Empowering Cancer Patients With Lifesaving Information

Dr. Maya Said, Founder and CEO of Outcomes4Me, aims to empower cancer patients worldwide to be proactive about their care with information and technology. 

On this episode of The Health Pulse podcast, Said shares how a personal health scare illuminated for her how overwhelmed cancer patients feel when they face understanding their diagnosis and treatment options, finding the best providers and clinical trials, managing treatments and costs, and navigating their lives and relationships during treatment. The experience inspired her to launch the platform Outcomes4Me, which uses data and AI to help cancer patients become more informed and connected to improve their outcomes – at no cost.  

Tune in to learn more about the role of data in addressing disparities in cancer care and how generative AI is poised to revolutionize treatment.

Creators & Guests

Host

Alex Maiersperger

SAS

Guest

Maya Said

Founder and CEO, Outcomes4Me

What is The Health Pulse?

How can data, AI and advanced analytics accelerate health innovation? Which new technologies hold the most promise? What are the biggest roadblocks to progress? How can we solve endemic problems?

Join us for The Health Pulse podcast series as we explore fresh perspectives on digital transformation in health care and life sciences. With a special guest expert on each episode*, we’ll tackle the most pressing issues affecting the delivery of health care and therapies worldwide.

All presentations represent the opinions of the presenter and do not represent the position or the opinion of SAS.

ALEX MAIERSPERGER: Today's guest says we use personal technology to solve all of the problems in our lives, except our health. If you had cancer, your physician would need 29 hours per day to read the latest literature to get you the best treatment. Hear how technology is getting the right information to cancer patients and their doctors.

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When a new drug comes out that treats cancer better, it can be easy to think in simplistic terms. You get a cancer diagnosis. And then you treat or hopefully cure the cancer. But there's a whole lot of time, uncertainty, confusion, illness, and financial impact in that often long process. I'm your host, Alex Maiersperger. And today on the Health Pulse Podcast, we get to learn from someone making a difference in this in-between, Dr. Maya Said, founder and CEO of Outcomes4Me. Welcome, Maya.

MAYA SAID: Thank you for hosting me, Alex.

ALEX MAIERSPERGER: So this in-between time between diagnosis and outcome is incredibly difficult. And you're taking it on. Tell me about Outcomes4Me and the part you play in cancer care.

MAYA SAID: Yeah, let me just share why we started Outcomes4Me, which goes back to exactly that in-between time. So I've worked my entire career in the pharmaceutical industry and the healthcare industry. I'm a scientist by training. So I've always believed what you said in the opening, that all we need to do is get new treatments, discover new drugs, and cure diseases. And we'll get there.

And then one thing happened, where I had a health scare. And from one day to the other, I found myself to be a patient. Ultimately, it ended up being benign. I had to do surgery. But it wasn't a big deal. But that time in between something is suspicious to the time of final diagnosis, and then how to manage it was deeply overwhelming in ways I never anticipated.

And I'm not your average patient. I'm a scientist by training. I read science. I Googled. I felt I could die tomorrow or this is nothing. I couldn't parse it out. I have access to providers, doctors. It was very hard to get to the right doctors to get the second opinion, to get treatment, and then ultimately to deal with the cost of care.

So that in-between time is really the realization that in cancer in particular-- and I didn't go through cancer-- from one day to the other, the word cancer life goes upside down, or even the suspicion of something is wrong. And between that time to the time of first getting a definitive diagnosis, what is this thing that we're suspecting is wrong, and then from there to getting to the right treatment, and then to ultimately managing everything around life, costs of life, dealing with life every day, children, otherwise is just incredibly not only hard.

But most people cannot manage it. So this is what led us to start Outcomes4Me, where our goal is to really empower patients, to help them have all the information that allows them to take a proactive approach to their care, to know what they can do, to help them access the resources, and ultimately to achieve better outcomes.

ALEX MAIERSPERGER: Incredible. And I think the reason my blood pressure skyrockets when I'm at the doctor's office, to your point of just that fear and uncertainty of something could be really wrong or something could be not wrong at all, love your story. And you referred to surgery as no big deal. I'm sure it's always a big deal.

I'm glad you're on the other side of it and healthy. So Outcomes4Me, is this you? We need your expertise? Are you flying on a plane to every patient and giving them the rundown? Or what's the technology like on the Outcomes4Me side?

MAYA SAID: So yeah, thank you for asking. So here's the crazy thing for us today. We as people, people first, before becoming patients, have technology solving all aspects of our lives except when it comes to our healthcare, let alone if somebody is diagnosed with cancer, addressing their cancer diagnosis.

So what we're doing is we're using the power of technology to really be able to reach every person wherever they are in the world to actually bring them the tools to know, what are my treatment options? Once a person is diagnosed with cancer, beyond the shock, they ultimately have two questions, what are my options? And how can I best manage my life?

The problem is it's almost impossible to answer these two questions for two reasons. One is the burden of search is on us as people. And we don't know what we should be looking for, how to find that information. And let alone we're in a world where healthcare resources are becoming scarcer. We can't get access to the doctors on time.

