Caregivers for Compromise Webinar

This transcript is from a webinar recording with Mary Daniel, Dementia Educator and Alzheimer's Caregiver and Brittany Dreier, Community Partnership Manager at PicnicHealth.

Brittany Dreier 

All right. Thank you everybody for joining. We are so excited to chat with you and introduce you to PicnicHealth and real-world data research for Alzheimer's and dementia. 

So just to give you a quick rundown of how tonight will go. We'll do some brief introductions. I'll give you an overview of what PicnicHealth is. I will actually demo the timeline for you so you can see what it looks like and then Mary will share a little bit of her story and we can open it up for questions. 

So just a quick introduction. Hi, I'm Brittany, I'm a community partnership manager here at PicnicHealth. I work with our lovely change champions like Mary, who I'm sure we are familiar with. I am also a former care partner for my mother, who had dementia. And Mary, I'm sure we all know you, but I would love it if you would just quickly introduce yourself. 

Mary Daniel

I'm happy to do that. I'm Mary Daniel. I am the founder of Caregivers for Compromise. My husband, Steve, is in a memory care center in Jacksonville, he has Alzheimer's and was diagnosed nine years ago at the age of 59. 

Brittany Dreier 

Alright. Thank you, Mary. So, what is PicnicHealth? Great question. So PicnicHealth was founded in 2014 when our CEO Noga was diagnosed with Crohn's disease. 

And when she was supposed to be advocating for herself, grappling with her new diagnosis instead, she was in the process of seeking multiple opinions and having to go through the struggle of accessing and sharing her medical records. So, she was waiting in line, she was calling her different doctors and she took a look at that and saw how frustrating it was and she knew that it needed to be fixed. 

So here at PicnicHealth, first and foremost, we believe that access to medical records is the right of every single patient.  So, when we first launched, we came out with our digital health timeline and what that looks like is the patient signs up on our secure site it takes less than 10 minutes. They enter their information, and we will take care of the rest of the work for them. 

So, we will go out, we will contact the providers and we will get the records and we will assemble them into an easy-to-read digital health timeline and when we did first launch, it was initially a paid service. But what we realized was there is already such a burden on patients as far as the cost of care goes that we did not want to contribute to that. So we tried to take a step back as a company and figure out how we could offer this service for, you know, free, essentially, and what we realized was there was really a partnership opportunity with researchers in respect to real-world data research. 

And that is how we kind of shifted as a company and we'll talk about the research portion a little bit later, but we are able to now offer this timeline for free, which we're very excited about and that is the current state of what PicnicHealth looks like. 

 So first, I just wanted to cover the timeline. I will go ahead and pull up a demo for you, but really quickly. Just wanted to, you know, pose a couple of questions. How many of you out there have to log into multiple portals to get your medical records? And how many of you are actually carrying around portions of your health history in like a binder to multiple appointments? 

It's a familiar story. My dad has a literal file folder that he just carries from appointment to appointment and we are really hoping to change that with the digital timeline. So let me go ahead and demo that for you. 

All right, so this is our digital health timeline. As you can see, it is in chronological order. And a couple of things I want to call out here. First and foremost, labs. So if you have a specific lab that is important to you, you can actually click on it. And it's going to be pulling up that lab longitudinally over time and the great thing about this is it can be through multiple providers. 

It doesn't have to be in any one particular system. So say you see your general practitioner and then you, you know, have a hospital stay. If a lab is run there, you'll be able to see how that changed over time from all of those different places. Another thing I want to call out is. 

This is searchable, so if you're a medical provider or you yourself are looking for a particular instance of something and you need it quickly, you can just go ahead and type that in. So let's say I just wanted to look up records for A-fib I could search for that and now I'm seeing just A-fib.  Another thing I wanted to call out about the timeline is we do present it in this easy-to-read digital format, but if you ever need a full picture of what the medical records are, you are able to download those as well. And you can sort by date, you can sort by visit type, you can sort by visit details medications. You can sort by the specific facility that you visited. Or your doctor.  

 And then one of the best things about PicnicHealth is you are actually able to share this digital health timeline with members of your care team. So say you have someone coming in to take over for caring for your loved one, you're able to click here. You can add their information, you can send it to them via e-mail, or provide them with a link. And then they'll have access. And then let's say their time caring for your loved one ended and you want to go ahead and revoke access, you can go ahead and do that here and you can also, share this with members of your care team. If you see a new provider, you can share the digital records with them. Heaven forbid if you end up in an emergency situation, you can share it with the emergency personnel as well. So that is a quick demo of the timeline. Which we're very excited about. 

