give me actually my whole health record in my own hands. Allow me to go get a second opinion. Allow me to like go make these choices for my care.

[00:05:22] And most of it is dependent on what's your actual health history. Very true. Now, federal law says our medical records belong to us. So tell me a little bit about getting the records. Was it a challenge? Yeah. What does it take to get them? Is there a request form, a fee, a wait? Do you have to deal with fax machines or do you get a CD-ROM? Like how does it work? And how did it was? What was your experience in that? Yeah.

[00:05:48] So because I had been to so many clinics and been to clinics in both the US and Canada and then gone to specialists, like I had a brain MRI in Buffalo because the wait time in Canada was like eight months or something like that. I had a different experience entirely at almost every clinic that I had requested my information from. And so one clinic charged me like a dollar a page to get my medical records.

[00:06:12] Another clinic basically was like, sorry, you got to go fill out the freedom of information form on our website and go do that. Then it has to go through a process. And so while I wanted to get a second opinion like next week because you're in a phase of like, I want to go with my health care, my treatment journey. I felt like the process of trying to get my medical records was just like, really like if I could summarize it, it was a big delay.

[00:06:34] And so one of them came through, I had to fax it to my mom's work because at the time I didn't like my husband didn't have it. We don't have a fax machine. And so like her work did. So I'd fax it there, which is like obviously slightly uncomfortable, but like it's your health information, but it's the only way to get it. Another, I had to go pick up a USB because the file was so large. So I had to actually go drive and pick up the USB. The brain MRI came in a CD format. So I had to like screenshot, find something that had a CD and screenshot it.

[00:07:03] It was just like, another one was like almost as if they logged into the EHR and like printed it, but it printed with like, it would be like TSH on one line and that's it. And then it would be right under that 4.5. And that it would be like, so it was like, I want to say like 50 pages only because it was like one word or one acronym or whatever per one result per line. And so like, what do you do with that? So I got all this information sitting there. I was like, I have no idea what to do with this.

[00:07:33] Cause like, first, I don't even know what half these acronyms mean, but second of all, like, how do you actually understand it? So I ended up through trying to get all of this information. I think I spent probably close to $500 ish in terms of like costs trying to get my records. Then I just transposed. Like I took a whole weekend, one weekend and I like literally just like typed it all into an Excel spreadsheet one by one over. And that was the start of me being like, why is this so hard?

[00:08:00] And also why does every doctor have different information about me? And also the lack of urgency and that delay. I mean, you're dealing with your life on the line and you're having to deal with these delays, which are delaying care and diagnosis that could help support the journey. It's a total lack of like understanding of the patient urgency. A hundred percent. And I think like there's like the good old days where everything was paper charts.

[00:08:30] And some of my doctors literally had paper charts. I think that was the facts, probably the facts one. I don't remember offhand now, but a good portion of them now, it's a really a couple of clicks to download your record and send it over. And so why it takes like in Canada, the rules are we have the legal right to our medical records as well in Canada, similar to the US. In Canada, you have 30 days to deliver it. And I found that most people would take the 30 days if I wasn't following up.

[00:08:58] And so it becomes a bit of an unintended adversarial relationship when you can't get your records right away or it's taking time because you're following up, you're following up, you're following up. Yet you're not trying to be like, there's this power dynamic that you sometimes feel in the doctor's office too. So yeah, it took forever, like the money, the time, then like in a format that you have to understand.

[00:09:20] And so it just, it was like, it was like a full-time job on top of my general contractor job of being a patient, just trying to get a sense of like my medical record. And like I said to you, literally every doctor had a different version of my health history. Nothing was consistent across the board. It wasn't like one doctor had all the information, like they all had a piece of the puzzle. And no wonder they were having challenges finding answers for you when none of them had the right information and the correct information. And it wasn't organized in a way they could all understand it.

[00:09:50] You mentioned to me a story of a friend of yours that landed in the ER across the country from where they last had emergency care and the hospital records were non-existent. So tell me a little bit about that story and what your personal experience was, what your friend's personal experience was, and who is really accountable when the answer is nobody, when it comes to a situation like what your friend and you went through. Well, that's so on his journey.

