Ep. 187: Maintaining Humanity in the Age of Digital Medicine

As health care advances in the digital era, how do we ensure we don’t lose the human touch? Jennifer Goldsack, MChem, MA, MBA, OLY, founder and CEO, Digital Medicine Society (DiMe), and a former Olympian, discusses the promise of digital medicine, the ethics and trust surrounding health data and why keeping humanity at the center of health care innovation is essential.

Watch the episode on YouTube.

Featuring: 
Jennifer Goldsack, MChem, MA, MBA, OLY, founder and CEO, Digital Medicine Society

Host/Producer: Carol Vassar

Views expressed by guests do not necessarily reflect the views of the host or management. 

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Transcript

Announcer (00:00):

Welcome to Well Beyond Medicine, the world's top-ranked children's health podcast, produced by Nemours Children's Health. Subscribe on any platform at nemourswellbeyond.org or find us on YouTube.

Carol Vassar, podcast host/producer (00:12):

Each week, we'll be joined by innovators and experts from around the world, exploring anything and everything related to the 85% of child health impacts that occur outside the doctor's office. I'm your host, Carol Vassar. And now that you're here, let's go.

MUSIC (00:30):

Let's go, oh, oh.

(00:33):

Well beyond medicine.

Carol Vassar, podcast host/producer (00:36):

We're at Health in Las Vegas. And I am so glad to have the dynamic Jennifer Goldsack with us. She is the founder and CEO of Digital Media Society, which is also known as DiMe. She is a former Olympian. I guess once an Olympian, always an Olympian, right?

Jennifer Goldsack, CEO, Digital Medical Society (00:53):

That's right.

Carol Vassar, podcast host/producer (00:54):

So, an Olympian in rowing, I believe?

Jennifer Goldsack, CEO, Digital Medical Society (00:56):

Yeah, that's right. I was in the two women boat in Beijing in 2008.

Carol Vassar, podcast host/producer (01:00):

Still a world record holder?

Jennifer Goldsack, CEO, Digital Medical Society (01:02):

Not anymore. It has since been broken, but that's terrific to see the sport moving in the right direction, so I love to see it.

Carol Vassar, podcast host/producer (01:08):

Not too many people can say they're an Olympic world record holder or a world record holder of any kind, but I digress. We're here to talk about digital medicine. And one of the things you have talked about is the gadgets that we all have. I've got one on here right now. It's probably keeping pace with my pulse and my high blood pressure and all of that. You've said that it isn't about the gadgets, digital medicine. You have said that it's about evidence, ethics, and trust. How do you define digital medicine today? And what's changed since you founded DiMe?

Jennifer Goldsack, CEO, Digital Medical Society (01:45):

It's such a good and timely question. So, when we founded DiMe... And just so everyone listening in has a clear idea of what we're talking about when we talk about DiMe. We are a global nonprofit. And we exist essentially to support those brave innovators, whether it's on clinical teams, whether it's technologists, who are really trying to redefine healthcare in the digital era, who are really thinking about how do we drive towards a sustainable future using these powerful new tools in the toolbox. So, that's our role in the industry. And when we were founded in 2019, those innovators, whether clinical or technical, they were a small cohort within an enormous and complex industry. We wanted to support them. We believe that digital should not be an edge case. Things have changed dramatically in just six years. This is now big H healthcare in the digital era. And the best analogy I can give you is there's no jobs in digital marketing anymore. It's just marketing.

(02:48):

And I feel like healthcare is the same. It's healthcare. Only we are now reliant and generating enormous flows of data from inside and outside the clinic. And with the appropriate permissions, it doesn't live in a manila folder in a file cabinet anymore. We should be able to use and reuse it. We have this incredibly powerful compute capability to be able to analyze these enormous tranches of data. We have communication technology and we have all of this connectivity to put people together, to use information from that data and those analytics to transform the way we care for people.

(03:26):

So, that was a long answer, but hopefully it's useful and powerful to think about how far we've come in just six years and to think about how the technology has evolved enormously. And so, for me, it's not about the widgets. You're exactly right. It's about the data they generate, the insights we can glean. And most importantly, how we respond to them.

Carol Vassar, podcast host/producer (03:45):

When you founded this in 2019, you could not have imagined what 2020 was going to bring. Did you think about that? In retrospect, do you think about how it may have turbocharged the digital phenomenon and the growth of digital health across the world?

