Demystifying the Use of Health Data for Research

Evelyn Pyper
Evelyn Pyper

Evelyn Pyper of Picnic Health talks about using health data for research.

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Podcast Transcript

April 20, 2023
Note: This transcript was computer generated and might contain errors.

Evelyn Pyper:  Yeah yeah. Happy too So Evelyn and I and I currently work as evidence strategy lead at Picnic Health and Yeah what evidence strategy really is thinking about how we as a health technology in real world Data Company can really meet the needs of our research partners who are using real world data to generate evidence. And so and yeah with that happy to dive in a little bit more about what picnic health is or we can cover that in a second. But yeah. And when I'm not wearing that had I feel very lucky to get to wear a couple different hops when I in my free time. Wherever that exists I'm doing part-time PhD where I get to focus, go really deep, dive into some of the areas, I'm excited about in the real world data space and around, digital health and wearable technology, but all still around real world data and then. Yeah. And outside of that I mean very really excited to be

Evelyn Pyper:  This podcast because I just think all of us, whether we're patients or caregivers or no patients in care givers like can really see the importance of having these conversations. And so I feel like that's also as much as it's not a work hat, it's like a hat. I try and always or a lens. I always try and think. Yeah. Think about these topics through

Katie Wilkinson: Yeah. That's awesome. We're so happy to have you on the podcast.

Evelyn Pyper:  things.

Katie Wilkinson: I didn't realize you're working on your PhD. That's exciting Also.

Evelyn Pyper:  Yeah.

Katie Wilkinson: You've mentioned real world data a couple times. I would love to dig into what that means. But firstly if you can give us like a flyover of what picnic health does and is to sort of frame up the conversation.

Evelyn Pyper: Yeah.

What is Picnic Health?

Evelyn Pyper:  Yeah, happy too. Yeah it's like almost um you can't really describe one without the other so it makes sense to tackle both together Picnic health. And brief is a company that was really founded because our CEO and co-founder herself experienced illness a chronic illness and it really it's only until you're in that position. I think people realize just how challenging it is to not just feel like a sense of ownership and control over your own journey, but just know, like Where is my information and like how do I find it and bring it all together in a way so that it helps me navigate the system better. And so, picnic health like Earth out of that recognition of that challenge and how it's not wasn't just facing her. It was facing many other patients and so, pick me up again, is this platform where we essentially go out and get patience signed on to this platform where we can collect all their medical records on their behalf with their consent, put it back into like a convenient.

Evelyn Pyper:  Digitally enabled platform for them to use. And so they have this timeline of care. You know, what visits they've had, you know, prescriptions they've received as well as a platform to monitor forward looking in time so prospectively, an opportunity to measure things like, patient report outcomes that I'm sure we'll get into. So, with that just, you know, being a originally kind of rare disease-focused company because there's just so much need there to collect, to bring people's patient data together, because it exists across so many providers, but we've really grown into not, just a patient platform, but also a research platform. Lots of patients are really interested in participating in research but just don't know how. And of course, lots of researchers and companies are, you know, really making do with what they have in terms of real world data that's available and so to be able to bring those interested parties together in a way that

Evelyn Pyper:  The patient themselves has control over that switch of like how their data gets to be used. And when is really exciting and kind of, and what really struck struck me when I came across Picnic Health and why I wanted to join the company.

Katie Wilkinson: Yeah, thanks. That's a great flyover. And I'm glad you sort of touched on like patients, having control over being able to switch on what their data is used for. Because I think that's probably a big question and I think we'll get into some of the, like privacy concerns around how health data is you Excuse me.

Evelyn Pyper:  Yeah.

What are some of the ways data is used for health research?

Katie Wilkinson: But I guess, before we get there, I'm hoping at a high level, you can talk about, you know, how what are some of the different ways that data is used for health research?

Evelyn Pyper: Yeah, yeah. Happy to like at the big, like the Highest level Like we can think about health research in two general buckets. We have the clinical trials like the interventional space where you know, the way in which and how much and what conditions patients receive medication or other therapies is like heavily controlled and it's in it's in a


Evelyn Pyper:  Often patients are randomized to one treatment or another and not as of course, a big important space and, you know, patients themselves, listening to this podcast may have been part of trials themselves and can understand what that looks like. And then there's kind of everything else outside of trials. So just all of us as we go about our lives, receiving care, talking to providers having appointments. All of that is also healthcare data and we can think about broadly that is like non-interventional research or officer or observation not interventional or observational research. Because researchers are not controlling all of these factors in the environment, there's simply observing what's happening? And trying to understand and answer questions that they have from that information. And so real world data and evidence which I'm sure we'll get into more, is falls more so into that ladder bucket. So it's outside of traditional clinical trials.