The second is the science is really fundamentally moving fast in cancer. So the answer to those questions is constantly changing. And even doctors are unable to keep up. I don't know if you know this, Alex, but there's been a number of data that's been published that today says that for a doctor to keep up with the latest science, they have to be reading 29 hours a day, a business day, to keep up.

It's just impossible. That's where we are. So on one side, it's exciting. The science is evolving. It's exciting times when it comes to cancer care. On the other hand, we're creating a humongous problem. And only one person will lose if they don't get the right drug at the right time in the right setting. And that's the patient.

So we're using technology to really help people get personalized evidence-based navigation that includes treatment options all the way to the drug level based on the latest guidelines, the National Cancer Center Network guidelines, and also connect them to clinical trials, where in cancer, many times a clinical trial is the best treatment, and then help them manage their broader needs, and their broader needs around managing their symptoms, around dealing with financial toxicity, a term that is a huge issue in cancer, around getting the community, talking to somebody else that actually is going through the same thing to help them answer questions like, how do I tell my children about this?

How do I manage with essentially my spouse? So all this is what the technology, which is a platform, is getting to do to patient. And the most important piece here is we are about improving outcomes and democratizing healthcare. And so this entire platform is free to patients.

ALEX MAIERSPERGER: Incredible. You talked about the science evolving, the technology evolving, the advancements there. Obviously, it brings to mind AI. And you talked 29 hours that a physician would need to read. And they probably don't have 29 minutes to catch up on the latest.

And so the app can read those 29 hours or parse out the latest in the evolving science and get it to you. So I imagine that there's some AI under the hood there. What's the biggest opportunity for AI in cancer care?

MAYA SAID: Yeah, so let me unpack that in different ways. And I'm going to come back to what we do with AI. But to answer your question, which is a very broad question, what is the opportunity of AI in cancer care, the way I would think about it is three-fold. And it spans from scientific discovery around really discovering new drugs to ultimately cure cancer to the delivery of care, and then to ultimately improving the patient outcome.

And we play in the improving the patient outcome. But I just want to cover very quickly the first two things. And as you know, now it's very exciting times. Actually, there's two revolution happening today in 2024. One is the Gen AI revolution. Everybody has heard of it.

But also there's a major cancer revolution. Our understanding of how cancer actually happens and what goes wrong in cancer is fundamentally improving. But also, the number of new treatments that are coming to market are also great. Just to give you an example, just in the last two years, there's been over 55 new cancer drugs in market.

This is huge in the United States. Now, to go back to that understanding is going to be fundamentally-- so that's really another revolution happening on the cancer side. And you put the two together. I fundamentally believe that we are within reach to really doing a major change in how we treat cancer and the impact it has on our lives.

So just to unpack that, on the drug discovery side, just the power of Gen AI is going to fundamentally drive us to discover new targets, understand the underlying cause of the disease that will ultimately lead us to get a better treatment. And because cancer is essentially fundamentally the cell going wrong-- it's no longer taking any controlled cues to better manage it-- it's a complex system that has been disrupted.

And so to really be able to address what went wrong, you need to deal with it as a complex system, which is one where AI is going to make a fundamental move. The second is in the care delivery. As I mentioned, there's not enough doctors in the system.

Doctors spend most of their time dealing with administrative work instead of talking to patients. Now, that obviously leads to poor patient outcome, but also leads to physician burnout, which is a huge thing. The number of doctors, or nurses, or even lack of doctors that want to go into the field is huge because of burnout because they want to help patients. They want to deal with paperwork.

And that's where there's a lot of technologies that are today being developed around really making the processes much more efficient, processes around medical record, taking notes from a physician perspective, and really delivering that care. And then the last piece is really what we do, which is really around using AI and Gen AI to ultimately get the right information to the right patient at the right time.

So what does that mean? As you mentioned, there's all kinds of information that's not only there. But it's also being generated. So it's really around conversational AI taking all that, creating that interaction with the patient, the user interface. ChatGPT was a huge revolution. It's not new. Gen AI is not new. But the interface has changed with ChatGPT.

That drove adoption. We want to do the same thing in healthcare, in cancer care, to really help the patient take a more proactive approach to their care. That will fundamentally improve disparities in cancer care. The second is really better deeply understanding cancer. When drugs come to market, they've been developed as part of clinical trials.

That's an extremely well-controlled setting. We used to say in when I was in engineering school or math, assume a spherical cow. There's no spherical cow. But you need to make these assumptions, control the environment to be able to discover new things. Clinical trials are highly controlled environment.

Your average cancer patient that ultimately gets the drug that gets approved is not the same profile as the patient that was in the clinical trial. So we need to get better at understanding the real world experiences of patients with cancer, with these treatments to be able to determine which treatments ultimately are better versus the others because none of them have been compared to each other by the time they make it to market just because there are so many of them coming to market at the same time.

ALEX MAIERSPERGER: You mentioned the disparities in access and in outcomes. Obviously, they exist now. With new advances in technology, is it all pure upside? Are we going to solve all of these disparities in access and outcomes because of this?