So now I just want to share with you a quick video from Donna Marentay. She is a dementia educator and a former RN and she has some real-world examples of how specifically the timeline can function in an emergency situation. So let me go ahead and play that for you. 

[Video] Donna Marentay

And can we rule out other things? And with PicnicHealth, I'm going to just take another 30 seconds here to have all of that information in one place. For that reason and many others is priceless. Because, again, as a nurse. We get the visit notes. When they went to the eye doctor, the cardiologist, they all went in the chart and before you knew it, the chart was like this. And then we thinned the chart and the chart was still like this. 

Now, what if they had to go to the hospital? There was no way we could send all that paperwork, and even if they did, it is an emergency, operative word here, emergency. Nobody is going to take the time to go through a binder of visit notes to find in a onesie that God forbid you keep them in date order. It's probably between the podiatrist and the audiology. With PicnicHealth that ER doctor can access it, type in search A1C, boom, it's there. So because we do face that I am a big advocate for having it all in one place. 

Brittany Dreier 

All right. So there is a wonderful testimonial about the benefit of having access to the digital health timeline from a former RN and dementia educator. So now I would like to talk about the research portion, real-world data research. 

So what is real-world data research? How do we participate in it? What's the benefit of it? 

Great question. So when a patient signs up on our site or you sign up as a caregiver, you have the option to contribute your portions of your health history that has been completely de-identified to researchers. 

So what that looks like is we'll take those portions of your medical health history and we will combine it with other patients that have Alzheimer's a full picture of what Alzheimer's and dementia actually looks like in the real world. I don't know how many of you are familiar with clinical trials, but clinical trials typically only focus on one specific thing, whether that be a therapeutic or if it's like an observational study they are looking for. “How does anxiety affect dementia or Alzheimer's?” We're very excited about real-world data research because it looks at the full picture, the full story. 

Another thing about clinical trials is typically to have a limited number of participants. Some of the exclusionary criteria can be a little bit difficult, and, like the burden of actually traveling to a site is rather difficult. But with PicnicHealth, you can do it from home. It takes less than 10 minutes. And the only exclusionary criteria that we have is that you be over the age of 50, have an Alzheimer's or dementia diagnosis, and have received care in the United States within the last seven years. 

So what does this mean? I mean. More voices, more stories are being told, which is really a wonderful thing for Alzheimer's Research, another thing I just wanted to call out of what type of insights can be gleaned from mobile data research. 

I know Mary and the team at caregivers for compromise.  We are very passionate about what the effects of isolation have been on our loved ones and care facilities.  If that's documented in clinical notes and researchers can see that trend over time, it really sparks a conversation. 

So that's just one application of real-world data research that we're super excited about. We have been able to offer this timeline and this research because of our wonderful partners, so just to call out a few, our advocacy partners working with the Alzheimer's Association, Alzheimer's of Orange County and then our research partners like Roche, Stanford, et cetera. 

So how do we sign up and what does it look like? So sign up is simple and it is secure. When you first go in there you will enter your e-mail information and or your phone number and then you will verify it and then we'll ask you a few questions. So we make sure that we're getting accurate medical records, you will go ahead and sign our consent form. 

Consent is very important to us.  I'll talk about that in just a few minutes and then you will go ahead and enter your providers.  Now if you only know one provider at the time you sign up, that's perfectly fine. You're able to add them later if you need to. And there's no limit on the number of providers that you can have. 

So let's go over some of our research principles here #1. Privacy and security is of the utmost importance to us. We also completely de-identify and anonymize your data. We're also not sharing your entire medical health history. We're only sharing portions of it in combination with other patients and we only work with partners who are committed to the public good. We believe strongly in informed consent so when you sign up you do have to sign our consent forms also, we understand as caregivers for someone with cognitive decline they may not be able to consent. So we will request that you upload a power of attorney, so just throwing that out there.  

Also, you're able to withdraw any time. So say you sign up. You decide, oh, I don't want to participate in this anymore.  You can go ahead and withdraw. You will still have access to all of your medical records and then if you decide at a later date, you do want to participate you can go ahead and turn it back on. 

Again, as I stated, privacy and security are highest priority. We are HIPAA compliant. We do use military-grade encryption. It's the same encryption that banks use. We are hi-trust certified and everything has to go through a third-party Ethics review board. 