The difference between real-world data and real world evidence

Katie Wilkinson: Yeah, thanks and I think to you just mentioned it but to break this down for people listening, can you talk about the difference between real-world data and real world evidence and what those two words mean?

Evelyn Pyper: Yeah. Happy too. Like, so real world data we can think of it as basically, anything outside, the context of a traditional randomized, controlled trial. And so because rural world data, the definition has continued to evolve as there's more. More ways to collect data, you know, digitally from health records, you know, real world data will include things like registries lab data, test results, even things like social media data, really like the ways that we talk and and discuss Our health are really endless, but then we're real world evidence. You know, the difference between there is we're taking the data.

Evelyn Pyper:  There's a defined research question. We have about that information and then we're doing some sort of advanced analytics or We're answering that question through some methods and the output of that is then the real world events. So they're often used interchangeably but the subtle nuance there is the data is kind of like the source what we're talking about and what we're sourcing at the outset and the real world evidence is kind of, then how that's being applied to different use cases. And I think that, yeah, the real world evidence space is really kind of In the research world and in the world of industry is really exploded over the last, you know, five to ten years. As there's more recognition that we can't just rely on these controlled environments and trial settings to inform us. What a patient's life is like? There's so many things that are uncontrollable factor that impact, whether someone's gonna do well. In on a treatment or not do well.

What are some of the challenges that exist with collecting and analyzing real world data for health research?

Katie Wilkinson: Yeah, that's super helpful and makes a ton of sense. I mean, it's exciting to see this kind of work being done. And I'm wondering, you know what are some of the challenges that exist with collecting and analyzing REAL-WORLDS data for health research?

Evelyn Pyper: Yeah like just like randomized controlled trials have their own challenges. So does any type of real-world data approach? We can kind of think like, no single source of data is perfect and the more that we can bring them together, like there's greater value. For patients and for research that we can get from the data but the core challenges that exist for patients and for researchers, broadly when we think about real world data space is data access. A lot of real-world data is generated through the normal course of care provision. Like, we have, you know, you think about claims data. So I data point generated from a prescription being filled

Evelyn Pyper:  Or a visit. Those are all data that's helps make the health system work. Like their gears in our healthcare system. They're not necessarily designed for researchers or patients to access them. They're kind of part of this system and this machine so it access can be challenging In some cases often silos exist. So whether that's

Evelyn Pyper:  Silos across geographies Like you move across the country and now you have a different healthcare system. You're kind of existing within that can also just be in terms of types of providers and those systems, stop talking to each other and challenges with completeness, that come with that. If we have all these silence systems and they're not talking to each other. If one provider, or one researcher looks at just one of those data sources. They're not necessarily going to get the whole picture of your health experience and other common challenges. Things like data quality. These are much more on the research side challenges things like confounding. So that's, you know, are the things we're seeing a result of what we think we're measuring or the result of something else. So, you know, a factor of like where people live, for instance, versus the care, they're receiving


Evelyn Pyper:  And then also within specific types of real world data. We might have missing information or uncoded information. So patients might find that like their disease is so rare or newly identified some type of an illness. There's not actually it diagnosis code that exists right now in this in the systems that we have. And so it's can be challenging to actually find that sort of information buried within a record. And then, finally, and kind of an area that I think ties nicely to the core of what picnic health does. Is that within a health record? We have all these structured components we have, you know, diagnosis, we have dates. We have things that you can think of them as kind of that information is either there or it's not type of fields. And then we have all of the unstructured information. So that's like if you or I were in a healthcare visit and this dialogue is written down in clinicians notes. There's so much rich.

