The Health Pulse

STACY HURT: We're very proud of the fact that when we say that we are patients first and that we are patient centric, we put our money where our mouth is by appointing a top leadership executive into this role. And what I do as Chief Patient Officer, I am the voice of the patient when the patient's not in the room.

ALEX MAIERSPERGER: Today, you'll learn, as a patient facing a health challenge, how to own your data and get the best care possible. And as an organization, how to put the patient first in clinical trials and beyond. We welcome Stacy Hurt, Chief Patient Officer at Parexel.

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Stacy, you have a North Star story for patient advocacy. I would love for you to share it.

STACY HURT: Yeah, so when I was starting my advocacy journey, when I was coming out of my illness and finding my calling and my mission in advocacy, and I just wanted to help people achieve the same sort of outcome that I was fortunate to achieve. And so I was seeking second opinions for patients that maybe didn't have access to a National Cancer Institute like I did here in Pittsburgh, people living in very rural, underserved areas.

And they were finding me on the internet. They were finding my story and my fortunate outcome. And they didn't know what they didn't know. So they reached out to me to say, hey, Stacy, can you seek a second opinion for me?

And so what I was doing was patients didn't even really know me. But they would send me their records, or their disks, their scans, et cetera. And I would compile this information and try to take it down to Hillman Cancer Center where I am, to try to get them a second opinion on their treatment. And a patient found me on the internet, reached out to me, sent me all of her paper records.

It was like a stack this thick. And sent them to me in the mail to get the second opinion. And by the time those documents reached me, unfortunately, the patient died. And I still remember burning those records in the fire, and watching them, and just being super sad that I couldn't get a better treatment option for her.

But that really drove my mission and what I do to try to find that for people, to try to get them the absolute best option possible, because I feel like every patient, no matter the color of their skin, their zip code, where they live, where they come from, everyone should have the best chance to beat cancer like I did. And I want to-- I want to do that for people.

ALEX MAIERSPERGER: You've said the most valuable resource a patient has is time. And that story so expertly shares that. We certainly waste a lot of time in the healthcare systems around the world. There's a lot of waiting. There's sharing of information, waiting to get that information shared, updating the information once it is shared.

Is AI finally going to be the thing that gives patients more time? Do we need more people like you? Or do we need more AI to help people like you? Or is just AI the thing?

STACY HURT: Well, that's very kind and I would say we need both. But certainly, I hope so is my short answer. AI is certainly not here to replace humans. I believe that AI is here to enhance human decision making.

So if we take the case that I just talked about with this patient and the fact that she had to get to this point where she needed a second opinion, could artificial intelligence have detected a pattern in her treatment that she was exhausting treatment option one, and treatment option two, and now she was on to her third?

Could AI have sped that process up to say, hey, you're failing certain treatment options, you need to get a second opinion sooner than she did. Could AI have sped up that process, and in fact, saved her some time, given her some time back, et cetera? I don't know. But that's a scenario where I see AI helping.

Also, you look at treatment patterns. Again, so can AI detect a certain treatment or a certain incident algorithm, whereby we could avoid an acute event? Could AI pick up certain amount of acute episodes that are leading to a hospitalization, and in fact, avoid that hospitalization, avoiding cost, avoiding time out of a patient and family's life. I hope so.

Another thing I'm really optimistic about with AI is sensors and wearables. And everybody these days has a smartphone and has an app that can capture data. But again, how can we use that data into our everyday lives to improve our health, and again, get us at our personal best and avoid these sort of events? But for sure, AI is a tool. And AI can enhance this decision making.

I reflect on a story that I did. The San Francisco Chronicle interviewed me for an article before I was with Parexel. So let me be clear, this was when I was back in my freelancing days. And they asked my opinion on end of life care. And in fact, if a patient was ending nearing the end of their life and artificial intelligence sort of scanned their chart, and it would trigger an end of life decision, how did I feel about that as a patient advocate? How did I feel about the ethics and integrity of that?

And my comment was that I was in favor of it because too many times, I was advocating for families that didn't have those conversations, that weren't prepared for those end of life conversations. And the entire family suffered. And again, if AI could help avoid that, I think that that's a great use of it. And a great way to, maybe not give more time back to that family, but certainly enhance the quality of that time together and not leave anybody in the lurch on that. So yeah.

ALEX MAIERSPERGER: I love the we need both story of we need the people there holding your hand. And we need the AI there helping you have the best information at the right possible time, and scanning through the stacks of information to make sure it's surfacing what we need.