So now I just want to kind of give you a picture of what real-world data can actually do. So here is an example of one of our cohorts we worked in multiple sclerosis. And we were able to chart the entire patient journey with multiple sclerosis from preclinical all the way to clinical and we gleaned certain insights that were very exciting. You can see that here and we really are hoping to do this with Alzheimer's as well. I just wanted to provide you with a picture of kind of what that might end up looking like. 

So that is it from me and all of my talking. If you have questions, you can go ahead and drop them in the chat. But for now, I'm going to let Mary speak a little bit about her experience with PicnicHealth, why she signed up, what benefits she's seen, and then we'll go ahead and move to the QA portion. 

Mary Daniel

I think there are a number of different reasons for me in signing up.  One of them is the ease of the medical records I come from an Administrative background and medical practices and one of the ideas, I mean I was around in the old days when we did paper charts and now you know, we're into the electronic medical records and one of the reasons for that was for ease of organization and ease of access and this is really a way for that technology to get all of us, you know, on a very personal patient level. 

So I like to participate in that and see how some of that work has really come to fruit because we need access to our medical records instead of having to go to 10 different doctors and pull them all together and try to organize them and get the right information. 

It's very, very difficult for providers to know that all the prescriptions that have been written and that the patient is taking and I was a caregiver for obviously not only Steve, but Steve, but his parents as well. So both of them were in their late 80s when they died and they just did not have a real understanding of their own care what medicines were. Right or what was what were the things that they were supposed to be doing in terms of treatments, and who are they supposed to be seeing. 

So having this helps to organize that so that it makes my job as a caregiver that much easier and we could all everybody obviously understands if we can do anything to make this job easier.  It is truly appreciated. For me personally, the benefit has been the prescription drugs that was the number one thing Steve was in the hospital a couple of months ago for four days and without me having access to what his medicine was, even though he is in a memory care center, they supposedly sent the list of medications that he was on, so it was supposed to have traveled with him. They actually called an ambulance for him, so I met them at the ER, met him at the ER and the paperwork was done, so I was able to pull up the information and provide. Did it so that we had real information right there in front of us that I could tell all of the ER physicians in the ER staff and then the treating physicians as they would come in. A couple of them asked me, you know, what is the what, what's the milligrams of the prescription that he's on? [It was] Very easy for me to pull that up and have otherwise I just wouldn't have done it. I just would have had to answer with him, “I don't know and we'll have to deal with that later. We'll have to figure it out later.” And we didn't have to do that, I had access to it. I was able to provide them all the answers they needed so that we can make decisions right there on the spot. And we did end up changing a couple of his medications based on the information that I provided to them. 

The second part of it is the research, I mean. But one of the things about Alzheimer's that's so sad is that there is no cure for this and being in this journey for 9 years now. We, my goodness, we need to find a cure. So how are we going to do that? I don't know the answer to that. All I know is anything that we can do and I say we as Steve and me, anything that we can do to help, we want to do? We want to feel like there's some purpose here that there's some, at least let us get some sort of benefit to the community, to the Alzheimer's community for the struggle that he's gone through and the struggle that our family has gone through. And this gives us an opportunity to do that.  So, it's a really a win for us and that we get access to these medical records. And it's a win for the Alzheimer's community and that if maybe it can provide some answers that we didn't have before. Then we're going to end this and it certainly, Steve’s, journey will not be for naught. There will be some advantage in maybe finding a cure one day.

Brittany Dreier 

Perfect. Thanks so much for sharing. You really called out a lot of the benefits to having the PicnicHealth timeline and contributing to research, particularly with respect to, you know, having the access to the medication so that when the doctors know, ask you that, that information, you have it right there at your fingertips and some of the frustration of like, oh, I've sent the medical records, I sent all the medication lists and they actually didn't. And then that current provider has to start from scratch when they don't really know the full picture so. Thank you so much for talking to that. 

And also, you know, the opportunity to provide your voice and your story to research, I think is so impactful. So let's see what questions we have. 

Mary Daniel 

Can I start with the first question? Uhm, tell me how it works. I got an e-mail this morning that said additional records had been added to Steve file or his record his database. Tell me how that works. 

Brittany Dreier 

So that is a great question. Is it the question of whether or not we do keep things updated over time? Is that why you got that notification? So that is a great question.  With our health timeline, we do actually keep it updated for you.  So every few months or so we will go out and retrieve those new records and then they'll be added to your timeline so that you just continue to have everything.  

