Technology connects people to the information tools they need to make informed, educated decisions about their care.
In this episode of Bite the Orange, Grace Cordovano, Co-Founder of Unblock Health and CEO and Founder of Enlightening Results, talks about her work advocating for patients’ health and helping them navigate the system with the use of technology regardless of language, culture, or funds. Grace’s multiple challenges when navigating healthcare led her to seek the improvement of patient experience with tools and information technology. Patients care deeply about their health, but sometimes they need to be coached, and Grace has found ChatGPT to be a successful way to help them understand their situation and even access their unmet needs and assistance with costs. She also discusses why clinical trial recruitment processes can be frustrating for all players involved and even offers several ideas to make the research space less difficult to enter.
Tune in and learn more about how Grace is helping patients navigate healthcare!
FULL EPISODE
BTO_Grace Cordovano: Audio automatically transcribed by Sonix
BTO_Grace Cordovano: this mp3 audio file was automatically transcribed by Sonix with the best speech-to-text algorithms. This transcript may contain errors.
Emmanuel Fombu:
Welcome to Bite the Orange. Through our conversations, we create a roadmap for the future of health with the most impactful leaders in the space. This is your host, Dr. Manny Fombu. Let's make the future of healthcare a reality together.
Emmanuel Fombu:
Good morning, good afternoon, good evening, ladies and gentlemen. Welcome to another episode of Bite the Orange. And today I have a very special guest who is actually a great friend. I've not seen her in a very long time, but when I started, I remember giving my first talk ever, my first panel, and going around preaching about this idea of the future healthcare. Grace was always next to me. So I'm honored today to welcome to the show, Dr. Grace Cordovano. Welcome to the show, Grace.
Grace Cordovano:
Thank you so much, Manny. It's so great to be reunited today.
Emmanuel Fombu:
It's so great, actually, to see you again, because I think we have different paths and you've been consistent on your side, right? A lot of different things I've done since we first met.
Grace Cordovano:
So I'm a board-certified patient advocate. My day-to-day is working with patients and their families from point of diagnosis through survivorship or end-of-life care planning. My whole purpose is to connect people to the information tools and technology they need to make informed, educated decisions about their care. I primarily work in the oncology space but have grown to work at the intersection of really health information, digital health and innovation, and catastrophic situations. Whether it's a cancer diagnosis, whether it's an emergency that lands someone in the hospital, my goal is to help people be able to navigate what do I do now and what do I do next.
Emmanuel Fombu:
You've always been around the patient, always been a patient story for you, even before everyone started to say, you know, it's about the patient, and you have been very strong about this particular concept. So what got you involved in your particular space?
Grace Cordovano:
That's a loaded question, but I'll try to break it down in a nutshell for you. As you may recall, my family's from Poland, and while I was born here, I didn't speak English while I started school. I got the hang of speaking English, and then I became the go-to kid to go and attend appointments and to translate notes and prescription bottles using my trusted encyclopedia and dictionary. There was no Google translate, there were no Polish translators, and it was a challenge for everyone in the community to try to understand US healthcare. Many of the individuals I was helping didn't have health insurance, so they really needed information to make a good judgment call on, does this, why are we going to the doctor? Is there a benefit to taking this prescription? Is this going to help me to go get this treatment or this imaging? I naturally became introduced to patient advocacy, really as like a 10, 12-year-old child, and over time, I realized that I became the community navigator. My first job in high school was working to file medical records, and I quickly understood the power of medical records and the content and the privacy and what I, as a dopey teenager, was entrusted with, the sanctity of that doctor-patient relationship, and thousands of sheets of paper that had to be filed in these manila charts. And I understood that there was some sense of urgency when people called and requested them and they needed them, and they didn't need them just to get care, they needed to do things with them. Eventually, over time, I helped my mom navigate breast cancer, and I couldn't believe that there wasn't a cure for it. As a family that emigrated from Europe, I had such great pride in US healthcare and what the US had to offer our family. So I was stunned when I learned there wasn't a cure for breast cancer, and that really propelled me to go on to grad school where I focused on biochemistry of metabolic disease, understanding what goes wrong and why there aren't cures, and how complex so many of these conditions like cancer may be. I eventually landed with my own cancer diagnosis. I was diagnosed with advanced lymphoma years ago and I took my medical records and went to Sloan-Kettering. Thankfully, that second opinion and four months going to different tests, biopsies, imaging, consultations with different people, surgery, and being placed in isolation after surgery, I was cleared as a misdiagnosis and it was actually a fungal infection I had gotten on my honeymoon two years prior called Histoplasmosis. Looking back, had I had maybe access to some kind of AI tool that could have read my radiology, maybe I could have avoided four months of trying to come to terms with my mortality. And it was when I was healing from that I read an article about patient advocacy, and it was as if all my stars aligned. I recognized the privilege that I had speaking English, having insurance, having a PhD in biochemistry, being walking distance from Sloan-Kettering, knowing what to do with my medical records, and the process still brought me to my knees. What about everybody else that didn't know about doing these things? So I committed to patient advocacy as a profession, and I've been doing that since, and now I've launched Unblock Health, which is a software that is taking all my experiential learning from my personal professional patient advocacy work to create a software that will help patients digitize requesting their medical records and requesting corrections to their records designed from health information management standpoint, as well as the patient that may be requesting the information.
