Glioblastoma Treatment Navigation: Testing, Trials, and Patient Support

“People spend so much time online looking for answers about treatment or about a topic they learned about. We're trying to incorporate all that into one platform.

Navigating brain cancer is a daunting challenge for patients and their loved ones, marked by shock, overwhelming choices, and the urgency to make informed decisions about treatment options. The medical team provides initial guidance, but the plethora of choices in doctors, treatment locations, tests, and clinical trials demands that patients quickly educate themselves to make rational decisions.

Understanding the landscape of brain tumors, including information on medical experts, treatment options, and support sources, becomes crucial for navigating this difficult journey. In April 2024 Mike Pyne led a discussion about the navigation challenges faced by glioblastoma patients and caregivers and shared a prototype software application that he was building to address those needs.

Mike was motivated by the challenges a friend of his had in dealing with his glioblastoma diagnosis, so he set out to develop tools that would support people in a similar situation. His ambition was to revolutionize how glioblastoma patients access treatments and clinical trials, simplifying their search based on genetic mutations and disease stages.

There are many apps that can help cancer patients and their caregivers navigate and automate some of these tasks, but none that were specifically designed for glioblastoma. However, Mike hit a wall in creating content, and in June of 2024 decided to shift the focus of his work from glioblastoma to orthopedics.

Nevertheless, this conversation delivered useful information for glioblastoma and other cancer patients, their loved ones, and software developers building similar tools. What are the navigation challenges facing people with glioblastoma?

Misha Mehta I am the mother of Neev Kolte who was diagnosed with a pediatric brain tumor called DIPG. He battled for 15 months. It gives me great pleasure to introduce Mike Pyne today. Mike is uniquely qualified to talk about the navigation challenges of glioblastoma patients and his caregivers.

When he first saw his friend's challenges upon being diagnosed with GBM (glioblastoma), he set out to develop tools that would help support people in similar situations. Medoh Health revolutionizes how GBM patients access treatments and clinical trials. Simply find the search based on genetic mutations and disease stages.

There are many apps that are currently in the market that would help cancer patients and their caregivers to navigate and automate some of these cancer journey tasks. But none that is specifically made for GBM, and this tool is specific for GBM. Medoh Health is at an early stage of design, and Mike is working on a second iteration of a prototype. That's what he's going to be talking about with us today. Mike Pyne 1:50 Thank you very much, Misha.

Thanks, everyone. My name is Mike. I'm one of the cofounders of Medoh Health, which is a digital health platform that helps glioblastoma patients search, find, and understand treatments and clinical trials that are available today. As most people have probably experienced on this call, when you are diagnosed with cancer, time is of the essence.

I noticed that one of my friends who was diagnosed with glioblastoma wanted to understand and find what treatments and clinical trials options were available to him other than what his doctor was offering him. He said he couldn't believe how difficult it was for him to understand the information, understand what he was eligible for, and then even find the doctors that offer that treatment or clinical trial as a service.

He asked me to help him navigate it because I have nearly ten years experience of working in the medical device space. I basically did sales, marketing, product development for innovators of orthopedic treatment options. But I also created a lot of content around educating patients on the options they had available. When I tried to help him, I couldn't believe how difficult it was.

I knew there were some platforms out there that you could easily just try and search the different clinical trials that are available. But the information was extremely difficult to understand because there was so much medical jargon. Then from that I even found he had so many questions about all of these treatments. And none of them could be answered from different websites and trying to navigate the web.

So what I decided to do was just create a simple platform that allows patients to search by filtering out what options they have based on their genetic mutation, where they live, and the stages of the disease, if they're newly diagnosed or a reoccurrence. Because we didn't want to give them too many options, we wanted to be more specific. What I also wanted to do is help them understand. I just didn't want to give them a clinical trial.

I didn't want to give them a treatment. I wanted them to have their questions answered by basically incorporating an AI tool that allows them to ask questions about the treatment or clinical trial they're looking at. The next step was easily helping find the doctors that offer that treatment in their local area or close by.

And then the last part is their eligibility: help them understand if they're highly eligible, or not eligible at all by asking them a few simple questions about their condition about their experiences in layman's terms that they will be able to answer themselves. And those are basically the four steps of how Medoh works. So what I would like to do is basically show you how it works. Each stage, I'm going to pause and ask for any feedback.

