Webinar Transcript: Allie Schmidt, Disability Dame and PicnicHealth

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Transcript

Brittany:

All right. Hello everyone. Thank you so much for joining us. We're so excited to get this started and chat with you about PicnicHealth. So kind of a brief overview of how today's going to go. We'll do some quick introductions, I'll give you an overview plus a demo of PicnicHealth and then you'll hear from Allie and we'll do a Q&A.

So hello. I'm Brittany. I'm a community partnerships manager here at PicnicHealth. I work with our fabulous Change Champions like Allie, and I'm super excited to chat with you guys today. Allie, if you want to do just a quick intro of who you are, that would be awesome.

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Allie:

Yeah. Hi everybody. Thank you for joining us today. I really appreciate it. My name is Allie Schmidt. I'm the founder of Disability Dame, a website that gives tips to moms with disabilities and chronic illnesses. And then, I also work as a consultant where I help businesses create marketing and products that are inclusive of the disability community.

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Brittany:

Perfect, awesome. Well, thanks so much Allie, and I will go ahead and move into giving everybody some background on PicnicHealth. So, who is PicnicHealth? PicnicHealth was founded in 2014, when our CEO Noga was diagnosed with Crohn's. And at the time, she was in the process of seeking opinions from multiple specialists, she just had this diagnosis. And instead of, you know, being able to focus on her care and advocating for herself, she was trying to track down medical records. So she was waiting in line. She was placing multiple phone calls, not exactly what someone wants to be doing when they're just diagnosed with something. And she was like, Hey This system is completely broken and we need to fix it and thus, PicnicHealth was born. So in 2015, the very first thing that we launched with was our digital health timeline. I will go ahead and give you a demo of that later, but very essence. It's all of your medical records in one easy place and we take care of the work for you as far as gathering them goes. And then initially when we launched, we were a paid for service and we had to take a step back as a company because we know there's already so much of a burden of costs on patients in healthcare, so we did not want to charge them for our service but we needed to figure out a way to do that. So in 2018, we realized that there was a unique opportunity for our real-world data and we can partner with researchers. And that's kind of where we sit now. So we have our  real world data research portion and we also have our health timeline and in partnering with researchers, on real world data research, we are able to offer that timeline for free and actually compensate a little bit, which we will also talk about as well.

So that's just a brief overview of how we got started. I would love to highlight our timeline first and foremost so I will actually go ahead and pull up a demo but just a quick overview. It has all of your medical records in one place. You're able to share that and you can sort by date, visit type, facility, or doctor. We are FDA approved and HIPAA compliant and you can track all your lab values over time. And if you need to, if you still want to keep your binder, you can download your original source records.

So, let me go ahead and show you what that demo looks like. All right. Hopefully you can see it. Perfect. So this is the timeline As I said, it's in chronological order. And it has everything easily viewable here. Say, you want to track your labs over time. You just click on them. And they will pop up. There you go. One important thing to know about this versus something like my chart. All the specialists and all the labs that you've had done don’t have to be in the same system. So if they're in a completely different system, we can still pull them in and aggregate them into this chart. So you can see over time how things have changed. So that's super exciting.

The other great thing about our timeline, especially for medical professionals, is they can actually search it. So if you provide this to your doctor, they only need to know one specific thing. They may not have time to look through every single record, but they can type in afib, for example, and easily pull up all the records that mentioned afib and then they can go ahead and download that source record if they need to so it also saves them time as well.

All right, and then the care team. This is where you will add your doctors. You'll also add them during sign up, but if you see a new specialist and you want to add them, absolutely no problem. So let's just say we're going to add a primary care physician. Really, all you need to input in here is the facility name and the location. You don't have to have phone numbers. You don't have to have an address. You don't even necessarily have to have your specific doctor. So I just want to call that out.