Emmanuel Fombu:
That's a great story and journey, Grace, and this is beyond the idea of just being Polish, right? There are many immigrants in the country right now that are not fortunate to have someone like you that is that strong and knowledgeable about the healthcare system. Like my grandmother herself, I remember being in residency and my grandmother with heart failure when she died, she could not read or write, right? She could not navigate the health system. We had no idea about what health insurance was even though I was in medical school and studying this. And my mom, even as a PhD, said, we didn't know how to navigate this, life insurance, none of those things exist. So have you thought about expanding what you do beyond the Polish, beyond the Polish language or Polish community?
Grace Cordovano:
Absolutely, I work with all different cultures and languages. I'm actually playing with ChatGPT like everyone else, and I'm using it to bridge this whole concept where people say, patients don't understand their records and they're too stupid and they're too illiterate and they don't care. Oh, they do care. They just have to be coached through it. And there's no tools and technology and there's no one inside the four walls of medicine that's going to be paid to teach a patient how to navigate their records. But ChatGPT is giving me some success. I can look at abnormal results and ask it very pointed questions, and then I can say, tell me in Portuguese what my radiology report or CEA-19 means, and it's doing a phenomenal job. I'm in the process of writing it up, but I can bridge whatever language. Is it perfect? No, but I think it's a really nice open-access tool that really can bridge gaps and make this easier for people to try to get started, to ask more educated questions, to try to get a footing as to what's going on with their health and to really make sense of all this information that may be pushed into their patient portal that their doctor may be regurgitating.
Emmanuel Fombu:
Talking about chat, ChatGPT. I got this email the other day from my son's school and they were asking for parents to volunteer to be in this group to discuss ChatGPT. I've seen his name in different places like NFT and all this stuff, just like the back in the days of blockchain, everyone said blockchain. It was an NFT, nice ChatGPT. I didn't take it that serious and I started looking at it and look how much money Microsoft just invested in ChatGPT. So a lot of people are listening. They have no clue what this is. So please tell us. What is ChatGPT?
Grace Cordovano:
It's an interesting tool. So I was intrigued by it and I'm looking at it from the lens of, patients don't have funds or access to be able to invest in these fancy suites of tools that healthcare delivery organizations have. And there's a stigma with being a patient and people say they don't really understand and they're so not tech savvy, and I completely disagree. I think COVID and living in this post-pandemic world has changed that, people are forced to, want to use digital, and they embrace it. There's an app for everything. People are ordering their groceries and paying their bills online. And I do recognize that some patients need help, but that's an even bigger reason to invest in these open-access tools. So what is it? It's just a simple interface where you can go and ask it a question, it's almost like a chatbot, and I can ask it, please tell me what my high cholesterol means, and it'll give me a question, and if you look, it'll give me a response, excuse me to that question. It can write a funny story. It'll prompt you, you can prompt it to do anything but the, with the nuance and understanding that it may not be correct, there could be some misinformation. It's based on whatever information it has access to and it's generating a response, and then you can like and approve it, or you can re-ask the question. So what I've been doing is I check what some of the responses are and then I check it against what I would Google and I would check it against Google Translate, and it's pretty good for the purposes of me trying to help educate patients about what, their health information.
Emmanuel Fombu:
I'm quite impressed how you are always at the forefront of innovation, like the early adopter kind of thing. But the funny thing is, even though every industry will adopt ChatGPT and we have all these concepts at work, in healthcare, we still sit around and argue about these concepts and discuss these technologies and use the buzzwords, and it gets frustrating working in innovation in healthcare. We've been talking about this for years, Grace, Right? I actually stopped going to all like pharma conferences and all these conferences because it's like the same thing talking about in circles. And then you go to lawyers or regulatory. He's all this stuff that happens, right?