You talked about your time pre-Parexel. Now your time at Parexel, so survivor, mom, caregiver, advocate, in healthcare, we talk a lot about whole person care and bringing your whole person. I think we can coin a term about you as whole person employee. And so you bring all of that expertise to Parexel. As Chief Patient Officer, what does the Chief Patient Officer at Parexel do?

STACY HURT: Well, that's the beauty of being the Chief Patient Officer is that-- or maybe the not so much the beauty, but the flip side of it is that there's no solid line between my work and my life. My work and my life are kind of one. But to me, that's the best part of it.

And certainly, being Chief Patient Officer at Parexel is my dream job. And I'm really proud of the fact that to my knowledge, Parexel is the only CRO, Clinical Research Organization, with a Chief Patient Officer. So we're very proud of that fact. And we're very proud of the fact that when we say that we are patients first and that we are patient centric, we put our money where our mouth is by appointing a top leadership executive into this role.

And what I do as Chief Patient Officer, I am the voice of the patient when the patient's not in the room. I am the champion of patient needs, of patient rights, of reducing burden for patients. So internally, I help drive our patients first core value and our patients first culture. I'm executive sponsor of a number of our employee resource groups.

The one that I would say I'm proudest of is our ParAbility employee resource group, which supports our colleagues with disabilities, whether that be non-apparent disabilities or disabilities, and again, helping them to show up at their personal best and make sure that they're supported.

I'm also executive sponsor of our patient community, which is colleagues, like myself, who have a story as a patient, or a caregiver, or survivor. And we can help channel those stories into our company strategy and into our clinical trial design to make sure that it's the least burdensome it can be for patients and caregivers.

I'm also executive sponsor of our patient advocacy groups, as well as our site advisory council, bringing the patient voice and the site voice together. So I get to do all of those things internally, which I love. And then I'm also external facing with customers and keeping our customers accountable to, at the end of all of these patient trials, or at the end of all of these clinical trials, is a patient, is a family, is a caregiver.

And remembering that the ultimate end user of clinical trials is a patient. And keeping those needs, whether they're logistical, financial, educational, psychosocial, those needs of the patient are all paramount into enrolling patients in clinical trials, keeping them in patient-- in clinical trials, and really, letting them know what they're getting into, and motivating them to do this, and just making sure, again, that they're at their personal best.

So it is my dream job. Like I said, it's the culmination of everything that I've been through, both professionally in my 25 plus year career in healthcare, as well as personally as a caregiver to my son with a rare disease, as a stage IV cancer survivor, and as a patient advocate. And I have the best job at Parexel. I'm biased. But I think it's true.

ALEX MAIERSPERGER: I loved hearing the word slip of patient trials instead of clinical trials. It's such a-- it brings, really, the patient to the forefront of just it's so ingrained in your mind. I think there's probably other companies out there that will start to copy that and will be better for it.

STACY HURT: I hope so.

ALEX MAIERSPERGER: One of the things you've championed is that patients own their data, or that patients should own their data. It is really hard to own or store our own data right now. It's often in clinics scattered across the country or in different places across the world. Is this a future thing that we have to solve? Or are there ways that we can compile, and store, and own, or take control of our own data now?

STACY HURT: Yeah, this is absolutely a now thing. There are so many things that we can do right now to give patients control over our data. I get to say our because I'm a patient myself. So granted, we don't have a national data privacy security law. And there are a number of states that do. We don't have one nationally.

But right now, the way I look at it is this is an educational problem to solve. So what do I mean by that? So we know by the Cures Act, that that made real-time data available to patients. That patients in our portals would have access to our test results, and different scans, et cetera, real time. So we need more, I would say, patient navigators out there to support the real-time return of this data.

So it's out there. We have a right to it. Even despite a number of organizations trying to block that real-time access, it should absolutely happen. However, there should be more supports in place for patients how to interpret those test results. And I do understand how those could be misinterpreted, and how-- I've been there myself, where I've gotten test results in my portal. And I'm like, what does this mean?

And I'm freaking out. And I'm flipping out about it. And then my oncologist calls me and says, this is nothing to worry about. Calm down. So I think that the access to the data should be commensurate with the support.

Second, I think that we have a real opportunity with biomarkers, and biomarker testing, to drive treatment options. So what do I mean by that? So if there's a mutation on a specific tumor, so this is-- a great example is in lung cancer. So different like ALK mutations, and then actioning those mutations for immunotherapy.