And then this is where you can share the timeline. So if you need to share the timeline with the new specialist that you're seeing, or if you want to share it with a friend or family member you're able to do so. You just click on share, you can either give them a link, you can fax it if that's what you like to do or you can email it. And then if at any time you want to revoke that you can go ahead and do so- pause access, remove them completely, whatever you would like to do. One other thing, I just want to call out here, is when you first log in, you'll be taken to our research portal. We do use medical records mainly in our research, but we also do use patient surveys. So you may see a survey pop up here. Usually, there is some compensation for those and you'll go ahead and answer questions about your patient experience.

So, that is a really quick demo of the timeline. All right, so now I would like to talk about the research portion. So, with ALS, we are doing real-world data research. We're very excited about this. In clinical trials, typically, they're studying only one specific thing. Whereas with real-world data research, we are studying what ALS looks like in the real world on the whole, not just one specific like portion of it.

So what does that look like if someone wants to sign up for this research study? That's a great question. We would take portions just portions of your health history. We would completely de-identify it. We could combine it with other ALS patients and we would share that data with researchers so that they can find insights that they can't find in clinical trials. We're not sending over your entire record. We're just building little data sets with completely de-identified information. We're very excited about it because it's very accessible. So it includes people that traditionally haven't been able to have their voice heard in clinical trials. So we're really getting that full picture and we're very excited that all these people are signing up that maybe don't sign up for traditional trials.

When you do join the research study, you get access to the timeline for free and you also get $100 for contributing to research. That is a little bit about our research study. The signup, which takes less than 10 minutes to complete, but we'll go over that in a little bit. Just call out to some of the partners that we work with. So our research partners, we work with Roche, Pfizer, Stanford, John Hopkins, etc. And then we also have a lot of advocacy partners as well. The MDA etc.

All right, so just to go over that sign up process, it does take less than 10 minutes. When you first log in you'll be prompted to enter your email address or a phone number. And then you'll have to verify that and then you'll go ahead and sign our consent forms and enter at least one provider and then BAM, you're good to go.

And some of our research principles that we hold near and dear, first and foremost protect rights and privacy, everything that we do is IRB approved and reviewed, we Anonymize data before we send anything over to researchers. So everything is completely de-identified, there is no identifying information in there. We only work with researchers that are committed to the public good and we believe strongly in informed consent. So when you sign up for the research study, you'll be opted to give your consent and then if at any point in the process you decide ‘Hey I don't want to contribute to research’ that's perfectly fine you can go ahead and withdraw that consent. You will still have access to the timeline and all of your medical records. If you decide at some point I actually do want to contribute, you can go ahead and turn it back on and we'll continue gathering records for you. Privacy and security are our highest priorities. So we are HIPAA compliant. We use military grade encryption. We are high trust certified and as I said earlier, everything must go through a third-party ethics review, so the IRB, which is the same regulatory body that governs clinical trials.

And then just to give you a quick example of the kind of the work that we have done here at PicnicHealth. So we completed a study in multiple sclerosis and we were able to map a multiple sclerosis patient's journey all the way from preclinical to a diagnosis and treatment. And we were able to pull out, you know, key insights that weren't typically found in clinical trials and give a real full picture of how MS actually looks like in the real world. We're very excited to have the opportunity to do the same thing for ALS. Alrighty, so that is enough from me. I'm gonna go ahead and turn it over to Allie and she can talk about herself and why she decided to sign up for PicnicHealth.

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Allie:

Of course, thanks Brittany. So I just wanted to take a little bit of time to give you some background information of my experience as an ALS patient and kind of just how I got here today.

So about seven years ago, I developed my first symptoms of ALS. It started in my pinky on my right hand, I was 25 years old at the time. I was working in my first corporate job and suddenly I just wasn't able to type very well anymore. And at the time I had no idea what ALS was. I'd heard of it through the ice bucket challenge but I didn't know what it actually meant. And because I was so young, I did not think it would be anything serious. I thought it was just gonna be a pinched nerve. So, it took probably a year to a year and a half before I actually started seeking out answers from doctors and if you're an ALS patient, or if you're a caregiver to any ALS, patient, then you know that there's no tests that can definitively confirm, whether you have ALS or not.

