From Bench To Bedside: Bringing Therapeutic Innovation Closer To Patients Perspectives On Health And Tech podcast

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From Bench to Bedside: Bringing Therapeutic Innovation Closer to Patients

9d ago 24:27

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While science and technology have driven remarkable breakthroughs, they’ve also created unintended barriers between clinical research and care. The complexity and cost of research limit trials to only the most well-resourced hospitals. As a result, just 3% of patients and providers participate, and doctors often lack access to or the ability to act on life-changing therapies at the point of care. Oracle is closing this gap—embedding clinical trials, evidence-based insights, and innovative therapies directly into electronic health records. The vision: every hospital research-ready, every patient encounter fueling discovery, and therapeutic innovation reaching patients where and when it matters most.

Featuring:

· Moderator: Raj Modi, Senior Director, Global Customer Centre of Excellence, Life Sciences, Oracle

· Panelist: Maria Clark, Market Development Associate Greenphire-Suvoda, Patient Advocate for Cystic Fibrosis Foundation

· Panelist: Christopher P. Boone, Ph. D., Group Vice President, Research Services, Health & Life Sciences, Oracle

Listen as they discuss:

o Why therapeutic innovation often stops short of the point of care—and what it takes to close that gap

o How aggregating genomic, clinical, and real-world data at scale — safely and securely — is key to unlocking this future and driving personalized medicine

o How embedding trials, insights, and therapies into the EHR will reshape access to cutting-edge treatments, lowering cost, and improving outcomes

o How the industry is approaching this shift—and what progress is already underway

Notable quotes:

“Because of these CFTR modulators, patients like myself are living longer than ever before. I am only 23 years old and when I was born my life expectancy was early 20’s.” – Maria Clark

“We have to reimagine our own business processes and really put the needs and preferences of the patients at the center of everything we do.” – Christopher P. Boone, Ph. D.

CTA:

Harness real-world evidence and data-driven insights to inform critical decisions. Our expertise spans commercialization, market access, regulatory and safety protocols, oncology, and rare diseases. Bolster your strategies with data-driven solutions tailored to the life sciences and healthcare industries: Learn More

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Episode Transcript:

Raj Modi:

Hello and welcome to from bench to bedside bringing therapeutic innovation closer to patients. I'm Raj Modi and I'll be your host today. This conversation speaks directly to Oracle's vision for health and life sciences. Despite all the advances we've seen in medical research over the last few decades, there's still a significant gap between scientific discovery and care delivery. And today we're going to explore how we close that gap by embedding research directly into care utilizing unified data. Connected systems and AI. I'm joined today by two fantastic guests who bring both deep expertise and lived experience. First, we have Dr. Chris Boone, who's the group vice president for Oracle Research Services. Chris is a recognized leader in real world evidence and health data innovation. And also joining me is Maria Clarke:, who is a passionate patient advocate who lives with cystic fibrosis and also works tirelessly in our industry helping organizations better understand and support research participants. Chris and Maria, welcome. Thank you both for being here.

Chris Boone:

Thank you, Raj. It's great to be here.

Maria Clarke:

Thank you. So happy to be here.

Raj Modi:

Let's dive into the discussion. Maria, let me start with you. You've written very powerfully about your experience living with cystic fibrosis. When people talk about patient centered research, what does that really mean to you, and how far off are we as an industry from making that real?

Maria Clarke:

Well, I believe this collaborative model, you know, ensures that studies are designed, conducted and interpreted with direct input from patients reflecting on their real-world experiences, their needs and priorities. This ensures you know, patients are full collaborators, not just subject ID numbers you know, in a database. Real humans with real stories and you know, research that better reflects real needs, helps promote trust, and leads to more effective personalized care.

Raj Modi:

That's really powerful, Maria. Thank you for sharing. You've read some raised some really pertinent points here. As a follow up to you, when it comes to access, whether that's clinical trials or the latest treatments, what barriers have you personally faced in your journey and what needs to change?

Maria Clarke:

So accessing care even you know when I'm fortunate enough to have, you know, insurance and advanced medications, it still comes with its own set of hurdles. For instance, you know ordering medications can be complicated, and you know, once appointments are coordinated, the burden of traveling to the clinic and missing work or school for you know, 5 plus hours can be extremely overwhelming. I mean, for instance, yesterday I was at the clinic for five plus hours participating in a research study. It's a long term study. It's like a five year study. I've been involved in with the Children's Hospital of Philadelphia and I was working remotely the whole day while getting tests done and blood drawn. And after all that, you know, had to drive home very weak, especially on the school for those who are from the Philadelphia area. It's pretty brutal after a long day in the clinic so.