Grace Cordovano:
So frustrating.
Emmanuel Fombu:
It is very frustrating, and a lot actually. But with that being said, if you look at the idea of Bite the Orange for the podcast, that's exactly the concept that we're trying to say, right? The skin of the orange is bitter. When you bite through it, it's sweet inside, right? The distinct, different, it's like crossing the chasm. So by innovation, think different, adopt things, we learn along the way. So with that being said, what has been the biggest challenges you faced working in your space?
Grace Cordovano:
I think patient administrative burden. We talk a lot about physician burnout and moral injury. We talk a lot about not burdening vendors when there's implementation of technology. We talk about shortages in our healthcare workers and nursing and all of these concerns, which are very valid. What we don't talk about is how hard it is to be a person living with a diagnosis, especially a chronic illness, a life-altering, life-limiting condition, rare disease, disability, and the amount of work that people need to do to get the care they need, which is patient administrative burden. And it's bad enough that you're sick and not feeling well, it's bad enough you may be underinsured or not, or don't have the finances to be able to support this. You may have a language barrier, you're struggling with social determinants of health, but you also have no tools. Healthcare is the only industry that still has paper on clipboards with a rubber banded pencil, fax machines, copiers, needing to go in person to pick up a paper copy of your medical records when it all should be electronically available. It's just too hard. And my point is, my sole purpose is to alleviate suffering and incrementally improve that experience and really help people hack healthcare. We have to connect people in our community to tools and information technology so they can hack their way through because no one is coming to save them. And instead then what we do is we label people non-compliant, nonadherent, drug-seeking, and all of these labels, when they're really trying to do the best they can do, they just haven't been connected to all the info and tools. It's really not fair.
Emmanuel Fombu:
I really like speaking with you all the time because you are not your industry, but not tied to pharma side or whatever side, right? So you're actually neutral and you advocate for the patient because a lot of times most people will not say the things that we are saying here, right? That's the reality and the truth behind it. And with that being said, what, every time someone has, in healthcare, someone has any idea, the first thing is what's your business? That's a question that they ask every time. Every single time. Who's going to pay for it? The patient will not pay for it because they don't think the patient cares about their health. But once you're diagnosed with cancer, it's quite scary. So tell us, how do patients find you?
Grace Cordovano:
It's all word of mouth. I do zero marketing. I'm very active in my local community and also online and on social media, and I speak at conferences. Most patients find me through word of mouth. Either I've helped someone in the past, I've given a talk at a local church, or a place of worship, I've done a luncheon learn, they perhaps have read a paper. I try to do a lot of educational materials online and I post about them taking complex topics and digesting them maybe in a blog piece or in a webinar or in a podcast. So I try to push out as much information, and over the years I've been doing this personally and professionally for now 25 years. I'm very blessed with an amazing network of colleagues and like-minded and disagreeing people as well. So my inner circle gives me a privilege that if I have a question that's posed to me or a difficult circumstance that I don't know, I can tap someone and say, hey, can you help me here? And I've been very fortunate in that I have a really good network that, there really doesn't, I don't take no for an answer. There has to be an answer and there has to be an individual, and if I can connect someone to the next step, my job is done, and most patients don't come back to me. Sometimes they will, that means I didn't do a good enough job in connecting them. 1 or 2 connections and person is on their way.
Emmanuel Fombu:
And I'll tell you recently, I had someone very close to me got diagnosed with cancer, and that was the first time I knew someone, I never knew anyone directly related to that cancer. And I went down to MSK and I'll tell you, when I walked into that hospital for the first time, I was, I saw people with death in their eyes. You could see people are scared about this. You find out his diagnosis, all of a sudden you have to go through surgery or chemo, you're losing your hair. There's a lot of things happening at the same time, and it affects everyone around you, and it's quite, it's quite scary. And then you go to chemo, which is a very long process, right? And then after that, they probably ask you to get on some medications. You have different communities online telling different ideas and different things you should do and you should change your lifestyle. It's pretty drastic for individuals. So you walk people throughout this entire journey. How do you get involved? Is there death involved? Because it is pretty scary.