So, because of that reason, I went through a lot of misdiagnosis. I went to multiple hospitals. I sought second opinions. I really, it took a long time before I finally started to realize that it might be ALS. Because it took so much time, many of the misdiagnoses that I've received prior, I just didn't fit the criteria anymore, and it became pretty apparent that it was gonna turn into an ALS diagnosis.

So, where I'm at today, depends on the doctors that you talk to.  So if you talk to Vanderbilt, they think that I have early onset, ALS. They believe this because I only have weakness in my arms and hands. However, I have muscle twitching, spasming throughout my entire body, and I'm also hyperreflexic at the knees. So that's why they think it is early onset ALS, which will eventually turn into full blown ALS.

However, if you talk to the Mayo Clinic, they believe that I might have a rare form of ALS called brachio, amyotrophic dysplasia. where the weakness will stay confined to my arms and hands. So basically, as of today, my arms and hands are completely paralyzed but I have not experienced it in  any other parts of my body.  So, I hope that just kind of gives you an idea of where I'm currently at.

I know that my experience has been much different than the typical ALS patient and I'm very aware of that and I try to be very sensitive when I'm explaining my details because I know that I've been very lucky and fortunate to be in a position where mine has fortunately just progressed a lot slower than a lot of other patients. Um but for that same reason, I also feel so compelled because I've been given this extra time and opportunity. I feel very compelled to make sure that I do everything I can to advance research. So basically the main reason that I signed up for PicnicHealth was simple. It was because I wanted to find a cure for ALS in my lifetime. And it doesn't even necessarily have to be during my lifetime that I contribute to science and research. But I just really never want anyone else to have to experience what this is like. And even if that means for people after me that I don't even know, I just really don't want anyone else to ever have to experience this.

So if it's something as simple as just signing a form and donating my medical records, I'm definitely gonna do it. I sincerely believe that because ALS is so complex and such a heterogeneous type of disease that we really quote, unquote need all hands on deck in order to accomplish finding a cure because it's obviously just very complex and we need to find research in every different avenue and every different way possible.

So a little bit more about me is that I work fairly closely with our local hospital. Last year,  I organized a fundraiser that raised $44,000 to help build a state of the art ALS  research facility at Vanderbilt but even through government funding, private donations, and the ALS  Ice Bucket challenge, you still don't have an effective treatment option available on the market. And because of that, it's just another reason that if, if donating my records and all it takes is about, I mean, under 10 minutes. It didn't honestly didn't take me 10  minutes but if it's just a few minutes and it’s something so easy that I can do from a click of a button at home, it’s just a no brainer for me. I'm absolutely gonna do it. So that was the main reason that I signed up for PicnicHealth.

Secondly, I worked with the organization for probably the last six to nine months and I've had a great experience. Almost all of the people that I have worked with, they have felt compelled to tell me their own experience of how they either have a rare disease or they have a loved one in their life who has experienced a rare disease. So because of that, I feel like they're very sincere and they're very compassionate and they truly feel connected to the mission that PicnicHealth is trying to accomplish. And so, I know that as an ALS patient, you can have a lot of people and a lot of organizations vying for your attention. But I just really feel that PicnicHealth does it in a sincere way.

Not to mention,there are a lot of benefits from signing up and so, just to get into some of those benefits. This is all coming from my direct experience of being a patient living with ALS, and using, and signing up for PicnicHealth. So, I think the first biggest benefit is that when I went to previously, previous to PicnicHealth, the way that I would go and collect my medical records was that I would have to go online enough to print out a form. So I would have to find a printer, print it out and then from there I would have to fill out the form using a pencil.  And I can't write anymore and I haven't been able to write for a very long time.  So that just meant it was going to take a while longer because I had to wait for a  caregiver to get home or my husband so he could fill out the form for me.