I am open to answering any questions you guys may have, and I want to keep it as informative and engaging as possible. So I'm just going to share my screen now. And I'm going to start with just showing you and giving you an overview of exactly how Medoh works. And in each stage, I'll pause and I'd be willing to answer any questions any of you may have. I just want to also state that we're in the early stages of the development of Medoh.

So there might be a few little mistakes or it might be perfect, but that's why I wanted to do this call. So we can get a little bit of feedback and make little improvements on areas that might not be perfect or areas that can be improved. So as you can see here, what I noticed was there's definitely a few different companies out in the market that do something similar to Medoh, but Medoh differentiates in two very different ways.

The first one is, we wanted to give patients options without them having to fill out hundreds of questions. The way I thought about it is anytime someone's looking for a house, they go to Zillow to look at the different options they have first. Once they find a house, they contact a realtor and then all the work behind it actually goes on to make sure they can buy the house or rent it. I wanted to do the same thing with Medoh.

I wanted to make it as easy as possible by filtering down some of the options by giving patients treatments that they can actually learn and understand about their potential potentially eligible for. I didn't want to create any barriers to entry. The second thing is, I wanted to filter out the ones that weren't going to be applicable from the start without asking for too much information.

So as you can see here in the search bar, we basically asked for four pieces of information: their condition, the variation or mutation that the patient has. As you can see, we have hundreds of different mutations that we just put in. And again, only some of these are relevant, but we want to try and include them all. The reoccurrence. Are you newly diagnosed? Or is this a reoccurrence? And then the location you are in.

The reason why we thought it was important to put the location is because we thought it'd be a lot easier just to filter down the options that are within 100 mile radius or a 200 mile radius of where you currently live. That would just give the patient less choice. And it would also just help them understand: this is what's local to me. But if they wanted to find the options that are outside them, they can always use a filter.

So all you pretty much have to do from that is enter generic pieces of information and press the search bar. If you don't know your mutation, if you don't want to put it in a location, and you just want to try the whole of the US, you can literally remove those pieces of information and it will just give you more options across the whole of the United States for clinical trials and treatments.

And then when you press search, it basically goes to the next stage. So that is the basic search function. And I know that's really simple. But does anyone have any questions about those particular things that I just spoke about? Brian McCloskey 7:45 What if you have multiple mutations? Mike Pyne 7:53 A really good point.

What we're trying to do, and what we're going to do is, on this particular part of the page, we're going to add a filter section. And basically, that filter will allow you to edit or add more filters to it.

So for example, if you have more than one mutation, or you want to try a number of different cities across the United States, we're going to have a little pop up bar here that's going to allow the patient just to change the filters, so they can actually get more accurate results. Again, very similar to how Zillow works, it doesn’t ask for a small piece of information first, and then it gives you filter options the further you go down.

We're also going to do the same thing because we know that's going to be an important part because each person is slightly different, they're going to want to filter certain pieces of information. So that's something that we're going to build in, we just don't have it done yet. Because the way we look at it is we want to basically walk before we can run, build the basics.

And then once we have the basics, build the features that make a bigger difference and make it a better experience. And you'll probably hear me say that a lot over the next hour when I'm talking about this. The next stage is breaking down information into different categories. What I noticed with my friend is also that there were a lot of clinical trials sites to help patients find clinical trials, but they offered no other types of treatments.

So what I wanted to do is basically create a system that was easily interactive, so that your patients and users could easily interact with Medoh and could clearly understand what treatments are approved, what's in clinical trials, what's off label, depending on all the clinical trials around. We just wanted to break it down.

And for example, one thing I noticed from a lot of feedback from patients is that the clinical trials you’re learning about are actually only focusing on the clinical trials, the structure of it and have very little information about the actual treatment as the primary focus. I wanted to explain the treatment first to the patient, because that's what the patient has the most questions about.

If you don't explain the treatment, the patient doesn't really understand why the clinical trial is being conducted. So what we decided to do is focus on just the treatment first, and then help them find doctors, and then help them find the clinical trial. When we go into clinical trials, it will filter out the clinical trials based on the information that you've given and filter out the treatments.

But what we wanted to do before we just jumped straight to the clinical trial and explaining it in depth, we wanted to explain what the primary focus of the treatment was.