So my best friend has stage IV non-small cell lung cancer. And she never smoked, marathon runner, et cetera. When she was diagnosed down at-- through Emory, her physician team was pushing her into chemotherapy, like start chemotherapy.

And I was the one, as her advocate, who said, just wait for your biomarker results because this could completely change your treatment paradigm. If you have an actionable mutation that they can do immunotherapy for, which is much less toxic and burdensome than chemotherapy, this is going to completely change your treatment trajectory.

She didn't know that. She's an attorney. She's like top 10% of probably knowledgeable people. And it took me interpreting that for her and telling her about that. So that was data that she had access to that could empower her treatment journey to be better for her.

And so if we can make biomarker testing universal, if we can get it covered universally by insurance companies, educate patients on why that biomarker testing is important, how they can use those results in their treatment. Those are things we can do right now. And we don't need data privacy laws. That is called democratizing the data, getting it into the patient's hands, to empower us to make treatment decisions. And that's something that we can all do today.

ALEX MAIERSPERGER: Incredible. I feel like I need to go hold a picket line, or hold a sign of biomarkers-- getting biomarkers available, and covered, and really actionable advice. And we'll ask a few more questions around some of the expertise that you bring and what we can do to be healthier in our own lives and what we can do if we face health challenges.

But for now, we're going to jump into a speed round. And so we're going to get to know you some fast paced answers here. What is the favorite app on your phone?

STACY HURT: Yeah, so it's probably the Weather Channel. I am just really a freak about weather. I live in Pittsburgh. And the weather really kind of controls everything, especially, I think, for our family, taking my son out in his wheelchair and everything, I have to be really conscious of the weather. So I'm always checking out the Weather Channel. I mean, sadly, probably Facebook too. But admittedly, it's probably the Weather Channel. Yeah.

ALEX MAIERSPERGER: I love that. Are you a morning or night person?

STACY HURT: Yeah, neither. I'm a midday person. But no, I would have to say I'm a night person because I'm definitely not a morning person. I definitely have to have my coffee in the morning. And nobody talks to me in the morning. They know that, not to talk to Stacy in the morning. So I would have to say a night person. I come alive at night.

ALEX MAIERSPERGER: Do you do breakfast or do you have a favorite breakfast food? Or mornings are so bad, you don't eat?

STACY HURT: Great question. With my coffee, I usually have one of those Belvita biscuits, either brown sugar, cinnamon or blueberry. That's sort of my go to. And whenever I go to conferences, I always pack those Belvita biscuits and have to have my coffee. So yeah, I would definitely say that my morning routine helps with me getting over my hatred of mornings, for sure.

ALEX MAIERSPERGER: Which would you choose? Mountains or beaches?

STACY HURT: Beach, easy. That's the easiest of these questions. Beach. Not my family, my family's not beach people. But your friend Stacy, beach, 100%

ALEX MAIERSPERGER: All right, you're invited. You're invited to the beach trip. And possibly the most important of these questions is what is your favorite ice cream flavor?

STACY HURT: Graham Central Station. If anybody has-- you can Google it. If you've not heard of Graham Central Station, it will change your life. It is delicious. It's Graham flavored ice cream with chocolate flakes. And it's so delicious. And when I'm not in the mood for that, it's going to be cake batter. So yeah, that's where I stand.

ALEX MAIERSPERGER: In my judgment of people based on their ice cream flavors, you are top tier cake batter and Graham Central Station, I think you're definitely on to something.

STACY HURT: Perfect.

ALEX MAIERSPERGER: You're off the hot seat on the speed round. We got some more hard-hitting questions for you. What advice-- or you, your son, your best friend, your neighbor, you've shared, they've all faced significant health challenges and all have faced the significant barriers that the healthcare system can often throw at you, including medical mistakes, and really, all the ills of the current healthcare system. How have you maintained optimism? Or how do you feel that optimism that we're going to get to a healthier future?

STACY HURT: Well, certainly, I'm not going to downplay the fact that there have been a lot of recent decisions that have made patients uneasy and caregivers uneasy. Those of us in the disabilities community, those of us in the cancer research community, so that has really heightened our anxiety.

But with every challenge, there brings an opportunity. And again, I get back to empowering ourselves with our data, with information, and really taking charge of our health. So in terms of remaining optimistic, I don't like the alternative because I don't like to think that we should be negative or have no hope.