Evelyn Pyper:  In there that can tell you a lot about what's going on with the patient and unfortunately many sources of data, don't tap into that unstructured text. It's challenging, you know, it's bird. It's a ton of work to go through. And so that's kind of a core part of what picnic health does. Is that we leverage Clinical instructors, as well as machine learning technology for efficiencies, to be able to look at all that unstructured, text and say, like What are we? What are we able to capture about those persons care journey, whether it's symptoms. They're experiencing outcomes, things like that. And so, yeah, it really, really feels a gap that I think exists in the real world data space today.

How to structure unstructured health data

Katie Wilkinson: Yeah, that's super interesting. This question might be Well I don't think it's made because I don't know, but I don't know what the actual question is. But all of this like unstructured data that you're using humans and machine learning to look at, Is there a way to structure that like how do you look at it? Then sort of consistently as you gather more and more data.

Evelyn Pyper:  Yeah, that's kind of like I think of it as like the the powerhouse behind Picnic health is all of these brilliant. Machine learning engineers data scientists. Clinical abstractors that together have created these systems that Well, we're not the stage of like technology where we want to rely on full automation. It's, you know, series of complex Rules that essentially say like If we see these mentions of these words in combination and in these contexts and it's like layers of almost, you can think of search rules. We can get with like, really high level accuracy and efficiency to these clinical concepts that we really want to get at. So rather than it taking, you know, three years to figure out. If this group of 100 patients, what we're seeing in terms of a particular outcome, it creates both efficiency and just find stuff that we wouldn't have seen before. So,

Evelyn Pyper:  A good example of The nuance to it, and Why It's Hard to, You know, describe in a sentence, is like, we think about a patient coming in and talking about a drug that they, their friend or colleague is on. We wouldn't want a system where like it picks up that keyword of a treatment and says, Oh, that patient is on that treatment. It's simply like in conversation, it's brought up. So it exists in the record and so it's really teasing apart. All the nuance of like, Did this symptom or outcome happen or is it being talked about and or is there a similar word that's being drawn from it? And so, all of that nuance can really only happen when you have, like, the best of machine learning and the best of people thinking about it and we're as opposed to relying just on one or just on the other because both have their their flaws.

Other benefits to using real world data for health research

Katie Wilkinson: Yeah. Thanks. That's helpful and that's super interesting. What what you guys are doing at picnic and You have talked about some of the challenges of using this kind of collecting this kind of data. You also talked about, you know, the benefits of real world data. As opposed to like a controlled lab environment or something. Is there anything else like any other benefits to using real world data for health research?

Evelyn Pyper: You yeah definitely  like one of the concepts people might have heard before or maybe or may not, but certainly it's used in like the research world. A lot is like this efficacy, effectiveness gap and so think of efficacy is like, does the treatment work in a highly controlled setting like a trial and effectiveness, we can think of more as does the treatment work in the real world. And so, the gap that exists is we want to make sure that there's not a gap between what we're able to see in a controlled setting and the real world. And the only way to really unpack that and see if it exists is to leverage real world data. And so, We think about, you know, diverse representation and trials, for instance. Like we know that unfortunately clinical trials, they're going to, you know,


Evelyn Pyper:  Fairly largely and systematically underrepresent, certain groups whether it's based on age, a******, ethnicity race. Like there's a number of factors that we just know. Unfortunately, there's barriers to participating in clinical trials, and so to be able to look more passively at what's happening in the real world creates more representative of the US population. Type research, The results of that research can then be more generalizable and used by clinicians to make decisions. And and really just consider like non-ideal conditions that many people live in. We're all of the social determinants of health. So socioeconomic status and geography and remote and rural versus urban like all of these things impact, our care. And so the more that we're able to leverage data and looking at real environments, the better, I think the better research that we're able to to do and honestly it without

Evelyn Pyper:  I think patients and caregivers cells can't really see themselves in the research. That is being done in trials alone.

@joingivers Evelyn Pyper from @picnichealth breaks down how real world data (RWD) is revolutionizing patient care and empowering caregivers. Real world data refers to data that is collected from real-world sources such as electronic health records, claims and billing data, and patient-generated data outside of clinical trials. More on the Cost of Caring podcast. 🏥👨‍⚕️ #RealWorldData #PatientCare #Empowerment #HealthTech ♬ original sound - Givers • Caregiver Support

Patient-centric vs. patient-mediated vs. patient-generated

Katie Wilkinson: Yeah, thanks, that's helpful. And sorry. I'm still getting over this this frog. Um, I've seen data described as like patient-centric patient mediated or patient generated. Can you talk about the what those words mean and the difference between each of these types of data?