Grace Cordovano:
Absolutely. So you're only talking about the clinical what, inside the four walls of medicine? I have the privilege and opportunity to walk with people outside of that experience. The calls at 2:00 in the morning from the spouse wondering what's going to happen to their loved one, are they going to suffer at their end stages of life? The calls from the children who say, My parents can't afford this, they've lost their job, we're not going to have anything to eat, and the power's out, what do we do now? I have the privilege of bridging language barriers and gaps and trying to help people from different cultures understand, How do you prepare an advance directive? How do you bring a family together when there aren't like minds and there's different beliefs? How do you bring peace and dignity and compassion to something as tragic as cancer? And then there's the insurance aspects, the insurance denials, the Social Security disability applications, housing vouchers. It's the whole person. Sloan-Kettering and many cancers have, centers of excellence, do an exceptional job of caring for people, but they really prioritize the diagnosis, not the person, and we really need to be supporting the whole person in their local community. That's really personalized cancer care.
Emmanuel Fombu:
And I really agree with you. When I walked down to MSK and you see this big cancer center, I think the word is quite scary, especially when someone gets diagnosed with cancer and then you walk in and it's a big sign, cancer center. It feels like you're getting judged for walking into the building. Like in general, right? And I see little kids with acute leukemias with the loss of the hair and ... parents. And so some of us are fortunate to have kids that do not go through this, and I could imagine what those parents are going through. Imagine if they lose their jobs today, how much stress that is, and what are the other factors that actually affect health stress, for example, blood pressure? There are many things that happen in day-to-day life that we ignore that, are you like, you feel like you're a therapist, like that point that hold hands and walk people down through this journey? It's a tough job, Grace.
Grace Cordovano:
It is a tough job, and I love my job. I absolutely love what I do. And it's really listening, a lot of what I do is listening. A lot of what I do is sitting with someone and creating space for their suffering and grief. I don't always have the answers and sometimes it's just recognizing that this person needs empathy and this person has unmet needs that our healthcare system has completely failed to acknowledge. They have fears, they have goals that have been shattered, careers that have been put on hold, relationships that have taken a major toll, sexual health, mental health, reproductive health, spiritual health, all of these things come down when you get a cancer diagnosis. And on the other thing that we haven't touched on is the financial toxicity, how much it costs. We have some of the most profound and incredible innovative treatments and medications and all of these different multi-specialty teams that are so good at what they do, but let's not forget about the bill that comes in the mail. The majority of the people that I work with may have insurance, but they're grossly underinsured. They have to contemplate bankruptcy going through a divorce. I have listened to people contemplate suicide, contemplate fleeing the country because they're, they have no idea how they're going to pay for this care and they're just trying to make ends meet.
Emmanuel Fombu:
Everything you said is exactly true, right? It affects like spouses, kids. It's a pretty scary diagnosis. So what are some of the things that you think could really help these patients? For example, in clinical trials, if you live in some rural area and you have, get diagnosed with breast cancer or ovarian cancer, I don't think you have access to the best treatment that's available for you or the top expert physicians that are available to you. So what are some of the technologies that you think could be applied in the field? One, and then two, in the area of recruitment or matching patients to the right trials in a personalized way. And do you see innovative things coming up in the field or anything?
Grace Cordovano:
How much time do we have? Because I can really unload on here. So the clinical trial recruitment process is so frustrating for me. A, we need to be introducing clinical trials at time of diagnosis, not when a patient has gone through all their different lines and then they're told, oh, you don't qualify, you're too sick, you don't meet the inclusion criteria, you've been treated with so many things. That is the biggest shock. So we need to introduce clinical trials as a treatment option immediately, and people should be coached to say, okay, there's a website called ClinicalTrials.gov, here's your diagnosis, let's start there, let's start keeping an eye on this. Connect patients to a peer-to-peer, a peer health support group that is disease-specific because there's so much wisdom there and people can help coach you and you can keep a pulse on what trials may be available, what the toxicities may be like, what's the enrollment criteria, how hard is it? We need to make sure that patients recognize that clinical trials, at least in oncology, it's not just tumor-specific. Now we're talking about precision medicine and biomarkers. We need to make sure that patients have access to molecular testing. How do they navigate financial assistance programs when they can't afford the $5000 or $6000 for testing? People don't even know about liquid biopsies and things that are being used in standard practice at centers of excellence, which is a simple blood test that could be drawn and it could provide some guidance on not just treatment, but selecting a potential clinical trial. Now, don't get me started on clinical trial matching. We have so many companies that are doing a phenomenal job of supposedly matching patients, but ClinicalTrials.gov is up. If I go, so I try to recruit and help patients enroll