I'm just going to go back to a couple stories. And when I was diagnosed, it was very bleak. I was covered with cancer. And the first thing that I did was I went out to the internet. And I searched for colorectal cancer support groups.

And I was fortunate to get into a private Facebook group. And patients were in there kind of talking about our disease and sharing our different diagnoses. And there were two patients in there, and I'm just going to call out their names, because I love them both, Richard Ju and Don Iker.

And they both had stage IV colorectal cancer. And they were both doing very well. And they were beating it into the ground. I contacted both of them. And I said, what are you doing? Because I want to do exactly what you're doing. And they were my North Stars.

And I followed to the letter what they were doing. They're still both alive and well. I'm still alive and well. And I just think that need that person. You need that person whose story that you can follow, that you can have hope with.

And I always said, if I'm going down to this disease, I'm going down giving it all I got. And I sure did. I researched everything, changed my diet, changed my lifestyle. And did everything that I could. And I came out on the other side. I was very lucky.

But I just think that we need to control the things that we can control, that are within our control. And that's really what should drive our hope and our optimism is knowing that we're giving it all we've got. And that every day, we're getting up and seizing the day, and seizing every opportunity in front of us.

ALEX MAIERSPERGER: I loved hearing their stories, and your story, and seeing the smiling face, and coming out on the other side of it. What advice do you have for listeners facing health challenges? There's some commonality of-- that's applicable to all of, is it always get a second opinion? Always use a patient advocate? Reach out to someone? Make a will? How can we set ourselves up for health success in the face of health challenges?

STACY HURT: Yeah, Alex, I would say D, all of the above. I gave that earlier a story about being prepared for end of life. So making a will is certainly top of that list. And making sure that you and your family are prepared for end of life. So definitely that. Definitely taking charge of your health and doing everything that's within your control.

I would be remiss if I didn't say, as a colorectal cancer survivor, to get screened. If everybody listening to this is 45 and older, make sure you talk to your doctor about getting screened for colorectal cancer. A lot of options. If you're afraid, reach out to me directly. You can find me. And I'll guide you through it.

So taking charge of your health, in terms of a patient advocate, I had one myself. And I'm going to call her out again. Her name is Amy. She knows who she is. And she's a stage IV breast cancer survivor. We've known each other since we were five. And I would say if I wrote a book, it'd probably be everybody needs an Amy.

Because Amy is a physician herself. And she guided me through the process because a lot of times, as patients, we don't know what we don't know. We don't know which questions to ask. And we're fortunate with the internet now that we can go out there and we can research these things and know what to ask.

But I would say, don't be afraid to get a second opinion. That's another thing that you mentioned that's so important. And I know so many of us, particularly those in underserved areas, are intimidated by the healthcare system, are afraid.

But it is well within your right to ask for a second opinion, especially if it's a complicated diagnosis, a rare disease diagnosis. You can absolutely ask for a second opinion. And I would add onto that, I always tell patients, trust your gut. If you feel like something is wrong, it probably is.

I've talked to so many patients who have been misdiagnosed and dismissed in different things they've brought up. But really, if you're listening to your body and you feel like something's wrong, it is. And trust that. And keep pushing until you get an answer you're satisfied with.

And that's another place, maybe, where AI can help us, where technology can help us is getting to those diagnoses faster, giving that time back to patients, reducing that white space in between I don't know what's wrong, and getting a diagnosis, and getting a plan. So push for those answers. You're well within your rights to do it.

ALEX MAIERSPERGER: You said if I write a book. And I think I speak on behalf of all listeners that were waiting for your book. And you've given us so much expert advice on where to go, and who to go to, and how technology is changing clinical trials, how it's changing your ability as a patient to find information or to connect with people. And so really incredible, really hopeful, really excited to see you smiling and thriving. And thank you so much, Stacy, for being on the Health Pulse podcast.

STACY HURT: Thank you for having me. And everybody out there, thank you for listening. Thanks for what you do for patients and caregivers.

ALEX MAIERSPERGER: Thank you for listening. If any of you know where I can find Graham Central Station ice cream, or if you'd like to join us as a guest, please email us, thehealthpulsepodcast@sas.com. See you next time.

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Today you'll learn, as a patient-- first take. What is happening? It was the garbage truck, but it should be gone. I almost said rememberized. That would be good. Now I've got it, memorized. Rememberized. Sweet.