Evelyn Pyper:  Yeah, puppy too. And patient-centric probably the one we hear most often like the name suggests

Evelyn Pyper:  It's about all the various meaningful ways we can put patients at the center of their care or, or their research or their health data. And unfortunately, it's a really overused term and so it can be really confusing, not just for any patient anywhere, but also for folks, navigating this research environment and and unfortunately, the more word is used, the more can be watered down. And so sometimes it's used to just describe anything that might indirectly, you know, arms, length, touch a patient, but we try to be quite specific when we use it or at picnic health, or talking about like end-to-end, very purposeful practices that involve the patient. And so I can kind of in order of how they happen with our platform, kind of walk through what that looks like for in terms of patience. Interesting. So,

Evelyn Pyper:  We can think about patient-centric engagement. So like really having a targeted, not one size, fits all approach to like engaging patients in their communities. When we want them to be aware of a platform like a picnic health or givers and really, like targeting that engagement to people themselves. We can talk about like patient-centric sign up. So making it really easy for people to sign up for popcorn. Not creating unnecessary burden and forms and being really transparent about what people are signing up to. we think about, like,

Evelyn Pyper:  Benefit to patients is also patient-centric so providing not just taking anything from them in terms of time or information but being really purposeful about that data or these benefits of a picnic platform, being provided back to the patients themselves, as well as we think about, like collection of things like patient, reported outcomes. We want to really Like robust, regular data collection, where we might be asking a question, like a survey question to a patient with like, is this creating unnecessary additional burden? Like Do we need to ask this question in a survey monthly or can it be? You know, annually, things like that are just like all thought processes around patient's interest that we keep in mind and The difference between they're all related, these terms you mentioned but patient mediated a patient. Generated means slightly different, and more specific things than patient-centric. So patient mediated. We're talking about

Evelyn Pyper:  And I'll get picnic health as example that we get consent directly from patients to then go out and gather their data difference from that. And most other types of research is that people's de-identified health need of just exist in these systems and researchers and authorize and just institutions

Evelyn Pyper:  You know, for good reason to improve care and everything are able to access that data and aggregate way. But we're explicitly taking the approach of like who's the center of all of these points of care who can tell us where they've been, It's the patient. We're gonna start from there from square one, and they're gonna kind of be that. Like you said at the beginning, like that switch, that mediator to whether this data can be collected or not and then the, you know, the last point. So around patient generated data, that's when we use that, we're more talking about Technically all of the state is generated from patients somewhere, but like directly patient, generated would be these things like electronic survey. So these patient reported outcomes whether that's on their device or computer or in person like patients are the ones kind of generating that information. It's not from the clinician recording. It, it's not from a research, your recording it, from some observation. It's generated by patients themselves and so all of those. Yeah. All of our favorite, our favorite terms, but it is, it's so


Evelyn Pyper:  Useful to be able to key the part. What they mean, if you're a patient and her caregiver and you're deciding what, what app to sign up for, what platform to sign up for, it's a really know what these what these words mean.

How picnic is empowering patients to share their health data in a safe way

Katie Wilkinson: Yeah, I think this education is super helpful and I think you know you've talked about it a couple times but there's I think there's mistrust in our medical system like largely speaking and there's a hesitancy to share your information. And I'm excited about how picnic is like empowering patients to share their health data in a safe way. I'm hoping you can talk a little bit more about, like, How can patients know or…

Evelyn Pyper: so,

Katie Wilkinson: caregivers of patients know that their health that is gonna be used in a responsible way. And what kind of processes are, you know, in place to ensure privacy and protection

Evelyn Pyper:  Yeah, absolutely. And like, I mean, I think one of the most I should start off by saying that like all of those fears and things are founded. Fears, right? Like I think it's really easy for any of us like working in an industry. Receipt all the protections we see behind the curtain to say. There's nothing to, you know, there's never nothing to worry about but I think the reality is like it's it's founded and I think all of us like have had moments whether or not. We're talking about our healthier financial day where we go. Oh, I didn't know that folks had access to that whether it's just like the marketing that we receive when we're talking, you know, when we're searching something on Google. So it's very found and concerns. And but I think what's great is that we're at this stage now,