Mary Daniels 

That's amazing. I mean, that's really amazing because, you know, the thought was originally at that. Well, it will gather them up to this point, right? But it's not even that it's actually gathering them ongoing so that anything new that happens or any, any additional records that are added or added to this file so It's pretty cool that I got an e-mail and I actually got a text as well.  So I looked through the text and that, you know, I've had a number of those since we signed up, which is, which is really cool.  But knowing that it is continuing to be updated so it's easy for me to see and know that it's all current. 

 I don't have to worry about what am I missing going forward. 

Brittany Dreier 

That's a great, great question. Uhm, another question we received. Is it just medical records or will there be other data included? That's a great question. So it is mostly medical records, but we do actually send out surveys for patients and caregivers to fill out so that we can get additional insights.  So I just want to make sure that that is put out there. 

It looks like there was another question.  Is the timeline easy to use even if you're not familiar with technology? It is. So it's all in chronological order. We tried to break it out. So instead of just being like, you know, medical notes that are difficult to understand, that it's easy to read, it's also searchable if you need to look for a specific thing and you also have the ability to filter of course. 

Mary Daniel

Like, I like that part. I like being able to search quickly for what I am looking for saves a lot of time. I mean that that that the same with restriction, just looking for a particular prescription to see what the milligrams are that he's currently taking is super helpful. 

Brittany Dreier 

Yep, absolutely.  And another question we had was how long does it take to get your medical records That's a great question. So it does take us a little bit of time to coordinate that.  Typically you can expect to see records in your timeline within three to four weeks. So there's that. And also I did just want to say if you're having any issues with the technology, feel free to reach out to PicnicHealth.  We have a wonderful customer care team that will be able to help you out with navigating the platform or answer any questions. Any other questions before we go ahead and close it out for the evening? 

Brittany Dreier 

Looks like there's another question.  I like having my binder.  Can I use this tool to get my medical records together for me and then just add them to my binder? 

Yeah, you absolutely can do that.  So you can go ahead and print them out.  And then put it into your binder.  You can either use the easy-to-read format with the particular insights that you need.  Or if you want to, you can go ahead and print that entire medical record from your provider. 

So you do have that option there are some of us that do like our paper organized very nice and neatly, that's for sure.  So my dad is certainly one of those people.  He has like a file for literally everything, every receipt.  It's all there. 

If I no longer want to participate in research, can I stop?  That is a great question.  So one of our research principles that I kind of alluded to or spoke about earlier was this right of consent that we also believe that is the right of every patient and you are absolutely able to withdraw at any time if you need to. You will still receive access to all of your medical records. You will still have access to your whole timeline. I do want to call out that we will not be updating them while you are withdrawn, but if you do decide at a later date that you want to go ahead and re-enroll, you can go ahead and turn that back on and we will proceed with gathering additional or new medical records.  That's a great question.  Any other questions? 

Mary Daniel 

One thing we haven't mentioned and it's not something that I talk a lot about just because it's not the real, it's not why I did this or decided to do this, but that is that there is a $25 payment made to families when they do register, right. So can you mention that, talk about that? 

Brittany Dreier 

Yeah, absolutely. So since we’ve got partnership with researchers, not only are we able to offer that timeline for free for patients and caregivers, but we are able to offer compensation.  So it would be $25 when you sign up just to call out it does take a little bit for that payment to go through because we do have to, you know, receive your medical records and ensure that you do have the verifiable diagnosis, but then yes, we absolutely want to compensate you for your time and your effort contributing to research. 

Mary Daniel

That's why I say it's when for me I get the records. It's wind for research. And it's when again to put $25 in my pocket, right? You can't go wrong with that so I love you guys.  I'm really excited about sharing this with other people.  I just think there's so many advantages to it.  So I'm really excited to help spread the word and to tell everybody about our own experience so others can enjoy the advantages. 

Brittany Dreier 

We have another question.  How can I share about this with other friends or caregivers?  

I think you're specifically talking about PicnicHealth, so you can actually contact Mary.  Mary is one of our change champions. She does have an awesome link that you can choose to share with others. Or you can direct people to the site and we do have a referral program as well, which you will see in your health timeline. Any other questions? 

Alrighty, well, it has been a great evening. Thanks for all of your lovely, insightful questions. And Mary, I just want to thank you so much for being an amazing change champion and doing so much for your community as a whole and allowing us to talk about PicnicHealth. It's been a pleasure. Feel free to shoot me an e-mail or reach out to Mary if you have any questions. I will let you go for the evening. I hope you have a lovely night. 

Mary Daniel

Thank you, Brittany. 

Brittany Dreier 

Thanks, Mary.