The other way I had to retrieve the medical records was either faxing it or going to the medical records office in person. Because of how weak my arms were at the time, it was very difficult to fax anything. And so at that time, I was actually still able to drive, but it was actually easier for me to just drive. But that meant the records department closed at 4:30 and that meant we had to leave work early to go driving during rush hour  traffic, park, walk across campus, and find the records department. It was just such an arduous way to retrieve my medical records. That it's actually wild that there hasn't been something like this before where you are able to easily access your medical records.

It's been a long time coming that I feel like we actually need this. And so from my experience, the last time that I went to Vanderbilt to go get my medical records the receptionist at the office was actually not even going to allow me to have my medical records because I was not able to physically sign for them. I explained that my husband has my power of attorney but he wasn't with me. Clearly on the medical records, it states why I have a disability and it just grew really frustrating to have to go through all these obstacles in order to have something that is mine. Um so that was a little bit of that experience. And then even going further into the journey is that the reason I was requesting them was because I was going to get a second opinion at Mayo Clinic. And when I showed up at Mayo Clinic, I even called Vanderbilt Multiple Times to make sure that they had sent the records to make it easy when I went to the new clinic. During the very first appointment, the doctor walked in and said, where are your records? We haven't received anything. So rather than me, getting to spend time with the doctor going over all possible scenarios of what this could possibly be. I was sitting there having to regurgitate a timeline of which I could not remember. He wanted to know blood results, he wanted to know a lot of the examinations, what the results were. Of course, I wasn't gonna remember any of that. So one, I mean, the main reason that I like using PicnicHealth is just because it's so much easier to get something that I believe is rightfully mine.

Secondly, another benefit and this actually happened to me a couple of weeks ago. Is that, of course, all of us, if you have ALS, or if you have a loved one that has ALS, none of us understand how we've gotten in this position, unless you have familial, but in the case of having a sporadic disease, um, we don't know why this is happening to us, so I can assume that a lot of you have done your own research and try to find patterns in that research and compare it to your medical notes.

Well, previously I have done this so many times throughout the years and previous to PicnicHealth, I was having to store all of my medical records inside of a binder, leave them in my office, and then, but I'm never gonna go through those. It's very obvious, my arms and hands are paralysis. It's very difficult for me to flip pages, or do anything like that. It's much easier for me to use my phone. And so I really feel like me not being able to access the medical records was inhibiting me from getting the care that I needed just because it had turned into such a laborious process that I just wasn't even willing to get through it with it anymore.

Oh also, if you have ALS, you know that a lot of times you're gonna go to these doctors and they're gonna end up saying that there's nothing they can do for you so it just became too burdensome for me to  keep trying. And so something that happened to me. This was actually just a couple weeks ago. I have recently become dizzy, very easily and it doesn't matter how much you eat throughout the day. It doesn't matter what time of day it is., I'm just always feeling dizzy and so I actually use PicnicHealth to look at my blood results from a couple of years ago and found that I was deficient in a nutrient that could signal anemia. And so I haven't reached out to my doctors but I'm actually gonna set up an appointment soon for  them to look into it. And it's just another example of the power that you can take back once you actually are in control of your medical records and have them in an easy to read format.

And then, lastly, another huge benefit is the chronological timeline. So we know that going to a doctor's office, I mean, you're lucky, you're absolutely lucky if you get 20 minutes with them. That's like not even normal. Um so to spend that time having to go over having to remember all these different dates in your head. It's so hard. I've been living with this for seven years. It's really hard for me to stay off the top of my head, when I had the surgery, when I received this result. And so a lot of that time that could be better spent talking about other things is spent going over a timeline just because they don't have a way to look at it in an easily digestible way, where as PicnicHealth provides that where you could just either hand them your phone or they can access it before you come into the office. But it's just an easier way for them to understand, kind of the complete picture of what's going on with your health.