Raj Modi:

Maria, that's a, that's a, that's a significant burden on, you know, on your participation into research. Chris, let me bring you in here. You've spent your career at the intersection of policy evidence and strategy from the industry side - how should we be thinking about patient centered research? How do we move from theory to something that actually involves patients in the study design, in access decisions, and in outcomes.

Chris Boone:

That's a phenomenal question and I will say this, Maria, I was in Philadelphia last week and got to experience the traffic that you guys have there first hand. So I, I empathize, in fact, you were driving home after such a pretty intense treatment and and all of that. So it's tough, but I think it's a it's a perfect example that I think embodies all the things that we need to consider as industry as we're becoming you know as as we take it to your point Raj from theory to actual practice, we've been talking about this whole notion of patient centered approaches for a very long time. But I think in my in my mind what it means is that we align the business strategies and the entire, sort of drug development process around the needs and the preferences and outcomes of of patients that are most afflicted with these particular. You know we've we've we've talked that nauseam about, you know, you'll hear a lot about patient driven or patient centric R&D or clinical trials and all these things. But you know just hearing stories like Maria is very Maria is is very powerful because it reminds us that there are real people on the other side of that who have priorities who are, who are prioritizing, you know, sort of the the side effects of these therapies or the inability to drive home after a 5 hour procedure and and just improving the overall quality of life. So I think that we have to start really pivoting our thinking to - how do we design trials in light of all the the advancements we've made in, in digital technologies to the advancements we made even in in sort of scientific outcomes research? You know, I think about, you know there was a big wave of of interest over the last several years of this idea of decentralized trials was sort of was born, out of the was born out of the pandemic and and you know the idea of doing these things virtually was it was definitely embraced, I think about the the notion of utilizing to your point, Raj, real-world evidence and and patient reported outcomes more so in in in trial design and trial data collection more so than we ever did. One of the interesting things about the trial itself that people often forget is that I think randomized special trials are are still the gold standard for for for evidence generation, but they're very limited too, right? And I think that there's a lot that happens outside the walls of these sort of controlled trials that you know it's data that's reflecting the everyday lives of patients that we need to capture that's typically captured through, whether it be their health records or whether it be in this case, wearables or or any other sort of patient generated health data. So I think as the world we start to really pivot to you know, to this, this idea of patient centric, you know sort of drug development or therapy development, I think that we have to sort of reimagine our own business processes and and we and and really put the the needs and the preferences of patients at the center of everything that we do.

Raj Modi:

Thanks, Chris. And you know to follow up on that, there's a huge buzz right now about AI. What's your perspective on AI? I mean, how does AI help with things like identifying eligible patients, surfacing biomarkers, enabling more personalized treatments?

Chris Boone:

Oh, hey, you know what, man? I I know there's a significant amount of fear and and skepticism about the sheer ability of AI, you know? But but I I'm I'm a believer. I'm a fan. I thought it was something that the industry needed for a very long time and it and it is and and honestly, I think the expanded use of AI is is a patient centered approach. Because what we're effectively trying to do is personalize and get closer to precision medicine by utilizing all the available data that's out there utilizing many of the you know whether it's generative AI and natural language processing or other AI approaches to really get closer to what it takes to drive to positive outcomes for patients, right. And and I think that what you gave some perfect examples, the the identification of of biomarkers which then feeds into trial design which that trial design can then feed into carefully identifying the appropriate patients and patient you know cohorts or populations that will be most suitable for these types of trials and and honestly which would allow those particular patients that would have some sort of response to that particular therapy which we can learn a lot from. I I can see the the use of AI and so many use cases throughout the entire life cycle of a patient journey and and an entire life cycle of of a of a therapy. Right? And and I think that it it gets us closer to precision medicine. I think it gets us closer to this idea truly of a learning health system which we all strive for. And and I think that for patients like Maria, we would be able to sort of I I think you believe it or not it it sort of it sounds kind of counterintuitive to say that I think AI will get us closer to a place of empathy and compassion for patients, you know, and building trust that I feel like we need to have. And this whole patient centered approach, but I do believe that to be the case.

Raj Modi:

Maria, let me bring you in there. Empathy and compassion. What's your perspective? You know, how do you feel about the role of AI and generative AI? Large language models which have become incredibly popular recently. What's your perspective on that?

Maria Clarke:

I mean, personally, you know when I can clearly see how my data is used and when I'm included in that process and when there's real accountability, then I can trust the system. And that trust makes me more willing to share, which ultimately leads to better care and stronger research outcomes.