Jennifer Goldsack, CEO, Digital Medical Society (04:04):

I think about it often, and I think you are exactly right. So, my background has always been at the forefront of the slow introduction of different digital elements into healthcare. And in founding DiMe, it was because I deeply believed that we had an industry that exists to care for people that was already in trouble. We've been trying to do things like bend the cost curve, improve access, improve equity for decades. And despite enormous amounts of effort, we're really struggling to do that. And in some cases, we're moving backwards. I've always believed in the promise of digital to be transformative, not as a silver bullet, and it's not going to change everything, but these are powerful new tools in the toolbox. But you are exactly right, that through the pandemic, things changed dramatically. That we were a small nonprofit. We were doing great things.

(05:00):

At the time, just before the pandemic hit, we had just published a evaluation framework for sensor-based digital health technologies. So, exactly the kind of technology you're wearing on your wrist right now and I'm wearing on my hand right now. And that's been adopted into FDA guidance. That's the kind of work we were already doing. But when the pandemic hit, and we suddenly realized that we had to be able to care for people without pulling them into the clinic. And that we had to be able to monitor people, we had to be able to predict risk. We had to be able to communicate with people regardless of where they were.

(05:33):

I think there was this enormous moment where I'm incredibly proud of my colleagues at DiMe. We were able to step up. We were able to meet the moment. We were able to support, just as our mission tells us we must, those innovators trying to do hard things to improve the way we care for people. But what's really interesting is when we started DiMe in 2019, I would argue that the research community, and in particular the life sciences, were much more advanced at using these technologies.

Carol Vassar, podcast host/producer (06:03):

Really?

Jennifer Goldsack, CEO, Digital Medical Society (06:04):

So, you could talk to pharma, and they were very excited about things like digital endpoints and decentralized clinical trials. But if you talk to someone in a clinic, someone who was running a hospital or thinking about ambulatory care, no one was really thinking about remote patient monitoring. There were a few places where you might find virtual cardiac rehab, but it was further behind in healthcare delivery. Everyone sprinted. And the pandemic was catalytic for digital and for going beyond the walls of the clinic, whether in research or whether in care. But what I've seen subsequently is healthcare delivery has really embraced the promise of digital. They've recognized that there are different workflows that we can create.

(06:50):

We can overcome the maldistribution of clinicians and the patients who need them the most. We can think about using virtual approaches to load balance across a healthcare system that's straining under perhaps clinician shortages. We can be really smart at how we use clinician time. We can try and reduce burden on patients. We can use analytics on, in some cases, the 18 years of longitudinal data that we have in some places from the EHR. This has been embraced in healthcare delivery. And I see them absolutely flying ahead, supercharged more recently by AI. It's not that pharma isn't using AI or that they don't continue to be interested in digital endpoints, but I saw a little bit of regression to the mean after the pandemic in ways we did not see in healthcare delivery.

Carol Vassar, podcast host/producer (07:34):

As we talk about healthcare delivery, it sounds like you're talking work smarter, not harder. Take these digital tools and apply them to the patient in front of you. But part of the work that DiMe is doing is keeping that patient front and center. Talk about the human aspect of all of this.

Jennifer Goldsack, CEO, Digital Medical Society (07:52):

I think one of the greatest potentials of the digitization of healthcare is to build care around the patient and not the clinic. So, I'm going to say one thing that I think is really important. Keep in mind that I said the clinic, not the clinician. Clinicians are always going to be really important in driving healthcare. They may not be part of every workflow. We may be able to think about how we use tools to monitor, manage, lower acuity patients. But I don't see a future of healthcare where the clinician is incredibly important to decision-making, to oversight, to true care. It's an industry that exists to care for the patient, but can we build care around the patient and not the clinic, that brick and mortar site? That's what I think a truly successful healthcare ecosystem looks like in the digital era. And one of the things I'm really proud of at DiMe is we have an absolutely exceptional patient in residence on staff.

Carol Vassar, podcast host/producer (08:52):

Really?

Jennifer Goldsack, CEO, Digital Medical Society (08:52):

So, she's part-time. Grace Cordovano. She is an extraordinary human. She has been a patient herself. She is a care partner. She provides, when she's not working with us, exceptional support to patient community. She's board certified. She works primarily with cancer patients. She does this day to day. And she brings those insights back to us. And she keeps us truly honest as an organization, that we haven't become overly focused on the technology or the innovation or even the system, because after all, it's a system that exists to care for people.

