Bridging the Gap: Patients in Medical Research with Emily

Are you curious about how patient participation can revolutionize medical research? Join us as we sit down with Emily, a dedicated bio-enthusiast and biotech professional, to uncover her journey from cell biology student to trailblazer at the biotech startup Immu. Emily shares her mission to make complex scientific concepts approachable, fueled by her passion for CRISPR technology and personal experiences that shaped her career. You’ll gain exclusive insights on finding reliable research studies and clinical trials and practical advice on leveraging platforms like clinicaltrials.gov and withpower.com.

Navigate the intricate world of patient research consent forms with Emily’s expert guidance on ensuring fair compensation and understanding key elements such as incidental findings and data transparency. We also explore the power of patient communities, especially for those using medical devices or participating in research, and how these communities foster a sense of control and empowerment. Listen in to discover how being a part of research can transform patient experiences, offering hope and a profound sense of agency and belonging.

https://www.emilyharari.com/
https://www.instagram.com/thepatientscientist?igsh=NHgzejRzb2FreHE2

Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way. 

Chapters

• 0:00 Research Participation and Patient Resources
• 11:37 Understanding Patient Research Consent Forms
• 28:04 Patient Empowerment in Medical Research

Transcript

Jen: 0:08

Hi, my Spoonie sisters, I'm excited to introduce Emily today. This is someone I've known for a couple of years and I'm sure many of you know her as well. So, hi, emily, how are you? Welcome to the show. Hey, jen, thanks for having me. It is so great to see you and to bring you on here. This is one thing I actually never thought was going to happen, so I'm so excited to have you here and I guess do you mind telling listeners a little bit of your backstory and kind of how we know each other?

Emily: 0:38

Yeah, so we know each other from Immu. It's this biotech startup I've been at the past couple of years and I was launching their first decentralized research studies, which means we brought the tech into the homes of people who wanted to be in our study. We were giving people the chance to collect their own blood sample, decide when they collect and be part of that research process with us. Before being in biotech, I was just a bio nerd. I studied cell biology in school. I did a little bit of research in the lab and I learned early on.

Emily: 1:13

I just have a lot more fun interfacing with people and with patients and getting everyone really excited about this. The thrill of discovering something new. Like it feels like it's like our little secret. You know and we're. We're just trying to dig through all of these clues to unravel it, and that's what led me on this track, what makes me really excited about doing more outreach with the community and sharing what I've learned. That's the main point of being here. I think there's a lot of information that patients don't have when it comes to being in scientific research. I wanted to share those insights and I'm really curious to see from your community what do people want to learn more about or like what links do they want access to? I want to put those resources out there, but today I really just want to know resources like that are needed and desired.

Jen: 2:04

Absolutely, and you know I have to give you props. I you know you are such a smart person, you have a mind that baffles me. I just I love listening to people like you speak, but you are also such a people person and so I just gotta, I gotta give you props on that, because sometimes you you get involved with people and it goes a little over your head, right, but I love the fact that you can dumb it down and make things make sense to my little brain sometimes, because a lot of this information sometimes just goes right over our heads, and so, as a patient, we appreciate people like you, I think yeah, and I don't even think of that as dumbing things down.

Emily: 2:42

I think it's really hard to make all these networks of the immune system and things understandable. I had a lot of fun making those TikTok videos for MU explaining immunology. It was tricky to do that and I think that your experience as a patient is a whole other knowledge set. So I think you have tremendous knowledge that I don't have, that RA knowledge. You have this lived experience. You understand how certain symptoms and medications interact that even doctors wouldn't know because you can only know so much from a textbook. So yeah, so touche, I think you've got the expertise too.

Jen: 3:21

Well, thank you. So let's take it back just a little bit. What actually sparked your interest in getting involved in research participation? Involved in research participation Like? Is this something where I guess you were growing up and just seemed like the fascinating subject to go into in the future, or how did that spark get started For a really early age I saw people around me get sick.

Emily: 3:45

I was in a carpool, you know four moms driving us to school every day and two of the moms had gotten cancer and it passed. Unfortunately it passed away. I was very young. I don't know if I totally understood everything that that implicated, but I remember thinking like what is this? What is that that take people from us and how can we understand it?

Emily: 4:10

And then I remember in high school I don't know, I just would read these research papers out of curiosity and they would sort of break down what cancer is and how it operates. And it's just this growth and proliferation of cells and this ability to see on the cellular level how things work. I think that gave me some sense of agency or control over the situation. So throughout high school I just I really liked biology and understanding the microscopic world.

Emily: 4:43

I got really excited about CRISPR technology, which is this genetic editing that you can do in a person's cells to potentially cure diseases, like really get at the root cause. And that's what drew me to Berkeley, because Jennifer Doudna, the co-founder or not founder, but co-creator of that technology, got to be in her class. And it was just one step led to another. I think seeing at the very beginning how people are impacted by disease, but then finding the joy in that microscopic world that we all live and breathe but it's just underneath our noses. We don't even know all these miraculous things that are happening on a daily basis. That's what kept me in that space.

Jen: 5:25

Well, I have to say, you're so good at what you do, so my next question for you is what are some reliable sources for finding research studies or even clinical trials?

Emily: 5:35

Some reliable sources are the obvious. You know clinicaltrialsgov, that's one for sure. I would say it's pretty hard to navigate. It's just a little clunky and looks like it was made in the 90s or something. There is another website actually that I've come across recently called Power what's withpowercom is the URL and they've basically taken clinicaltrialsgov and made it a lot easier to navigate. You could search by all these different categories. It seems a lot more user-friendly as an experience, you know, signing up for studies and finding the right fit for you. So that one is cool Like I even signed up for some studies on there myself, so I'm curious to see how that pans out.

Emily: 6:19

There's also these groups that focus on clinical trial recruitment, so they are like the bridge between patients and research groups for looking for those patients. I haven't worked with these groups specifically, I just sort of met them in my work at MU. Mu decided to just directly work with patients. But if there's a group that needs that introduction, sanguine Biosciences is a group. Honey Bee Trials is another. They have an app that's kind of nice to just do it on your phone.

Emily: 6:53

And Savvy Co-op is pretty cool because it's a patient-owned cooperative. So that's a cool model when we think about who's bought into it, who owns the group, and that Savvy Co-op is founded by a patient as well cystic fibrosis so he really understands a lot of aspects of that experience. Those are the ones I would highlight, but I think generally if you're looking for a research opportunity, you can go to nonprofits, and especially these grassroots nonprofits are pretty cool because they're usually led by patients or parents of patients and they're very plugged in and they're very selective about which studies they vet and you can really trust that they've thought about your best interests.

Jen: 7:46

You know, I think that's something that in the beginning, when you have been diagnosed with something and you want to look into these things, you just really have no idea where to go. And even when I started diving into advocacy and getting more involved, you know, sometimes people would reach out to me and I had no idea what they were and so it's like, okay, how do I know this is actually a thing and this is reputable and honestly for me I didn't know all the stuff that you know, so it took some time and I did start getting involved and getting to know Savvy Co-op. I didn't butcher that, did I Savvy, and I usually just call it Savvy, and the other one is Rare Patient Voice.

Jen: 8:26

That's the other one that I've gotten involved with and that one's great for you know, a lot of times they just want to ask some questions and get your input on things and it's a great paid opportunity as well. But all this other stuff totally not familiar, and without somebody like you that knows that kind of stuff it's going to be over my head.

Emily: 8:43

I don't know. I think maybe doctors also may have studies they're recruiting for, but just generally doctors don't have a lot of resources, they have very limited time and energy and staff don't have a lot of resources. They have very limited time and energy and staff. So it is important that patient advocates like yourself present opportunities to people and we do our due diligence to make sure that the opportunities we share we feel really confident about.

Jen: 9:06

Definitely because we don't want to share about something that we don't feel is going to be a good fit for anyone else if we don't know anything about it either. Okay, my next direction. Sorry, my mind just went woo and understanding compensation. So what types of compensation can patients typically expect when participating in research studies?

Emily: 9:24

Yeah, you'll look at a variety of options out there You'll see. Sometimes you get to just keep the device that they give you, like a cool smartwatch or something. Other times it's monetary. Most of the time there's some monetary component and I definitely think patients should be compensated for their time. It is valuable and should not be undervalued and should not be undervalued. On the other hand, do hope patients and researchers can break out of this transactional model of research and work more towards a collaborative process, for example, returning your data that is very valuable to you as a patient. Even if it's not clinically validated data, meaning you can't make medical decisions off of it, according to the FDA and regulatory groups, it's still insightful. It still gets you thinking about. It could be about your DNA, if it's a genetic test, or certain proteins if it's proteomic.

Emily: 10:33

I think that getting your data returned to you is a kind of value proposition that isn't always talked about and we can get into the reasons of that. Why don't we see data return as often featured as monetary compensation? Yeah, and when it gets into the dollar amounts? So it depends on the disease area the more rare the disease and the harder to get those patients into studies, the more they'll compensate. But I'll see somewhere around, like for RA, I've seen somewhere $300 for a research group to pay a team that brings in a patient, gives them the consent form and hands them over to a research team. So I think that's just helpful because you can think, well, I'm worth at least a few hundred bucks to this group, right, and I think you're worth a lot more than that. But I think being transparent about those numbers is helpful. Framing You're muted.

Jen: 11:40

Sorry, I keep muting myself in between. That way, if I cough or sneeze or something, then I'm not getting caught. No problem, never know, okay. So what I was going to talk to you about next is so how can patients ensure that they actually reach that what they feel is a fair compensation? Is there something they need to do or say it's?

Emily: 12:01

pretty set in stone once you encounter a study because they have to run everything by the IRB I believe it's the Investigational Review Board I could be wrong about the exact acronym there but the IRB needs everything laid out and approved before you talk to a patient about your research study. So there's not much negotiating there. You can, as a patient you know, share your feedback and if let's just say that a study is compensating you know, maybe just a $25 gift card and is not going to return your data, you can decide not to join and you can tell them I'm not joining because you're not giving me my data or I was expecting more money for the time that you're expecting me to put in. I know that.

Emily: 12:57

You know, in this disease area I'm worth at least a few hundred bucks to you or something like that. You don't want to get too hard on the research team. They're doing their best, but they need to hear from patients what patients really want and what actually incentivizes them. And sometimes it's not just you know an extra hundred bucks, but sometimes it's knowledge about the data that only exists because of you as a patient. So sharing those reasons is very helpful to those teams, helping them grow and for their next study, making it more accessible. Thank you for that.

Jen: 13:34

I think that's a really good point. What are key elements that patients should look for in a consent form before agreeing to participate in a study?

Emily: 13:43

Yes, consent forms Okay. So as someone who's written consent forms and gone back and forth with the IRB about everything we need to include, I'm really eager to share these insights. I think that people get consent forms. It's like the terms and conditions. It's this big document and we're not lawyers, we're not looking through the fine print of things. So this is what I would do and I join research studies just for fun. Sometimes I like to be part of some fun studies and sometimes they'll say we'll go over the consent form in our onboarding call. I'll ask can you send me a copy of the consent form before the call so that I have time to take a look at it? The fact that some groups want to just walk through it with you and then on the spot ask you so, are you in or not, that can create some pressure. You may say yes in the moment but not have time to think it all through. So that's the meta first comment on consent forms, which is get the consent form first if you have that interest in taking a closer look. So now the closer look.

Emily: 14:52

There's about five things I look out for and I'll usually, you know, control F on my computer these keywords, just to get to the point and get to that first. So the first one is the question will you return my data To me? That's really valuable. I like to do research to learn things about myself, about the whatever disease area we're in. So I will ask will you return my data? In what form? And if I saw that when I control F report, that's like a keyword, you'll see Then if that's missing. That's when I ask are you going to give me this data back? Because it's not mentioned in the consent form? There's sometimes cohort reports versus individual reports. So if I control F report and I see cohort report, that generally means we're going to share about the group in the study versus individual report, means we're going to give you your individual data back and you'll learn something uniquely about you. Obviously the latter is preferred and that's what I would inquire about.

Emily: 16:04

So the third thing is I would look for incidental findings, and it's not if you control F incidental. I don't know if it'll always come up like that. It's usually a yes or no opt-in question of you may find something that we weren't expecting. Do you want to know about this, yes or no? And every patient has the right to decide. I don't want surprises like that. There's a burden of knowledge right To discover that maybe there's some underlying condition you were totally unprepared to encounter. But if you want to know those things, then you have the right to opt into that. What's the point of leveraging these powerful technologies if we don't leverage all of that knowledge that we would want to take action on? When I don't see that yes or no opt-in question about unexpected things, then I will send a question to the team. Hey, will you let me know about incidental findings that you come across in my data? And that's how I would phrase that question.

Emily: 17:12

So the third thing I would look for is the use of my data, and you can look for any mention of other companies or universities, like collaborations. For me, I'm curious about where's my data going, who's selling it, who's making money off of it. It's not inherently evil to make money off of the data. That's kind of how these companies can sustain themselves and keep doing cold research. But that's more of a curiosity for me. So this is like lower priority for me personally. But if I don't see any mention of which companies they're working with, which universities, if that's not explicit, I'll ask the research team hey, what kinds of transactions could my data be part of Like? Is it sold? Is it a university collab? And some people may feel differently about that.

Emily: 18:03

Last couple things, I would say that it's a follow-up to the last question. I would ask the research team hey, if you share my data, how can I be notified of that? What sort of transparency can you offer me? That was something at MU we were really passionate about, which is we want to notify people after we share their data with another group. That transparency is unheard of. So I don't think you'll get the answer you love from that question. But asking that question the more and more patients ask about transparency, the more we can generate this demand from other teams. But asking that question the more and more patients ask about transparency, the more we can generate this demand from other teams. Because I recall the IRB, when MU suggested doing this, they responded with why? Why would you tell people? It just creates more problems.

Emily: 18:50

I think it's so right for people to know what's done with their data.

Emily: 18:54

I think it's a right for people to know what's done with their data.

Emily: 18:56

Lastly, if it's not clear when you control, sponsor or funding, then I would ask directly who is sponsoring this study?

Emily: 19:06

What are the funding sources? You know, if it's a drug, then the sponsor is going to be the drug developer and we really want to think critically about you know the data that they share. I don't want to villainize pharma, but we should be upfront about this. There's a TED talk called the Hidden Side of Clinical Trials and it gets into some of the reporting that is or isn't done when a drug is on the line. So just knowing you know who is behind the research can give you all of the clarity about incentives and can make you feel more informed about you know who has your sample in hand. At the end of the day, people do this research and it's a very human thing to do science and to interpret and to generate statistical values. So that's my long-winded answer and if people are interested in this being just a bullet list, let me know. I really want to see what format works best for people or what knowledge they want to refer back to.

Jen: 20:15

Thank you, I think that was some really good information for us. Do you think there's any red flags or warning signs that patients should be aware of on these consent forms?

Emily: 20:26

Yeah. So this is a good question that another patient advocate had asked me about this. She actually forwarded me an email. She said hey, this looks kind of sus, can you let me know? If this is weird? And I saw it was an email to her about biobanking, getting her sample to put into a bank, you know frozen facility that other research groups could just access on demand. So you know, if you're a patient who really cares about knowing the scientists, on the other end that's probably not a good option for you because you're basically detached from your sample a lot of the time that you give it to the bank and you don't hear back.

Emily: 22:13

Some people just want compensation and they're very happy to give their sample. So I think it's hard to say compensation and they're very happy to give their sample. So I think it's hard to say Big red flag. The main one is they should have IRB approval. They should have the approval of an ethics board because if they don't they could be doing research. But it's heavily frowned upon, especially by the FDA. So that's the main thing.

Emily: 22:36

If you don't see them mention their IRB in their consent form, you can ask them directly about their IRB protocol number, which ethics board they're with. I really like when I see a consent form that has the contact information of their IRB, because it means if they're not doing things so great, you can tell the company, but you can also tell the IRB that they're responsible to answer to the more transactional models. For me personally, it's not a red flag, but it's an orange flag, a yellow flag. It's just. I don't like to do things transactionally personally and so when it's hey, for this, we'll give you this much money and just that's the end of the conversation. It's something I put in the other email folder to not consider. If your community gets messages for studies or sees ads, take a screenshot, share it with me or we'll figure out how to keep lines of communication open. But I really want to help people navigate these decisions.

Jen: 23:36

I think that's a really helpful thing for us to have, and so I thank you for offering that. What are some rights that patients have when they participate in these research studies?

Emily: 23:47

Right. So the consent forms will explicitly state you have the right to pull out of the study at any time. You have the right to ask them to dispose of your sample and realistically, they can do that after you tell them if they've already shared some of the sample with another team. There's only so much they can do. I personally believe that your data is a right. It wouldn't exist without you and I don't think that you relinquish that right the second you give your sample. I think it's a very realistic expectation, but it hasn't been demanded by the community of research institutions. So gradually we're seeing more institutions are offering data reports, but not all of them.

Emily: 24:31

There are some really cool initiatives I've been seeing. I think Pfizer has a clinical trial participant data return initiative. It's a platform that people can go in and access their data in. So there are steps in the positive direction. But I really hope to generate this movement with people of it's an expectation. It's an expectation, it's not.

Emily: 25:01

Please could I have my data? It's you're going to give me my data right and if they say no, then that's a deal breaker for you. It could be the research is just so cool and you're down to do it. I've been okay with that before. To play devil's advocate, I would say, or just to give the other side of the story. It takes a lot of extra work to return data to patients. That's because the IRB if you want to do that, you're going to have to set up all these extra protocols about what to say and what to do and how to format it, because there could be a burden with this knowledge and science. Communication is an art just as much as a science. So if it's a small research team, I would just manage expectations. There's only so much capacity to allocate resources to translating these really complex concepts in a way that is not misinforming patients or giving them the wrong ideas.

Jen: 25:58

Yeah, definitely. So next let's talk risk assessment, and so I'm going to kind of deviate a little bit from what I had sent you for the question. So I guess I want to give an example. So you know, before I have signed up to do things where really all it is is I'm giving them. Before I have signed up to do things where really all it is is I'm giving them information from me. I'm not actually giving them a blood sample or anything like that, I'm just giving them my opinion on medication or information about my illness, and it's strictly that.

Jen: 26:36

But there's actually something newer in my life that I had gotten a reach out from and a local to me. I was invited to participate in a clinical trial, and of course I'm always fascinated by this stuff. But as soon as I mentioned it to my spouse he was just like no, they want what, and so I haven't even brought out the form to show to him, and so I guess I want to ask you risk assessment when you're looking at something that is more than information. If you're talking about putting something in your body for a clinical trial, what kind of information would you give to someone?

Emily: 27:06

Yeah, so just to clarify. So this is an interventional study, meaning there's an intervention introduced and it's taking a drug or a substance, and that seems to be like the uncertainty here is taking that.

Jen: 27:22

So it's actually a device. I don't know how much I can actually share, but it's. It's um putting in a device that is supposed to help with controlling inflammation in the body, and so what advice would you give to someone when they're looking at a risk assessment on something like that?

Emily: 27:38

yeah, you. First I would ask um you know the team to clearly state the risks and the benefits. They have to communicate those to you. According to their irb, if it's a device, investigational device approval is something we have to get an mu. It's something that they have to go through through the irb, so there's like a whole protocol there and they should be transparent about all those risks and benefits. You can trust that they would tell you that information.

Emily: 28:05

But it also can help to hop into some patient groups of other people who have experience with these devices. I know that Vegas nerve stimulating devices has kind of hopped on the market for autoimmune and I believe there could be some patient groups. That's another thing that I really. I've seen a lot of patient groups come together and talk online about medications they're working on or things in the clinical world. But I would love to see communities of patients in research studies finding each other and congregating.

Emily: 28:36

At MU we started talking about facilitating a community like that, but it would have taken a lot of work with the IRB because there are all these privacy concerns, whereas if patients self-organize this, they can't control what you do in your personal social media. So if patients do this on their own. You know Facebook, reddit, I don't know anywhere then that could generate a lot of insight. How do you find people in these studies? Again, you could just start a thread based on this sort of device.

Emily: 29:04

But yeah, looking into the barrier to entry and the barrier to exit may also be insightful, like how invasive is getting this device in and how invasive is it to get it out. I think a lot of times in medical spaces we talk about, oh, it's so easy to start, or oh, these meds will kick in in a few weeks, but we don't ask at the outset well, what if I want to taper off this medication? How long would that take? Or remove this device? What are the complications with that? So that long-term thinking and establishing those timelines on when it gets out or when even the question of removing the thing is brought up, would be pretty wise to approach it before embarking on that.

Jen: 29:52

I think that's some helpful information because you know, of course they're going to send over those consent forms. And if I'm not comfortable with it and I don't understand it, not only am I going to talk to my spouse, but I'm going to reach out to other people. I might reach out to you and say, OK, does this look right? Am I missing something here? And to be honest, you know, when I was sent, everything looked great and to me I'm like maybe this is worth looking into. But maybe this is worth looking into. But it's always nice to have somebody else take a peek, because you never know if there's something that you're overlooking.

Emily: 30:20

Yeah, patient communities, I think, are the most powerful source. So if you can ask for introductions to other people with that device and that experience, that's probably what would make you feel the most empowered, because then you get to ask them all these questions.

Jen: 30:33

Okay, so my next question for you. This is about benefits of participation. So what potential benefits could patients gain from participating in research studies?

Emily: 30:44

That's a fun question because it's something that I was surprised by or didn't expect at MU was a patient had messaged me once to say thank you for everything you've done for me, and we were like we were doing an observational study. We didn't introduce an intervention, a device or a drug to treat their disease. So what had we done for them? We, we were more thank you. Thank you for letting us observe your disease, you know, and how and how it behaves. But what I noticed was that agency is a therapeutic, the ability to feel agency, to make something of your suffering. If you're in a flare up and there's nothing to do but just endure it, that is really debilitating. But you can apply that to finding the answers and, better yet, find a community that's working on it together.

Emily: 31:46

A lot of people say hope, right, hope is the general thing that makes people physically feel better, and I agree with that. But where does hope come from? I think it starts with that sense of agency, and I'm probably deviating from the question a bit. I think that's a serious benefit of research that people underestimate, which is when you're in your lowest moments of a condition that makes you feel out of control. Research is one of those ways to take back that narrative and to know that you're doing something today that can help you tomorrow or maybe help a lot of other people. It's very powerful and I've seen people's conditions just improve, like when we checked in on patients. The further along they were in the study there was some more energy. When we spoke to them, like this drive, like okay, let's do this, and that energy does. It's not from nowhere it comes from, comes from within, but it comes from this feeling of empowerment that's what I was gonna say.

Jen: 32:46

I was gonna say it's almost like taking your power back and feeling like you have a voice, even though it doesn't seem like much at the moment, but sometimes those little things. They feel like a big change in giving your power.

Emily: 33:00

Definitely. I think another thing too is in the research setting. We really want to know everything and there were a lot of patients I talked to who experienced medical gaslighting or just feeling dismissed in a clinical setting, whether that was you know. We know that the medical system's overburdened and I don't want to overlook that. A lot of times patients aren't listened to.

Emily: 33:27

There's a Dr, rita Sharon, who has a TED Talk about narrative medicine and how you can actually learn a lot by listening to a patient's story In research. That could not be more true. And I think a lot of patients who had patient's story In research, that could not be more true. And I think a lot of patients who had medical gaslighting before and who felt dismissed previously. They come into a research setting and they're like, oh, you want, when you say, tell me more, you actually want to hear more. You want to hear these really weird symptoms that don't make sense for this diagnosis, and it's definitely that is where we can improve and where we can uncover that new biomarker. So that's another benefit, which is you can really be heard for your entire experience.

Jen: 34:09

That's definitely a huge benefit, because I think so many people are used to showing up at a doctor's office feeling like, okay, I've got 10 minutes, how much can I fit in to tell you and what is high priority to tell you? Wow, okay. So ethical considerations what ethical considerations should patient keep in mind when deciding to participate in a research?

Emily: 34:29

I mean, we got into it in the consent forms, right About? You know the right to learn something. Maybe you weren't even expecting. If we're talking about the history of ethics of scientific research, it's been a little bit of a bumpy ride in American history, at least in my understanding of it. You know, previously there were incidences like the Tuskegee trials and the story of Henrietta Lacks and the story of Henrietta Lacks who was not compensated for her sample.

Emily: 35:01

We've come a really long way, but I think it's important for people to know that if something seems unethical, they should report it, and they should report it to the IRB and to feel empowered in that sense. So the use of your sample is it's something that's heavily monitored now by the IRB. I don't know if I should say monitored, but it should be outlined very clearly and there are all these protocols put in place now. It's not like Tuskegee and Henrietta's time when there were no rules established. But yeah, you can always withdraw your consent if you don't think things are being done well and you can always report it to that.

Jen: 35:39

Thank you for sharing that, because I know that for myself, like very many other people, we aren't aware of that unless we ask questions like these of someone like you. I feel like I'm butchering what I'm saying, but I appreciate the fact that you're sharing this information and I'm hoping that it helps someone, because we don't know until we know.

Emily: 35:58

Yeah, definitely.

Jen: 36:00

And I probably have about 20 more questions I could easily ask you, but I'm looking at the time and I know we don't have a lot of time so I'm going to skip ahead. But what long-term impact do you hope patient participation in research will have on the medical and scientific community.

Emily: 36:16

I think it's more than just participating, but now we're in a movement of education and we can share these insights People who have been on both sides of it. Right, like writing the forms and running the studies, but also being in the studies. I'm such an annoying study participant. Whenever I'm reading through the forms and going through the whatever onboarding, I'm constantly like oh, this just feedback for you, by the way, for next time.

Emily: 36:43

I think this new wave of patient empowerment is really centered around data. Data is the big conversation we're having in biology now. We've generated so much of it. There are all these AI models that are training on it and people are really excited about the data. The companies own the data and I understand that they need some way to generate value to attract collaborators, but at the same time, they're still asking patients to generate more data.

Emily: 37:13

Right, and now that we're in this empowered movement of knowing how much we're really worth and how much our data is critical to the whole operation, I want more patients to ask am I going to get my data? If the answer is no, totally fine. We know there are limitations to certain teams and what they can do. The IRB already set this study protocol in stone. That's fine, but the more we start asking these questions am I going to get it? How am I going to get it? When am I going to get it? Is it going to be at the very end of the study? When is that going to end?

Emily: 37:47

In a couple of years? Versus shorter timelines that are more practically actionable for you. Even if the data is not designed to be actionable, you know it's, you want to, you want to know things as soon as you. So that's the biggest takeaway I hope to give people. You get that consent form and you ask, hey, when's my data getting to me? Not is it, will it if you decide, but when? And that can switch the dialogue and shift some of these power dynamics a little bit, definitely, absolutely Well.

Jen: 38:26

thank you so much for taking the time to share your knowledge with us and I hope we can have you back and maybe guests can give us some more questions to ask you.

Emily: 38:37

Definitely. There are really cool teams out there doing incredible patient empowerment work. One that caught my eye recently is called Commend. They are very cool. On my website I link to some of the groups that are doing exciting things. I don't know where I'll go next in my next venture. I've stepped away from MU and I'm exploring my new opportunities, but whatever they are, I really hope to keep the patient voice in the work I'm doing. That would be ideal and I'm looking forward to sharing more of those insights as they come along in that work.

Jen: 39:10

We definitely look forward to it too. Well, stay in touch and we will make sure that in the show notes we have all the information for you, as well as how to get a hold of Emily and all the good stuff. So thank you for your time and my sweetie sisters, until next time. Don't forget your spoon.