Raj Modi:

So Maria, I'm I'm I'm hearing a thumbs up from you on on on AI. Of course, AI is nothing without data, Chris, real-world data is now a major part of how regulators and clinicians make decisions. Can you talk a little bit about that? And also, can you talk about how Oracle is helping customers turn real world data into real-world evidence?

Chris Boone:

Yeah, yeah, I think. You know, as you think about this idea of real-world data, the real value of it and and, so the challenges that it was trying to address had a lot to do with how do we better capture sort of the patient experience. How do we sort of track the progression of a disease or our patient experience beyond the clinical trial? How do we sort of, how do we create a more, it's more equitable access. Because while Maria lives in Philadelphia, she has access to the Children's Hospital of Philadelphia, there are folks that live in remote parts of Pennsylvania who may not have that same access and and honestly, we we we are not, we haven't effectively designed these sort of accessible trials the way we need to in order to do that. Where I see the world of of of RWE coming in, especially from the patient experience of those that are are are suffering from, if we wanted to use CF as an example, I think it's the AI sort of allows us to sort of aggregate and analyze all the data from all these various sources, which are very important, right? I mean, we have a number of CF patient registries out there. There is the EHR data that we know there's a data from the trial and then of course there is that patient reported data. That data is generated from from RWE and what we're able to do with that is sort of track what the long term impacts and outcomes are of these different therapies, how it affects the quality of life for many of of the patients. And oftentimes, I think when it comes to patients that are dealing with particularly rare diseases is that honestly, once that therapy goes sort of in a what we call the post marketing phase or the post authorization phase, meaning that once it's actually approved by the FDA, you sort of lose sight of those patients, right? Because there's not that longitudinally across from the trial experience to what they're dealing with in the real world. And so I think the the the the power of real world evidence in this case is really sort of to strengthen what we can do sort of in a post approval world and post approval engagement and really tracking the progression of you know and the sort of how the outcomes of those therapies ensuring to Maria's point that there's a level of trust and and sort of open communication from patients as they're tracking their own experiences on a daily basis, and they're reporting it, and it's being captured and actually analyzed along with the other data that's being collected and hopefully it starts to get to this point of really personalizing, you know, I like to call it the the end of one trial of The Walking clinical trial where we're really getting specific to individuals and tailoring our trial protocols for their specific needs. And and and if you're talking about CF, which is has a you know a host of subgroups, those specific mutations of CF you know are important.

Raj Modi:

Yeah, Maria, let me bring you in here. What's your perspective on real world evidence and what does it mean when we say that we wanna reflect the true lived experience of patients?

Maria Clarke:

So you know, when I hear real world evidence as a patient advocate, it resonates deeply. It means, you know, capturing the lived experiences of real people in everyday life, not just what's happening, you know, in tightly controlled clinical trials. It's about evidence that reflects real settings, you know, diverse populations and real needs, ensuring health decisions are meaningful, inclusive, and patient focused.

Raj Modi:

Thanks, Maria. That's that's really insightful. We've covered a lot today. I just want to thank you both for such a thoughtful and inspiring conversation. Before we close Maria and Chris, if listeners want to reach out to you, where could they find you?

Maria Clarke:

Yes, so I am very open on LinkedIn. I post a lot about my experiences as a patient and working within the industry, especially like different feature stories on blogs or news, articles, any of that sort so you can find me on LinkedIn. It's my name: Maria Clark. And I also have an Instagram for specifically cystic fibrosis and my experience is as a patient. So for anyone out there that is interested in learning more about CF or has CF, that is Marias dot dot miracles so you can find me there or on LinkedIn and I'm happy to connect.

Raj Modi:

Excellent. Thanks Maria, Chris. How can people reach out to you?

Chris Boone:

Yeah, I'll go the same. I mean, I think LinkedIn is is a great a great resource or a great tool to to, to, to connect with me. You can find me data hippie on LinkedIn that's truly, truly my handle. And I'm also data hippie on YouTube and data hippie on X. So if you're interested if you use those platforms. I'm I'm available there as well.

Raj Modi:

Wow, you're both so social media savvy. That's amazing. Both again, for for, for the podcast. I've really enjoyed this conversation. Thank you to our listeners. And remember, innovation only matters in this industry if it reaches patience when and where they need it. To learn more, I'd encourage you to read Seema Verma's recent article on LinkedIn which is called AI and the feature of Precision Medicine and also explore what Oracle is doing to embed research directly into the heart of clinical care. Thanks for tuning in and we'll see you next time.

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