Carol Vassar, podcast host/producer (09:30):

It is all about the people, really, and all about the patients. And I think that's been part of... People who are attracted to working in the healthcare industry, no matter if they're clinicians, support staff like myself, leaders like yourself, it's ultimately about the patient. And I think that's really the theme within your Healthcare 2030 thesis. How far are we from that, from getting that patient-centered model and that digital model married?

Jennifer Goldsack, CEO, Digital Medical Society (10:01):

It varies. It's probably the best answer that I can give you. There are places, there are approaches, there are digitally-enabled workflows that I think do an exceptional job of reducing the burden on patients. Maybe reducing things like the risk of financial toxicity for a patient with a complex diagnosis, that make it possible for them to access care that they wouldn't be able to access otherwise. And there are sensational examples there. And it's the end of a long conference and we said that fatigue is the truth drug sometimes. So, then there's also tens of billions of dollars being poured into revenue cycle management. And it's not that that's not important. I understand the pressure that health systems are under right now. But when I think about where are we investing, especially in some of these really expensive AI solutions that require an enormous amount of data and dollars to train them, are we placing our chips in the right place to truly support the patient?

(10:57):

But you mentioned Healthcare 2030. And when you asked about digital medicine, you were asking about what's the trajectory been since we were founded at DiMe in 2019 and today. And Healthcare 2030 is our impact thesis to really make sure our healthcare ecosystem even exists and is capable of caring for every person by 2030. We look at some of the policy changes that have been made. We know we're looking at enormous reductions in Medicaid spending that is going to hurt healthcare systems and patients into the future. We can think about, at the same time, some really exciting priorities coming out of the administration.

(11:37):

They have recognized that data is currency in the digital era. They're talking about interoperability. They're talking about the importance of leveraging every tool in the toolbox, to make sure that we can care for people in an affordable way. So, the reason that we put the Healthcare 2030 impact thesis together was we really wanted to say, especially with the introduction of AI, especially with the administration's support of taking a data-driven approach to caring for people, this is a really important moment where we can either embrace and be successful in digitizing healthcare or we can simply add layers to the onion. We can invest hundreds of billions of dollars into these technologies. And truly, people are. And we can fail to do anything, other than nibble around the edges of what is a broken system.

(12:26):

And I don't say that to be critical of the humans who work in it. I am constantly in awe of our clinical care provider colleagues who do extraordinary things to care for their patients, but it shouldn't be that hard. We shouldn't be burning them out like this. And so, our goal with Healthcare 2030 is to say, the definition of success with hundreds of billions of dollars of investment into AI isn't better revenue cycle management or back and forth prior auth conversations between a bot at the payer and a bot at the clinic. Let's please not do that. We wanted to create a north star that was clear and everyone could drive towards. So, we wanted to talk about the definition of success.

(13:06):

What we believe is essential for healthcare to still be a viable entity in 2030, is we have to use all of our efforts and these tools to think about how do we move closer to prevention. So that we don't sit in the walls of the clinic, waiting for a patient to arrive already with symptoms, probably further along and more expensive than they would be had we actually anticipated their healthcare needs. And with all of the data and analytics, we can certainly do that. And speaking of those data and analytics, we also want to think more about personalization. And I've had a cancer diagnosis, had a late stage cancer diagnosis. And I have sat on the other side of the table from an oncologist who's taken a very data-driven approach to shared decision-making with me.

(13:53):

And then looked me in the eye and said, "But all of this data is about 80 year old men. So, this is nothing more than an educated guess." I've been there when a life or death decision is nothing more than an educated guess. We have to get better than that for every single person that our healthcare system exists to care for. We have to have the courage to think about health outcomes. We are a system that has used process measures as a stick to beat ourselves with for decades. And it limits clinicians, it limits innovation. And I don't think it's the right way to be effective or efficient in caring for people. We can measure health outcomes. We have more data than we know what to do with. We have to have the courage to hold ourselves to that standard. And then the final piece, which perhaps is redundant or obvious, is the sustainability piece.