And then I also think that Um, it's just easy. I think it makes it probably easier to compare timelines to one another. I know that me and my friends. I have, you know, a lot of friends that have ALS and we're constantly looking at each other's medical records and trying to compare and trying to see if we can find any kind of similarities. So I just think it's an easy way to digest that information. And so those are the main benefits for me. It was no brainer to sign up for PicnicHealth one because I'm getting to donate my records to research which could hopefully result in a cure for ALS. I also receive a bunch of benefits from it and then you get a hundred dollars for signing up if you have an ALS diagnosis. And so, there's so many benefits and I've worked long enough with this organization to feel comfortable recommending them to people. So for me, I really do recommend reaching out to them. I think it'll save you a lot of time and get something, that hundred dollars you want to spend it on. And that's it for me.

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Brittany:

Well, thank you so much Allie for sharing. Obviously, we love your passion and all that you do here at PicnicHealth, how you advocate for yourself and also for others. It's incredible and, you know, in your story you really hit on so many things that are so important to us like the difficulties of sharing medical records between providers and how frustrating it is to walk into an appointment, thinking that you have all of your ducks in a row. And then to be told we have nothing and you're starting from scratch and trying to recall things from memory. That's so frustrating.

Then also just really, really interesting how you were able to identify something in your labs that could potentially be contributing to your dizziness. Just helps you be a better advocate. Absolutely. And we are definitely a patient-centric company. Most of my colleagues here, as Allie said, we either have rare diseases ourselves or someone in our family is directly affected. So we're very passionate about research and passionate about what we do here.

So, I’m going to go ahead and open it up for a quick Q&A. I'm also going to throw my information up on the screen just in case anybody wants to contact me. So, you can go ahead and put your questions in the chat. Okay, here is my information.

All right, so it looks like we do have a question. What information do I need to have about my doctors to add them? That's a great question. So, just going back to what I said earlier Really all you need to have is their location, so city and state and the name of the facility and that should get you going. If we do need any additional information, we will actually reach out to you from the app. So you will get either a text or an email notification that we're requesting more information and then you can just input it so we try to make it as easy as possible.

Next question, How long does it take to get my medical records? That's a great question. It can take anywhere from two to four weeks. So just keep that in mind. We have to get your medical records and then upload them into our system.

Is this just for patients or is it for caregivers as well? That's another great question. Um, So as a caregiver, you are able to sign up on behalf of your loved one, you will have to upload a power of attorney document just to show that you're able to do so and that you can provide consent for them. Or if they can still consent, they can do that themselves. But you're absolutely able to manage your loved ones records. That's why we're here.

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Allie:

Hey Brittany. Can we go back and elaborate on one of the questions or one of the answers?

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Brittany:

Yeah.

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Allie:

This is a personal question, is that depending on the amount of time that it takes to retrieve your records. Is that dependent on the hospital's responsibilities or their communication styles or is it dependent on how many hospitals you've seen?

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Brittany:

That's a great question. So it is dependent upon the specific facility and how quickly they get those medical records to us. So, to kind of answer your question, I think what you were getting at is Do we wait until we can release all of the medical records to you? Or do? Are we able to release them as we get them?

We are able to release them as we get them. So, if we get one facility, we get them uploaded into our system. You'll have access to that. And then, as more facilities, come in, then you'll you'll start to see a more robust timeline.

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Allie:

Yeah, that was my experience when I used it. I had Mayo Clinic. All of my records from them came in very quickly like within a week or two weeks, Vanderbilt took some time and so and it's all it's funny because it's also very representative of my experiences with the hospitals.

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Brittany:

That's funny. Yeah, yeah that's absolutely a great call out and a great question. Um, last question it looks like is, Do you continue to update my records? So the answer is Yes. As long as you are enrolled in the real world data research for ALS, we will continue to update your records usually about once every two to three months, we'll go out and retrieve new records, sometimes faster than that. And if we notice that you haven't seen a provider in a while, we may reach out to you just to say, Hey is everything, okay? Have you seen anybody new so that we make sure we can stay on top of it.

All right, any other questions? All right. Well, it doesn't look like it. Allie, thank you so much for your time and sharing your amazing story. And thanks everybody so much for attending. Thank you.