Evelyn Pyper:  In terms of privacy protections but they're really like, there's not an excuse for for not protecting that information. We have like in in the US, There is laws that exist like HIPAA. So that's the Health Information Portability and Accountability Act which are explicitly regulate how these protected health information need to be protected to ensure privacy. So we have a strong baseline of like in our laws. This information is protected but of course, within that there's then spectrums of what that protection looks like. And so

Evelyn Pyper:  We think about the work that we do health data, of course, like financial data is like very, very sensitive. There can be information, that's not just. You wouldn't want someone to know but can identify you as a person, identifiable health, identifiers, folks might have heard and so that can be something as obvious as like your name and your health record to you know, your address to Social Security number and all the like, you know, we wouldn't want anyone to have those pieces of info and they're looking at our data, down to all of the information that is on its own. Maybe not gonna identify you. But in combination, you wouldn't want someone having a combination of, you know, the town you live in and your diagnosis and, you know, your email address like all of these things together, identifiable. And so the approach that needs to be taken with help information

Evelyn Pyper:  and sensitive information like health status healthcare, there's like additional protections around medical data as there should be and so For if I think about what picnic health does, it's like a really comprehensive approach to privacy. And so if we think about identifiability we need to remove those really highly identifiable pieces of information before anything. But that's going to be used for research, we also need to then kind of pressure test our own system of de-identifying the identification by doing a re-identification of risk assessment. So basically pressure test our own system to see after we've removed all of these kind of pieces of data that make us the most nervous. How do we then make sure that no combination of the remaining data is going to identify a person and so let's see layers of kind of de-identifying and pressure testing that create this really

Evelyn Pyper:  You know, protected private set of data. And and at the core that is principles of like for research, we don't we shouldn't be ever sharing anything that people don't need to use Ish. If a question is about, does this treatment have this, these side effects and a patient group, there's so many people of information that simply don't need to be shared. And so hot taking that really like what's necessary for for research versus what odds potential risk for a patient is is really important. But with all of that, I think because picnic health is a platform that not just service researchers at first and foremost serves patients, of course. Identifiable information is hugely useful for Patients themselves to have their own records and make sure that what they're seeing is their information and if they want.


Evelyn Pyper:  For their providers. To also know that this is the information that they're bringing to them, that maybe 10 years ago, they had this diagnosis or this visit and that's theirs. And so being able to Bring together individual patient information but then we're working at a collection of patients. Take a very different approach and like and be really systematic about how we de-identify and protect that information. I think it's really a key part of anyone working in this space, what they're doing and patients, I feel like should always be Feel patients and caregivers should always be empowered to like ask questions of these systems because the answer should be there. And if they're not there for any system, I think that's also can inform. Someone's got feeling about whether the right privacy protections are in place and whether companies are adhering to the right rules

How to know your health data is safe on a platform

Katie Wilkinson: Yeah. I mean you led me right into my next question which is like, how can people feel empowered to control their own health data and what should they be looking for? I guess, you know to your point. If in this scenario what should be looking for to know that their data is safe.

Evelyn Pyper: Yeah, I think. Really important is like, are they getting the opportunity to consent to things and is that consent really clear? And again, like if it's not clear, there should be a channel with which they can ask questions, and so being able to be, like, I'm consenting and I know that my information will be used for. Let's say X research project, but it's not going to be shared with others, third-party groups. And, and having that distinction clear, I think is really important. I think it can be really helpful to talk to other patients or caregivers who have used a platform before. So, oftentimes like, we have kind of changed champions. So folks that have for, you know, had experience with our platform who have a particular condition and can kind of speak to their experience using it. And so it's I feel like it's useful to engage with those groups because there's always going to be greater trust there then Than elsewhere.

Evelyn Pyper:  And I think, I guess when I think will empowerment OVERHEALTH data, I always think about and I'm making a lot of like, comparisons the financial comparisons, like givers platform. But I always would hear growing up, you know, make your like make your money work for you. You got to make you know you got to make, you got to make it work for. You can't just have. You can't just sit there and I always thought it was interesting that we don't expect as much out of our health data. We we do just it exists out there in the world and we're not really taught to like take hold of it and get the most you can out of it. And to this day, I think there's pieces of information. I don't know about about my own health, right? Because it's just somewhere and so I think, Just being aware of of what.