(14:43):

And that sustainability costs that society can actually afford, costs that a family can afford. We have to think about sustainability of the workforce. We mentioned that we see our clinical colleagues dropping out at rates we've never seen before. We have to think about sustainability. There has to be commercial viability of all of this as well. The way that healthcare exists in the United States is that it's for profit. And so, we have to figure out how do we achieve that double bottom line, sensational health outcomes that are personalized for every single person that our healthcare system exists to care for and making it work financially. So, that's what we've put on the table with Healthcare 2030, and we've had a tremendous response.

(15:25):

It's shaping our portfolio of activities, and we've got great feedback that it's helping innovators. And frankly, even folks that perhaps don't consider themselves an innovator. A chief financial officer at a small rural healthcare system who knows that they have to do some extraordinary heroic work over the next couple of years to keep the doors open, they have limited places to invest in order to make that happen. How can this framework help them think about where those dollars could go to do the greatest good, to give them the greatest opportunity to keep those doors open? That's why we put it out there.

Carol Vassar, podcast host/producer (16:02):

There's so much in what you just said for me to chew on. Two things, really, come to the fore. One, I'm hearing echoes of moving towards value-based care. Let's talk about how data can help that. And first of all, as we talk about data, how does DiMe work to make sure that it is remaining private to the patient, but also benefiting the patient and ultimately the outcomes for that patient and for public health in general?

Jennifer Goldsack, CEO, Digital Medical Society (16:34):

Oh, and there's a lot in that question.

Carol Vassar, podcast host/producer (16:36):

That's a loaded question.

Jennifer Goldsack, CEO, Digital Medical Society (16:37):

No. But let's dig into it. It would be fun. So, I think there's a couple of things as we think about moving towards value-based care, performance-based reimbursement, is there are different therapeutic areas, different diagnoses. Well, we have a pretty good sense of what good looks like. We have data to support it. And there's no reason why we can't move in that direction towards value-based care, towards performance-based reimbursement right now. There are other areas where we don't have great data, and I'll give you an example. If I was running a behavioral health clinic or if I was a mental health provider, you could not convince me under any circumstances to enter into a risk-based agreement for reimbursement.

(17:23):

The measures that we have in mental health are so bad. We have these blunt instruments, these like, "Here, let me give you a crappy clipboard and fill out this PHQ-9. And we will hinge all of our decisions about your risk level, where we think you're going to go, how well you're responding to a variety of different treatment options, all on this blunt instrument." I would not enter into that kind of arrangement. So, there's a couple of things we're doing at DiMe. When there are really robust measures, we do a lot of storytelling. We have case examples. So, I will think about colleagues that we have, an organization called Oshi Health. And they take on an awful lot of risk. They are a virtual-first GI care provider and they do sensational work.

(18:08):

They have case examples of where they've gone fully at risk to care for folks with a variety of different GI diagnoses. We know that there aren't enough GI physicians. They're able to meet people where they are. They're able to supplement clinical care with nutritional coaching, behavioral health coaching, and they're able to have sensational outcomes. They can measure them, they can deliver them, they're doing really well. So, we'll do storytelling around that, including examples of how they keep that patient data really safe and secure, even though they're using lots of different modalities.

(18:42):

Then in the example, something like mental health where we know the measures aren't good enough yet, either for optimized clinical decision making or reimbursement decision making. That's where we'll actually come in and start to think about how can we use the new tools, like the one I'm wearing on my hand and you're wearing on your wrist, to actually capture the most important elements of depression or anxiety or mild psychosis. And actually, start to generate those measures in a way that's low friction. Ways that allow us not just to have these snapshot moments of data and what are really complex diagnoses, but almost continuous monitoring. So, we know when someone's doing well, we know when someone's at risk, we can intervene accordingly. So, those are the two different ways that we interact with the future, which we hope is much more value-based in terms of reimbursement.

Carol Vassar, podcast host/producer (19:35):

I want to talk about the pediatric segment. I know that kids are not necessarily the ones that have been tapped into in terms of wearables or with digital health tools. What can we do to make pediatric digital health a priority, rather than an afterthought?

Jennifer Goldsack, CEO, Digital Medical Society (19:56):

I love that you've asked this question. Let me actually start by sharing a few statistics that continue to blow my mind. If we actually look at the amount of investment that's gone into pediatric digital health solutions, it's about 3% of total investment into the digitization of healthcare. And if you think about the proportion of overall spending that goes on pediatric care, and if you think about the proportion of the population who are children, I mean, that's just an abomination.