[00:10:19] So he lived in a couple of different provinces. And so his health data was kind of scattered across provinces. But four years ago, he was in the ER in Alberta for a condition that was life-threatening, like he could have died. And so there's two things like he kind of got through that journey, was fine. But then fast forward to like a month and a bit ago, ended up in the ER in Ontario, where it was the exact same symptoms and like feeling that he had the last time he was in Alberta.

[00:10:48] And so because we happen to be big advocates for get your own personal health record, he happened to have his own personal health record in his own hands when he ended up in the ER in Ontario. But he realized two things in this journey. Number one, his health record in Alberta said he had a heart attack. He did not have a heart attack. He had a pulmonary embolism. And so the record is wrong. So if even Alberta was to like talk to the Ontario hospital ER that he ended up being in, the actual medical history is incorrect.

[00:11:17] So that's like a whole other discussion around like you want your information not only to get through care, but also like make sure everyone's operating on the ground source of truth. And that's correct. He knew he needed to get his records. He found out that he had an incorrect record on what this life-threatening condition was. But on top of that, in the ER in Ontario, they had absolutely no context that he almost died from the exact same conditions and symptoms that happened four years ago in Alberta.

[00:11:47] And so who does this like, at the end of the day, going back to like all the consequence, none of the control, like who ultimately does this follow on? Ideally, it's a healthcare system that has a way to completely talk to each other and include all this lifestyle information about you and personal information about like your wants and needs and budgets and wishes and cultural religious beliefs. But like it's really not practical. Both Canadian and the US have been trying to solve the fragmentation problem for so long.

[00:12:12] And so that came down to like, if he wasn't able to communicate in the ER, which most people like, if you're going through something serious, you're not always able to communicate or you're stressed or whatever. But he could actually pull up his information and say, no, I had a pulmonary embolism and these were the symptoms. And this is what I think you need to look for. And I think like, it's not, again, it's not a, the doctor's trying to be negligent or the doctor doesn't not want to know. So it's literally the data interoperability.

[00:12:41] It's the actual sharing of information that just comes back down to, I do think at the end of the day, the patient is going to be the best single source of truth for their own care. And so as much as it pains us to be able to have to like repeat this information and share it and make sure everyone knows it, history says that you kind of have to. You have to in the way that the healthcare system is working right now.

[00:13:02] What a crazy experience for him, but definitely showcases this need for everybody to have their own records and have access to them so that if something were to happen, ER or not, that they can be a better operator of their own care. Most people have three or four patient portals and they kind of assume they're covered. But what's missing when they're not all put together? Yeah. Well, it's still that the slice of information that a particular doctor has.

[00:13:31] So you may have three to four portals you log into, but your doctor typically has one EHR, aka one portal that they use and they work off of. And so in some cases, that's not the end of the world. Like if you're at a very specific specialist, they may only need to know certain information. But in other cases, there's a lot of like tangential or like longer term information or related information that could be necessary to be able to get through proper care and get to proper diagnoses.

[00:13:59] I'm a caregiver for a family member right now and we can't figure out what's going on with her. And it's very obvious that the specialists need to actually like get in a room and actually chat, so to speak, about what's actually going on, what the symptoms are, what we're noticing, what each of them are seeing in their own specialties. And so number one is, even though you may have three to four portals that have most of your good portion of your information, it still doesn't mean that's what the healthcare system sees as whoever you're talking to.

[00:14:28] The second piece of it is we have, it's 2026, we have more information about our health in our hands than ever before. And yeah, I talked to a couple of doctors that say, we want patients to be heard, but that information is overwhelming and sometimes it's almost unnet, like there's nothing in there that we even need to look at. So there's almost like there's all of this wearable information you have about your heart rate, your sleep, like you're tracking your hormones and you're noticing something's off.

[00:14:54] You're tracking your CO2 levels, if I'm using the right acronym offhand, like your oxygen intake and that's off or whatever it looks like, your glucose monitoring. And like, how do you then, like, they don't have all that information. So you're then taking this piece of information, your own EHR, so to speak, or your own portal of information from all these different apps and try to put them together alongside your traumatic events in life.

[00:15:19] Like, if I walk into the doctor's office and he notices my blood pressure is super high, but I just walked out of a traumatic event, like a diagnosis for my family member, well, there's like a correlation between the two and it's situational. And so there's stuff like that in like very simple terms that impact, should impact, these social determinants of health should impact how your care is actually orchestrated. So there's kind of those two main components that I see as critical.