Evelyn Pyper:  Is in place that enables you to feel ownership like Legally. This data is yours and and knowing that it can benefit you in the day-to-day, but it can also benefit you in terms of If you feel like, giving back to the community and being a part of research, it's all within your control. And so just being folks to be aware of that choice, I think can be quite empowering. And in the same goes for care givers like I think there's just often it's not made aware to people often that they can be part of this and really like champion their own health data and use it how they choose. Yeah.

In what ways does participating in health research benefit patients or caregivers individually?

Katie Wilkinson: Yeah, I think I mean you just touched on a big problem. I think a lot of people don't know Don't know this. I think the whole system the whole healthcare system is like overwhelming and confusing and you go to one doctor and you go to the next doctor and all your information is just out there. You don't know what's being done with it. We also don't know you have control over it. So I think what you've just said is like really important for people to hear. And then I guess sort of the follow up, question is like We're talking about people sharing their health data for research and that benefits like the you know, the greater good. But also in what ways does participating in health research benefit patients or care givers individually?

Evelyn Pyper:  yeah, I think I mean whether you're a patient or a caregiver I think like thinking of really like Each of our own experiences trying to track down something and like how like not just painful and and time-consuming that can be but like really how it can get in the way of your care journey. If, you know, you're missing a key piece of information about something is as simple as like, what medications you're allergic to what, your blood type is when was that last visit I had and did I do that last test? And it's even stuff as simple as that for non complex conditions. And so you can only imagine just like The layers of that. If you do have something that's chronic or complex and you're seeing a lot of providers, I can only imagine how much that is amplified. And so,


Evelyn Pyper:  I think I record like to make your life easier like these your data can really make your life easier and can support the care that you're being provided today. And I think the same goes for care givers like I think we really and health research, I think has come a long way but still has a long way to go and just recognizing the value that comes from not just serving patients or collecting patient reported outcomes but collecting caregiver reported outcomes because they're there seeing so much that the healthcare system doesn't see or the provider doesn't see and so just to be able both for own day to day use, but recognizing that if you scale that amongst hundreds or thousands of patients, we're actually going to be able to better answer questions and those like those research questions are then translated into policy and practice and like the scale of it is huge if we if we can trust the data that we're getting and that really starts from

Evelyn Pyper:  Pay I believe with patients and care givers, and trusting the data that they provide.

Katie Wilkinson: Yeah. Can you talk a little bit more about picnic health and just like how this data collection happens like if I want to start with picnic health and get all of my information in one place, like what's the what is this like? What's this process like

Evelyn Pyper:  Yeah, so it's I'm pretty easy to go on to our website online on your device and sign up. It's like a, you know, a five minute sign up, which basically allows you to indicate also your, your name information, and you can identify to kind of get the process going.

Evelyn Pyper:  Providers care sites that you've been to. And so, with those initial, I'd like to sign up, I'd like to consent being on this platform. You can, then point, I think a picnic health as kind of like, has the As your support to, like, going out and doing all the lifting of gathering that information. It's useful to have a good place to start. So it could be recent providers anything that any like recent carry, you've received, and then we can go out and start kind of to build that timeline of care. And I will say It can be hard for for all of us, especially too if you see a lot of providers to remember all of that. So we don't Thankfully, we don't need to rely on patients, providing a full history of where they've been seeing to gather that data because the great thing about, you know, be unstruct your text and instructor text and health records is that it provides a little bit of a roadmap for us to then be like, Oh, we see a mention here, that we were all so seeing or got a test elsewhere and so you can think of it as connecting the dots from that, initial source information,

Evelyn Pyper:  And for some, for some patients who sign up to our platform, we have certain research cohorts. So around specific diseases where there's real unmet need in terms of research and an interest, both from researchers outside of things. And from the patient side of things to be part of something like this, we have certain cohorts, where patients go to a site, you see a disease cohort, that is an area that you have, as a caregiver or patient experience in, you can sign up into that research platform as well. And so, you're getting the same experience of the picnic health timeline and getting your records in your in an easy accessible way, but you're also then contributing to this research cohort and each of those sites people can read a little bit more about. And so, definitely encourage people to check out the areas where we're doing research today. You know, see what other patients are saying on our website and and see if

Evelyn Pyper:  It's it's for you and ask questions, I think that's it's important to keep doing that.