Carol Vassar, podcast host/producer (20:28):

Yeah. It's out of whack.

Jennifer Goldsack, CEO, Digital Medical Society (20:29):

It absolutely is. And it's not a small market. It's not one that should be this underserved. And to talk in very economic or financial terms, there hasn't been a digital health startup focused on children that's made what we would describe as a successful exit, that has managed to go public or get acquired. It is still a reasonably immature part of the digital health landscape. This really bothered us. And this data that I just shared was captured by our colleagues probably about 18 months ago, our colleagues at Rock Health. And so, we partnered with them, we partnered with colleagues at Boston Children's. We brought together true experts from across pediatric medicine through digital innovators. And we actually put together a playbook for pediatric digital medicine to really help think about three different things. And it's always dangerous to number something early in the morning.

Carol Vassar, podcast host/producer (21:27):

Yeah. Understood.

Jennifer Goldsack, CEO, Digital Medical Society (21:28):

So, let's see if I can hit these. So, the first is, how do we actually think about the complexity of building digital solutions that are fit for purpose for children? Whether it's the fact that if we wanted to make a tool or a technology, children grow over time. How do we actually think about what's appropriate to ever burden a child with? How do we think about, what are the problems even to solve for? So, that was one part of what we put into the playbook for pediatric digital medicine. The second piece was workflows are often quite different. In pediatric care, the EHR is most likely different. How do we actually think about not burdening pediatricians and the care teams around them? How do we actually educate the innovator market on what the workflows look like, on where the greatest pain points are, on what the considerations are to actually make this work within the existing workflow, so that truly the digitization is supportive and not burdensome?

(22:26):

And then the final piece gets into, and this has been a theme of some of your questions, the privacy and security pieces. Your watch, my ring, tethers to our phone. We shouldn't expect-

Carol Vassar, podcast host/producer (22:40):

A child to be-

Jennifer Goldsack, CEO, Digital Medical Society (22:41):

... a child to have a phone or to have that autonomy or access to their data, or to be the one to go through the terms of service and actually say, yes, this is a product I want to interact with because I have understood how my data is used. How do we think about consent, ascent? How do we think about maybe a child who spends a week in one home with one parent and a week in another home with another parent? These are the sorts of things that we actually need to think about. Those are also some of the real opportunities for digital. So, in the playbook, we grapple with all of that and provide clear recommendations and checklists, tools, case examples that the innovation community can look at to say, there is a market here.

(23:22):

There is a market for the children that our industry exists to care for that has been untapped. So, from a commercial perspective, it's sufficiently big that you should be going after it. But more importantly, this is a part of our healthcare system that is under enormous strain right now. We know that there is a maldistribution of where we see wonderful pediatricians and where we see the children that need them the most. We know that it is incredibly burdensome for a mother of a child with terrible asthma to actually get their child into the clinic, and to go through the traditional brick and mortar workflows that we have now. There are the tools out there that we can do much better with this. We've got to deploy them. So, we've seen tremendous interest in access. If we look at our access numbers of all of these resources that we put out, it's really exciting.

(24:15):

And I'm hoping that quite quickly we start to see that there's case examples and new stories cropping up that as a result of this work. Innovators have lent into this space and they've done it without asking every pediatric children's hospital to help them to partner, that instead they're able to deliver them a solution, instead of a request for help.

Carol Vassar, podcast host/producer (24:35):

Why do you think the innovation is behind in the pediatric space? Is it people are avoiding that space because maybe they don't see opportunity or because children, well, they're usually pretty well? We don't need to worry about them until later. Why aren't the innovators coming into that space for the pediatricians and for the pediatric digital healthcare?

Jennifer Goldsack, CEO, Digital Medical Society (24:58):

I think because it's hard. And I think for anyone who practices pediatric medicine, they would agree that it's hard. It's not a tiny market. And I'm, again, towards the end of a long conference, so I'm going to be a bit punchy. It's probably easier to get an investor to write a big check for some nonsense longevity medicine than it is for pediatric medicine.

Carol Vassar, podcast host/producer (25:21):

I like your honesty. I really do.

Jennifer Goldsack, CEO, