Noah Debrincat 0:00 Sure, I kind of could something like this work. And I'm showing you this more to give you context of what's happening as opposed to, like inspire you as opposed to what it's supposed to be. So, registry portals are a recruitment tool. It engages people for long enough to get their data and match them to a registry study. It's pretty much it. There's no charge on but it's really about engaging them long enough to kind of like, keep them in the loop and get them to answer questions. So, like the feature that you would see which is super clunky right now, but if you click on digital research, the very first thing is completing research task and that pops you over to the Cubase like DEP dashboard, if you will. If you go back to the portal, I'm just trying to see if there's anything else cool. You can just how about you just take a look and just like click around for a second so the My Data tab is kind of interesting. There's like a somewhere to upload documents but also Yeah, I don't think I filled out any of the questionnaires yet but like all the questions that would populate there. In the about there's like a shitty contact form. The Resources tab, I used your idea of like the boxes to have like particular stuff surface. Anyways, you get the idea. Super, super, super basic, and it definitely doesn't look bad, but it's not like amazing, I guess. If we take a step completely back from this like what what do you think like the fundamental necessities are for having literally like, a website that people come back to? That's literally what this is.
Speaker 2 2:06 I think one of the things that you often hear is that just because you build it doesn't mean people will come. And so that is a really hard problem to solve. Like you have to be providing something for the user. And so if people are if someone has gotten to this screen, like what have they done to get there
Noah Debrincat 2:32 like that, yeah, the path here is pretty straightforward, honestly, like, they could just have clicked on a Facebook ad. Well, maybe that's not that's not that big but they clicked on a Facebook ad, they saw a button, they click the button, and then they answered two questionnaires about themselves. Which actually is kind of a lot. I mean, yeah, yeah.
Speaker 2 2:54 I think when you think about if somebody's in a registry for something like this, so the example is like breast cancer registry, then they have breast cancer. So if you think about what, I'm assuming they have breast cancer, is that true? Okay. So if you think about that person, like, they got a diagnosis, they have doctors helping them they have a ton of appointments, they are navigating potentially new treatments, new care teams, new schedules, maybe they have someone in their life that's also helping them. And so what are their needs during that time? They're learning a lot about the condition from a million different places. Probably they probably Googled, like, all sorts of things. They've probably talked to a bunch of doctors, they probably had 1000, handouts and a bunch of folders on their counter that they've been given. And so there's always information seeking that might occur like what can I learn? Has anybody else had this treatment? What's that like? So I can kind of understand why there was that community aspect of some of this. But you can also think about what other spaces might they be going into, like? I know there's a website called stuff that works that a lot of people with, like chronic disabilities go to and it's a community where you can kind of talk about conditions and you can see other people who have it and you can post anonymously and you can learn, but I think like that's an example of a solved problem. It exists already. There's a community where people talk about things. And so the interesting thing, and I guess you'd want to talk to patients, but the interesting thing about a registry is that you are potentially feeling like you're giving to something or like you're a part of something and that's unique like going to WebMD and learning about breast cancer. You can do a bunch of places, communicating with other people you could probably do on Reddit if you want to and you should probably be able to do it here. But being part of something where you could use your condition to do something is actually really unique. And so I think playing on like, what is the impact of what I'm doing here? Why is it important that I'm doing it, and what can I learn about the other people doing it? I think those are the interesting things and I feel like global data insights, complete questionnaires, whatever, if we're going to ask people to do more work, what can we give them? So when I think about so Cubase had, has had, you know, like some goals of improving adherence just in a clinical trial, not in a registry. And the things that I learned there we're setting expectations are super important. So how long will this take? Why am I doing it? What will happen after they're just necessary details for feeling like you trust the thing you're doing? Noticing or like acknowledging that things are personal. So if you have a condition, that's a very personal experience, and being able to personalize it in some way for that person is really helpful. There's little things like this says, Hello, Kirby. That's good. Like I recognize now I'm a person I'm a part of this. There's other things like all the things that I have done Can I see a history of what I've done? Can I see my impact in some cool way? Can I see my journey I can't I don't know all but just like stuff that makes it about me. And that's awesome because we have data here. So in the future, you think about like if you're going to present data than like a really perfect world? How do we make the data like actionable and maybe something that you can share something that you're proud of, so that you understand really quickly if you have low literacy? And then the third thing was using the right language was a big thing I learned. I'm not saying that isn't happening here. But it was just like, interesting tidbit. Like in the app today, when you finish tasks, it says relax, like you're all set. And we got a bunch of bad feedback about like, I'm not relaxed, like I have this condition and I might have a question like, why are you telling me to relax? So using language that makes people feel acknowledged but not condescending? So those are three things I learned about Cubase and then those are the things that I that stand out to me as like what makes a registry unique. Outside of all the other places that people get involved. I don't know if any of that resonates with adults.
Noah Debrincat 7:30 Very, very helpful. There's one particular piece that resonates but I just want to spend a little bit more time asking you things before I get back to that. So the stuff that works website I mean, it just looks awesome. First of all. I like I think what you said Well, there's two things well, all of it resonates but the one other thing that I haven't thought through a lot is like really demonstrating impact. I don't think we do that nearly enough on this. Yeah, on that registry portal that you saw. It's very interesting to hear you say that like the main thing people are going to do is not going to come to this and like get more information. That's interesting. It's gonna be
Speaker 2 8:29 it's an assumption, but like it's there's so much information out Yeah, yeah.
Noah Debrincat 8:36 Okay, now I think I have to lead the witness a little bit.
So I have this idea. I wish that I wish that I could ask you this question without leading the witness at all, but I just have to or else I'll never be able to. Yeah, so my thought is that I'm gonna share my screen here is that the overload that you were describing should be dealt with in a way where we are and this is what Gilead has taught me. They said, just make it. Like, there are no decisions for the person to make on the website. Basically, it's like, I've given you all this information about myself. Now you make the decisions for me and take me through whatever you think that I shouldn't go through. Because they're already overloaded with like decisions, information, whatever. And I'm incredibly inspired by brilliant dot orgs flow. So I'll send you there. The medium of like one of the designers for this I guess, but have you seen the brilliant website at all? No. Oh my god. So it asks you questions when you're signing up, I think like six of them, but you should just do the signup flow yourself at some point. And then like the dashboard is pretty much the most basic thing ever, but like it works. And it just says like, pick up where you left off, which is totally replicable in the registry world. Some recommended for you stuff. And then when you actually go into the tasks, it's like a very visual path to how you get to the end. And you know, their UX in general is just beautiful, but, you know, I know where I'm going, I know what I have to do and I know what it will take to get there. I know exactly like how long it's going to take me to get there. And, you know, basically this whole model is throughout the whole flow. I was basically thinking that this could be the like leveling up of what we have right now. And I'm going to show you some really shitty I mean, actually, I'm not even gonna bother but like, this is like this is like a shity shity mock up of what it would be right? It'd be like you've got your little progress. Bar this whole this card is like tell us more about you. And that's like the Get Started thing. The recommended for you tab would be like, you know, I need to give access to my caregiver. I need to find a trial I need to join the New Jersey support group, you know, and like that's all based on what you what you have and then the path I mean is like, pretty straightforward to it's like whatever that card is. And right now we have all of these questionnaires that are built into Cubase. But if the person can kind of visualize that and how they go through it, I feel like the experience would just be so much better. I don't I don't know if like this in itself makes it a better website, or like makes it more likely for people to spend more time on here, but I'd like to hear your thoughts about it.
Speaker 2 12:07 Yeah, okay. So a few things that I saw there. Were kind of those things that I learned from participants so make it personal when you have things recommended for you when you have progress, stuff like that. It helps you it makes it feel like it's about you. So we're recognizing the journey that we're asking them to go on. And we're making it easy to find things that are for them. So I really like those aspects of it. I think that you know, we're never going to get a we're not going to compete with like Instagram but has endless content and it's literally personalized because it's all of your friends and then all of your influencers. But we are we're serving a different need than Instagram Instagrams, like I need to be mindless for a little and feel connected to people for like a definite brand finite amount of time registry is I want to do something with my diagnosis and I was recommended to join this registry. So we do have like a leg up of somebody, maybe somebody has told them to join this because it was a great user experience. They learned a lot and they got to contribute to something. The only part that I think could be interesting to explore on those mock ups you had were my impact, so maybe not even my impact, but where do I fit into a registry? I think I saw like for some I really think it's a great idea. I'm excited that brilliant is your inspiration. That was really cool. Yeah, and I think I really like the feedback from Gilead about don't ask people to make decisions, because I think that's super valuable. Like maybe we will have to have them make a decision, like make the decision of clicking on the thing, but we won't have to make them scroll through all their tasks and figure out which one to do next, like it's very, very clear. But there was this let me see if I can find it. app that I found for some study, and I took a screenshot of like their app store, screenshots that you put on the App Store. That always stood out to me as something kind of interesting about the information that we could realistically show to anybody. Bring it to load. Let me see.
Noah Debrincat 14:30 The impact piece is not something I was thinking about before I spoke to you so I'm glad that we spoke and it's actually definitely actually had has brought up before but I don't think they you know they visualized it as much as you've kind of described it. You know, they said, oh, I want my data point on the aggregate dashboard of the study, because we have that Dashboard right now, but we don't show them their little data point on it. And that's kind of what you're saying but it's like a very distilled version of what you're saying. So yeah,
Speaker 2 15:02 yeah, I think that's like a really easy way to do it. Like, where do I fit into all this data? But there's also this other piece that I think sometimes it's tough to figure out like, not everybody will look at a graph and then be like, cool that that's interesting. And I'm like, curious about how I can change like, a lot of people will look at a graph and be like, what I had wasn't even taught how to read graphs, like what did this mean to me? So there's like a balance between and how we present data and that's more of a data visualization exercise. I'm not saying it's not a good idea, but I did like, okay, so this is the heartland study. They are. They have like resources and like taps cards and stuff. But something I thought was really interesting was this idea of like participation by state. So it made me think about the different types of data you can provide, like comparing yourself to others, or where do you fit into others or comparing yourself to yourself? And so maybe there's like, instead of having a bar graph, where we put all the states like 50 bars, and you can see it's like, I can very clearly see that I'm in Colorado and everybody else is here. The caveat to data is that what if you're the only person so far then you're alone? And like it's very clear that you're alone? So it's always like, if we're presenting data to show impact. How do we handle like the worst possible case like if I see a lot of times I was told to, like, put data about, you know, how adherent Are you compared to others to the trial, but now imagine that somebody is having a really hard time with their diagnosis, and they're the least adherence, like how awful would that feel? So what do we do about that? How do we frame it to make it not sound terrible? So just something interesting, but I've had looked at a few different apps that had studies and had some sort of engagement part. And they do it really differently. I mean, this is a thread registry, which is all about the learning. And so it's all about tasks and all about learning and I feel like we could be a step up from that. As a nation does it by just having like, you get points if you read things and you get points if you take surveys and the things that you can do are always available for you. And so that's an interesting model of like constantly feeding them new stuff to do. They don't have to search it. It's just like things. This was the stuff that works, which I just, I just love stuff that works. Bailey I think there's a lot of examples. I mean, verily also is core sort of like this, like they just throw tasks in your face, and then you're supposed to just like read things, but this example is one where you kind of have to be so like, intrinsically motivated to come to it. It's easy to stop. So like, I think impact is often easy to show with data, but it's just a matter of how do you present it and then how do you make sure that you take into account the people who maybe are making the least amount of impact like how do you still make them feel okay about it. I'm also thinking about the other people in a patient's lives, like if somebody's spouse is with them through the journey, like they might be seeking community and they might be seeking information. Maybe it's like, I've got like ALS and I need to figure out how to take the frames off my door so that I can get a wheelchair through like what's it like to have a wheelchair in my life now what's it like to help my spouse get into a wheelchair? And so those types of that type of content is probably not I don't know how much control you have over that, but being able to maybe think about the other people in their life, who might want information, which I think I think like you have to fit it into a person's general health seeking journey. Where can you be helpful and it's hard to know
Noah Debrincat 19:12 where I don't know exactly where you stand on like the knowledge stuff, because I'm kind of flipping back and forth in my head between like it's super useful, and obviously, but also like, there's content in the world and honestly, like if people like life changing diseases are similar to people like me who doesn't have like change disease, which I assume they are like, I consume a lot of my informational content from like, like Instagram or something like that or someone sharing stuff to me, you know? Like, I'm probably not downloading a specific soccer app and then getting content from soccer, if that makes sense of the soccer app. So yeah, where do you stand on like the content knowledge base overload thing?
Speaker 2 20:05 I think. I think from like a product standpoint, does Cubase want to be in the business of producing content or being a content platform?
Noah Debrincat 20:18 l no. Hell yeah.
Speaker 2 20:20 So like, from there, like what's our model for being a knowledge base? Well, we have things that are timeless that are always there, and we need to post once Is that realistic? Or do we need to have user generated content where people are updating it themselves? Do we need to have Reddit style whatever like making the most relevant content surface was taught because it's been uploaded? I just don't know that. Cubase wants to be in the content, space. So like, maybe it is just a set number of articles where maybe you learn about what a registry is like maybe you learn about what it means to be adherent. But that only goes so far for engagement. So I'm not sure I have an opinion, for or against strongly, but it's more what does Cubase want it to be and what is sustainable in the long run? I think people like getting information but you're right, like, people might just have private Reddit groups that they read. And they don't want to come to hope for all for it.
Noah Debrincat 21:23 This is a really good thread, actually, because this is exactly the question that Tom asked because I always throw out ideas and then he's like, but Cubase doesn't need to do that. So based on everything we've talked about right now, what pieces of this do you feel like actually are like long term interesting for Cubase?
Speaker 2 21:45 Um I'm not sure I have long term interesting, but when I think about what Cubase like Cubase his primary goal is being a direct to patient data collection software, basically. So that means we have a lot of data and we're collecting data and we want to improve the experience of patients. So in clinical trials, so I think if the goal of the registry is to eventually match people with clinical trials and help them learn about clinical trials, then you can think about the issues that just clinical trial industry in the world face, which is like people don't have trust in clinical trials. They think they're gonna hurt them. They don't understand what they're about. Like there's a lot of myths around clinical trials. There's a lack of health literacy around what it means to participate in one. There's a lot of fear. So if we're improving the experience of participants, and we're collecting data, then how can we do those two things like how help educate on being in a clinical trial help fit into this specific conditions health journey, and do something with the data that we already are getting anyway, which to me is like, recommending stuff for them. Based on the answers that they've given and finding a way to have information for them that that sets expectations for clinical trials. And then also thinking about how you work with specific groups to get people into this like if we have a breast cancer registry, then I bet there's a bunch of cancer centers that could like direct patients to this for a reason. Like you could have MD Anderson in Houston. And there's a bunch of oncologists that represent like, say, here's an interesting registry, you could join so like think about how we work with non participants to to, like, make something that's useful, like if we talk to breast cancer centers, and they're like, you know, one of the things that patients never know is this thing like could we help do that? Like we can solve problems from both sides?
Noah Debrincat 24:03 Yeah. Man, I really didn't. Well, you did give me some, like, different direction and he definitely talked to me a little bit about impact stuff. But I do feel like my like brilliant.org inspiration, kind of got a checkmark from you. And like, the kind of direction things are things are heading. It's, I mean, we literally don't have a designer now. So like, I don't know how we feel something like that off. But like, basically, Tom's question is like between now and the end of the year, is there like one thing that we could do really, really well to impress Gilead to show them that they like that we actually care about this and we're taking this seriously. So now, what I have to do is this steal our conversation distill my previous thoughts into, I don't know, a list of things we could possibly do.
Speaker 2 25:05 I mean, right off the bat, you showed me a couple of things which are like, Where does the person land when they're in it? And so that's like the homepage like, what do they see when they get there? And what actions do they need to take once they're there? And so maybe if you could do one thing, well, it's having a very optimized homepage for different registries and then on the flip side, if there are different sponsors, running registries, giving them the configuration they want, which is a hard balance, like they might want to overload the screen with a million things and articles and random look or dashboards, but you know that we need to simplify it so like balancing configurability with user experience, it's sometimes hard, but that could be your thing, like the homescreen. Where do you start? What do you see when you start? I mean, it would probably improve the participant experience of the whole app. Honestly, if you did something like brilliant
Noah Debrincat 26:03 Yeah, I was thinking that I was thinking if we did something like as nice as brilliant, and like really held people's hands, I mean, the task cards are pretty good because like, you know that you have to do them right away, but it isn't as seamless as like, okay, we're taking you to the next step. Now, you know, like you do actually have to come back and click it.
Speaker 2 26:24 That's true. I mean, you can kind of think about this is not like a homepage but type form surveys if you've ever done those where it just like scrolls you up to the next question like you don't have to go next their back or whatever. So you could just like open up to the thing they need to do although there is something nice about having kind of like a home base. Yeah, experience. Yeah,
Noah Debrincat 26:51 okay. Well, this is great. Kirby. I need to do a little bit more thinking. Could you share that figma you had there?
Speaker 2 26:57 Yeah. Yeah, of course. Also, I really, I do hope that there is another designer after me. I thought there would be I'm not sure how long it will take but I think it will be a great thing.
Noah Debrincat 27:16 Okay, maybe we need it. We need it. Well, thank you so much for brainstorming with me. I hope your next endeavor is fun. Have you shared with people what you're doing or not quite yet?
Speaker 2 27:27 Yeah, I have. It's a not help tech company. I'll be a product designer at a company called vividly. It's like totally different than anything I've ever done. Because literally my degrees in neuroscience and I have a Master's in Health Communication Design. So it's like, totally out of that, but I just, I needed like, pretty low effort job next, which sounds terrible, but I really do need it. So that's sort of what I'm going after for a little while.
Noah Debrincat 27:55 Yeah, I tell you I totally respect you for that. Shit here has been hard for like over a year now. Like really hard. And I get it but yeah, we'll miss you around here for sure. The the small opportunities we have had to work together has always been great. So yeah, I do. Well, thank you for helping me brainstorm I'll if anything comes out of this in the next like few days, I'll let you know.
Speaker 2 28:24 Yeah, please do. Good luck with it. I'll let you know if I have any other ideas to
Noah Debrincat 28:27 please do. All right. Thank you.
Transcribed by https://otter.ai