MAYA SAID: Yeah, so this is a double-edged sword because in some sense-- and just to make sure everybody kind of knows this, there's big disparities in cancer care. And disparities included because some populations are not being studied in clinical trials. And therefore, we really don't fundamentally understand how cancer is-- the underlying cause of the disease in some population versus others because the clinical trials have not been diversified enough.

And that's changing. And we're trying to change that. But the other is people getting tested for treatments. We know today that in the United States-- I'm not going outside the world-- in the United States, a third of patients are not getting the genomic testing that they should be getting at diagnosis. We know that 25%, a quarter of cancer patients are not getting the most advanced treatments.

So that all creates disparities. Now, with the evolution of both the science of cancer and AI, this could fundamentally-- while our goal is to cure cancer and improve disparities, we could accidentally end up exacerbating disparities and worsen outcomes at the population level. And the reason for this is twofold.

One is the nature of the innovation. We're going towards targeted population, targeted therapies because we better understand the cells. And we're targeting them. What that means is to find the right patients for the right treatment, most of these new treatments need to have a diagnostic test attached to it, which essentially means that people need to be tested.

And as just mentioned, a third of the population is not tested. And this is going to get worse. The second is if you look at the Gen AI, for example, how we train these models and what the data we use to train them, we could exacerbate disparities. So I'll give you an example of a patient we've talked to, where her concern is today, some of the disparities in, for example, breast cancer is it's very well documented Black women are worse off.

They have a worse kind of cancer. And they end up achieving worse outcomes. And they don't get on clinical trials. So we need them to get on a clinical trial. But then if for whatever reason, in the medical record, it says the patient is not compliant, the patient is essentially not following the treatment, not the trial, their chances of getting on a clinical trial is worse. And that essentially is only exacerbating a signal that today exists. But then Gen AI and AI will amplify it.

ALEX MAIERSPERGER: You stuck in the United States with your examples on that one. How about around the rest of the world, looking out across your global perspective? Are there differences that stand out in cancer from one place to another?

MAYA SAID: Yeah, and actually, this one breaks my heart because I'll just share a couple sobering statistics in cancer. So as I mentioned, I mentioned earlier that in the last couple of years, we had 50 new drugs approved in the United States. This is amazing, right? This is showing how quickly we're innovating on cancer.

Now, despite all this, 27%, 27% of new drugs, not new indication, new active substance, so fundamental new innovation, since 2013, in the last 10 years, have not been launched in Europe. I'm not yet to this. So 27%. 20%, only 20% of drugs that have been launched in the last five years are available in emerging markets.

Now, what does that do to a cancer patient? If you're diagnosed with a metastatic cancer, your chance of being around five years from today is less than 20%. So essentially, time matters. How quickly we actually disseminate this matters.

And this is where, to come back to what we're trying to deal with, it's really this notion of information is power. And data fundamentally essentially will address disparities and drive better outcomes. And it's really around collecting data because today there is no data being collected on a global scale that's comparable.

There is no data even collected within the United States. Once the drug is on market, that makes it comparable. And without data, we're not going to be able to address these things. In addition, even if all the data is here, even information without innovation will fundamentally change the lives of many people because it will let them really know how to get access to care.

If I may, I'll just give you one example of a patient that's using our platform. She's originally from Nigeria. And she ultimately ended up making it here. She was diagnosed with cancer. And she knows that if she was to stay in Nigeria, ultimately she's going to die. So she left her family, came here just to get care and dealing with all the cost of care, leaving her children and husband in Nigeria to just get access to this care.

That's kind of both the opportunity, but also, we could do something about this. And it's not all innovation. A lot of it is access and information.

ALEX MAIERSPERGER: Very sobering statistics and very incredible patient stories, and the way you weave in the sort of history where we're at and where we're going. I think all of that combines to probably the most important question I'll ask is, will we cure cancer in our lifetime?

MAYA SAID: So I'll tell you what I believe. It depends what you call cure because essentially, cancer is a disease-- if you look at HIV, have we cured HIV? No, we haven't cured it. But people could live with HIV and live great lives. I think we'll get there with cancer. And we'll get there with cancer in our lifetime, and actually not too far.

I think it's closer than we think. And the reason we'll get there, in my opinion, is twofold. One is cancer is a problem of cells losing control and developing fast. The earlier we detect it, the more curable it becomes. So early detection actually could fundamentally cure cancer.

And there's a lot of new technologies in diagnostic, in circulating DNA that's all around really early detection. So that's number one. Number two, all these treatments that are coming to market are helping us better manage these-- essentially, it's multiple therapies. And then there's always newer cures that fundamentally could get to a better outcome.

So I am hopeful. I think we'll get there.

ALEX MAIERSPERGER: On behalf of myself who's lost family or had family and friends with cancer and so many others that it affects, thank you for what you're doing, for what you're building, and for the impact you're having on cancer care globally. Dr. Maya Said, thank you so much for joining us today.

MAYA SAID: Thank you so much, Alex. Thank you for having me.

ALEX MAIERSPERGER: And to all of our listeners and viewers, we know there's infinite ways for you to spend your time. Thank you for choosing to spend a little bit of it with us. If you'd like to join as a guest or join in the comments, please email us, [e-mail]. We're rooting for you always.