[00:15:45] One is what the doctor actually sees, the two is what you have in your own hands about your own health and what you want out of your own health that no portal can ever have. As someone who has gone through your own health challenges and now you are facing health challenges with a family member, as a caregiver, patients and caregivers, why is it important that we listen to patients and caregivers when they're saying that they need all this information in one place?

[00:16:12] And what should patients refuse to accept starting with their next appointment? So the first question being like, why is it that it's so important to have all the information in one place as a caregiver or patient? I mean, I'll just like put the hat on of caregiver right now because we talked about my experience as a patient for a second. I'm not my family member. And so I am her voice, but I'm not her. And part of what I think to me is so critical is that you get into this world of caregiving sometimes suddenly.

[00:16:41] Like you didn't expect it, it came sooner, you don't have anything prepared. And there's this list of things that you really need to know and do, including what their wishes are as the person experiencing their own care. And having like that information alongside POA and all these other things and decision-making power and like alignment with them and all this stuff in place is like super critical. And so there's like a understanding of like the logistical processes.

[00:17:05] But from the personal health record, I downloaded, I finally got all of their health records into my story account. And I was trying to understand like what her health history was. And I didn't even know that she had an autoimmune condition diagnosed in 1992, that she has a family history of pernicious anemia that can contribute to brain fog and other things. Cholesterol was elevated. And like we're figuring out that.

[00:17:32] Like there's so many things that like clues that you're trying to like pull out and do and try to figure out what's going on with your person, the person you're taking care of. That is like next to impossible to do if you don't have that information in your hands because you're relying on what they can communicate, if they can communicate what they're feeling, if they can communicate what they're feeling. And then relying on what the doctor's then working with you on. And so I think there's two things.

[00:17:57] One is a personal health record in your hands that is their information, but not just again the clinical records, what they want out of their care, what their boundaries are, what the things are that they care about or will or won't do. So in my family member's case, we use like a feature where in my story where she just can talk to my story. So she'll say, I'm noticing I'm this or I've forgotten why and I don't know why or I've done this or I've done that.

[00:18:23] And all that like unstructured, subjective, like true expert feelings on your own body is actually really critical hints at how we then take and talk to the doctor. So I just like, I don't know how to like emphasize more on that, but like just having, I could not do, I could not get through her care and we're still struggling to get to a diagnosis.

[00:18:44] And I find myself between the family doctor who has one expertise, the specialist that we were referred to as another, we're referred to another specialist that has another, like they're starting from scratch on her history. I'm the one trying to communicate her history and what we've noticed and what I can't do that if it's just from memory on an ongoing basis when I've got all these other things going on. What should patients refuse to accept starting with their next appointment?

[00:19:08] A couple of things. One is I, so I've had a GP for, as a caregiver for my family member, that is very difficult. And I'm not saying that all doctors are this way, but there is some cases where you and the doctor just don't jive, like what you're hoping for wanting to be listened to are not there. And I do think like you need a seat at the table. You are a stakeholder, so to speak, in your own care.

[00:19:29] Like this is your life on the line. And so refusing to let a doctor say what you feel in your own body is not relevant or what that you want to bring in, make sure that they have all the necessary information and context to the table. Like demanding your voice be heard in that doctor's office in respectful ways that have them leaning into is so critical. And I also think like if you're not finding someone that's leaning in with you, go find another care specialist as best as you can.

[00:19:59] Because it really is critical nowadays. And there's so many out there that will lean in and love the fact that you're doing the work of trying to get through your own care and communicating accurately and trying to translate information to them in a succinct way and asking pointed questions that actually help them do their job too. And so I think there's an element of that. But also like do not accept, get your own records in your own hands. It's like the number one thing.

[00:20:24] Like I just like the way that it's transformed my life, the way that it's transformed how I get through the care as a caregiver, the way that it's gotten to a diagnosis on my end that I would not have gotten to otherwise. And the way that my friend in his own journey across provinces was able to like avoid disaster and care is really just critical. And I can't even think of all the ways as well that you might see insurance denials because a health record is incorrect.