in trials, 25% of my week goes to clinical trials. No one picks up the phone when you reach out to a study site on ClinicalTrials.gov, no one returns a message, you can't get anyone to help gather your medical records, they point you to a voicemail. So that's a disaster. I think ClinicalTrials.gov at this point is just a placeholder because everyone has moved to formal companies that are doing recruitment, and the companies that are recruiting should be perhaps listed on ClinicalTrials.gov as, this is the person that's in charge for recruitment. If it's, I don't know, Company A, company B, Company C, and let's just not even deal with ClinicalTrials.gov. Once you get what's the solution for our rural, I'm going to say not even our rural, most people, when you're living with a diagnosis want access to something decentralized. Why are we forcing some of our sickest patients to travel across the country to get on a plane, to go to Sloan, or to go to MD Anderson? Why are they going for blood draws and imaging and all of these different things at one specific site? We have to make it easier. We have to find ways to allow people to live with their diagnosis and become a partner in this research because we're leaving too many people out. So number one has to become routine that clinical trials, actually I'm going to go even farther. Clinical trials need to be introduced in schools. Our K through 12 curriculum needs to be updated with this real-world stuff, with health literacy and healthcare experience literacy so children can incrementally learn that this should be standard common knowledge, that yes, your doctor could give you this, but there's this whole realm of clinical trials that can really be so helpful, so it doesn't become a taboo thing, and only a few elite people know about it. So let's get the awareness there and then we need to bring the tools in technology, make sure people have access to their medical records. How can someone search for a clinical trial if they can't spell their diagnosis? They don't know what treatments they've been on, they don't know what their vitals and all these different inclusion criteria are if they don't have the information in front of them. So we need to teach people to do that so they can help themselves or maybe a care partner or an advocate or a colleague, someone can help them. But if you don't have your medical records, there's no way you're finding a clinical trial because they're very, very specific. So there's lots of opportunities. Then you have something, even something simpler, where maybe if you're on Apple, you can participate in some of the basic research. There's so many opportunities to get involved, but people need to really recognize the power of their health information and their power of their data. To open up those channels, we need to build trust, we need to respect privacy and autonomy, and I think that's where we're really going to move the needle when we're talking about future of healthcare.
Emmanuel Fombu:
With that being said, I'll probably make a challenge, right, on today. I think it'll be great for you and I to actually host a separate series of the podcast to pick individual cancers and literally go about all the studies available and talk to the experts behind this to educate patients because it's like a complete mess. How can a patient, first of all, know what medication is being researched or anything else is happening? I think it's quite challenging and I really appreciate what you do. We've talked a lot for a while right now and I think I'd love to bring it back on another episode because I think we could talk for hours and hours. Welcome to the show, Grace, and hope to have you again soon.
Grace Cordovano:
Great. Thank you so much for having me. I look forward to it.
Emmanuel Fombu:
Thank you.
Emmanuel Fombu:
Thank you for listening to Bite the Orange. If you want to change healthcare with us, please contact us at info@EmmanuelFombu.com or you can visit us at EmmanuelFombu.com or BiteTheOrange.com. If you liked this episode and want more information about us, you can also visit us at EmmanuelFombu.com.
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About Grace Cordovano:
Dr. Grace Cordovano, Ph.D., BCPA, is the founder of Enlightening Results. She has dedicated her career to fostering personalized patient advocacy services, specializing in oncology. She strategically guides patients and their care partners through survivorship or end-of-life care planning with empathy, ensuring individuals are armed with the most pertinent, medically credible, and easy-to-understand information and tools to make empowered decisions about their care.
With over 20 years of advocacy experience, she thoroughly understands the barriers patients face due to data silos, high Patient Administrative Burden (PAB), poorly designed, fragmented workflows, and a lack of transparency. Dr. Cordovano co-founded Unblock Health to empower patients and their care partners with modernized tools to request all their electronic health information (EHI) as well as to request corrections to their EHI.
She currently serves on the HITAC Interoperability Standards Workgroup, co-chairs the Sequoia Project Consumer Voices Workgroup, the HIMSS Public Policy Committee, and the HLTH Foundation Techquity Advisory Committee. Dr. Cordovano is also an award-winning patient advocate who has been featured in StatNews, KevinMD, Tincture, The Healthcare Blog, MobiHealthNews, US News & World Report, Kaiser News, and Politico.
Things You’ll Learn:
Unblock Health is a software that helps patients digitally request their health information.
ChatGPT is a simple AI interface where one asks a question, and it'll respond based on the information it has access to.
Patient administrative burden is caused by the vast amount of work people need to do to get the care they need.
The ClinicalTrials.gov website is supposed to list and filter clinical trials for patients to access, but it can be outdated, and contacting studies can be complicated.
Clinical trials in oncology are not just tumor-specific, as many new technologies and approaches are being tested.