Katie Wilkinson: Yeah, that's super helpful. And I got one of my questions was going to be, You know, I think this is true of many Millennials, like we don't necessarily have a PCP like, sign up for someone on Zocdoc and then you see a different provider. And so my question was going to be, you know, if you can't remember everywhere you've been or, you know, you saw someone in between someone it's interesting, the picnics able to, Sort of like follow this roadmap and and track down your data. That way. And my last question for you is, Around. So like a sign up for picnic.

Evelyn Pyper: yeah, no, I mean it's it's really

Evelyn Pyper:  It's, it's wild to know just how much comes from health data and research and from being kind of on the side like the research side of things and being, you know, prior to picnic on teams that are using this data. Like it can be used for anything from initial drug approvals and ensuring like access in a given region or by a given payer is granted for patients. So not just clinical trial data is being used to make these decisions but increasingly real world evidence is being considered. And so we think about from the, you know, is the drug going to be available on our market. You know our payers good, it's gonna be covered and also like Who is it gonna be available to? So if you're a from a group where you have a particular rare disease subtype of a disease, maybe you're not included on the label for that drug and research. A lot of real world evidence can contribute to saying, Is this safe and effective in your population that wasn't covered in that trial. And so, yeah.


Evelyn Pyper:  Anything from subtypes. I think about you know any work in pregnancy, registries or good example you know pregnant women or people of a child bearing age sometimes are not included in trials and so that's a whole Each of these areas represents like huge. Domains of research. We're really real world evidence is going to decide whether or not this is safe and effective and what the outcomes are for patients. And then also long-term, you know, research studies that have a defined beginning middle and can only tell us so much about time period. But for many people with progressive nerve degenerative conditions. If you know you're seeing the effects over really long periods of time and so some of this work is simply like

Evelyn Pyper:  Is pivotal and just telling us understanding the progression of disease. And and for many of these conditions where we just, we still don't have a cure, We don't have treatments being able to study patients over long periods of time in a way that doesn't create burden for them. Can be You can tell us it can can lead to New information that can lead to treatments. And so, it really is like at every stage of the I would say like drug development process and like every type of kind of health health research in this space. There's a way that real world evidence is being used and and it's really exciting. It's yeah that's that's why I love working in this space is because there's like a direct cause and effect for the type of work that we do. And and having good data means we'll have good outcomes for that research.

Katie Wilkinson: Yeah, this is awesome. I mean you've shared so much information and sort of like peel back the or pulled back the the curtain or the veil of, you know, using health data for research and is there anything else that we've, you know, missed or that you want to just like leave us with about things? People should know. About their about their data.

Evelyn Pyper: I mean I feel it. This was great. No, I really enjoyed this and like I would love to sleep with like thanking you for like this platform you created it's for many reasons. I feel like so important and like I feel like I'm sure like many people you have on your show, like it hits home so much like, you know, I've grandmother with Alzheimer's grandfather's a caregiver for many years like it's very real and And yeah, I think it's just I'm just so glad that that groups like yours exist as well, that like address very specific needs that aren't being met elsewhere, like it. Really. So thank you. That's my left. My last ask is just thank you for that.

Katie Wilkinson: Yeah, thank you. Thank you. We are glad to have this. Platform and hope to you know, be bringing value to people. If people want to find more about picnic health or you, where can they go online?

Evelyn Pyper:  Yeah, picnic health comm will be a great place to start. And yeah, that you'll be able to kind of cruise. What more about what our offering looks like. People can see what the platform itself looks and feels like there and see and read more about some of the great research we're doing as well. So whatever, you know, whatever, part of the picnic health problem, really interest, you you're able to find it there.

Katie Wilkinson: Yeah, that's awesome. I'm not mistaken. I was on the website a while ago, but I think there's like an example of what your data might look like when it's all collected,…

Evelyn Pyper: Yeah.

Katie Wilkinson: which I think is, you know, helpful to sort of see a peak of what you're signing up for. Evelyn's has been so insightful,…

Evelyn Pyper:  Yeah, absolutely.

Katie Wilkinson: I really appreciate your time and we'll be sure to tag picnic you know, once it's posted and live.

Evelyn Pyper:  Awesome. Thank you so much. I really enjoy this. Hey, bye.