[00:20:50] So like just there's so many layers to the reasons why you would want to have your whole story in your own hands. Absolutely. And how has, tell me a little bit more. Thank you so much for sharing this and sharing your journey. I know it's hard. You're going through a really hard situation. And so I'm grateful that you're willing to kind of turn that pain into purpose and help us all learn more from it. So thank you for doing that. And I kind of want to ask you like, tell me a little bit more about my story and how that fits into things and like what the process is for getting my story.

[00:21:20] Yeah. Yeah. So my story is entirely built on my own experience. So like I just, I went through my own care journey. I, they missed a diagnosis on an ultrasound a decade prior, all the things I've just told you. And the fact that I had to get my medical records in my own hands and no one had the same. I was like WTF, like the system is just not set up for it. Let's go solve for it.

[00:21:41] So my story is really a personal health record for patients, people, anyone where we will go white glove, go get all of your records for you. Do all the things that I did in my pre for my own records myself, put that all together in your own account. My story, you own your data. It is not, it's not sold. It's not used anyway. You can download, delete, share, do whatever you want. Like it's your information to use on your journey in your own hands.

[00:22:08] And from there, then you've got tools surrounding you. So if you don't want to co-use chat GPT or Claude or all these other AI tools to understand, we have an internal medically kind of backed AI component where you can talk to your medical records and ask questions. You can allow it to constantly review stuff and spot patterns. We've got the health journaling tool where you can just talk to my story and just tell things that are, you're noticing are going on with you.

[00:22:37] So we've also got a medical concierge team who are nurses, but they're just not practicing nurses. So we call them medical concierge and they will, you can kind of think of them like a health personal assistant. Like the job of being a patient is exhausting. They'll go call for second opinions, do the research on the right clinic for you. Look at wait times and places, like you name it, they'll do it. And they're amazing humans. And so it's really a, we'll get your stuff in your hands, then we'll give you tools to kind of get through care a little easier.

[00:23:07] And I can give you and for your audience a code for six months of just like, it's always free, but then there's the component of the personal health assistant that is $20 a month typically. So I'll just give you, I can give you a code to share if you want for everyone to get six months of kind of the personal health assistant at no cost. We would love that. Thank you so much, Jessica. Now to finish this conversation off right, where can our listeners find you online and MyStoria online? Yeah.

[00:23:32] So MyStoria, we're on Instagram, TikTok, Threads, LinkedIn, I can send you the handles. I'm also on LinkedIn. I talk a lot in a, I've started a newsletter on the personal health record. What are your rights with your own health information? And so if anyone wants to connect there, I'd love to and chat and even a good debate and learn from each other. So I'd love that. We also have our website, MyStoria.com.

[00:23:57] And then downloading the app as well is a way to connect with us and our nursing team and our community. That's terrific. Now, before I forget, did you happen to bring tea with you? Of course. I've been drinking it the whole time. Yay! I love it. Tell me about your mug. I am really loving the English cottage, like eclectic vibe. So when I moved, we moved away from family and friends just to start a new life after we walked away from our fertility journey.

[00:24:25] And I was like, I know this, it doesn't sound silly. Just it's like, it was like a relearning myself. So I was like, you know what? I'm going to really lean into my quirky style. And so my whole house is basically like, we're getting there, but like very like quirky wallpaper, color, English cottage vibe. So this was actually bought when I went to England in my mom's hometown in Berkshire area. And so I just carry it kind of with me. Yeah. So that's a mug.

[00:24:51] And then I'm really into spearmint tea because I learned spearmint tea is really good for cortisol or adrenals, according to what the naturopath I was working with said. So I drink like a liter of it a day. So that's what I'm on right now. That is terrific. Well, thank you so much for joining us today. We love learning from you. And I hope to have you back again soon to learn more about how you are all doing a year's time. Thank you, Grace. I really appreciate your time and just the conversation that we've had today. Thank you. And thanks to you guys for joining us too.

[00:25:21] I'm going to be back to you with Grace podcast for more interviews with great guests like today. Cheers. Like a girl media is more than a media network. It's a community. We want to meet you and amplify your voice and the voices of outstanding women innovating in health care. Interested in starting your own podcast or hosting an event near you? Connect with us online or in person. We're here to support and empower you.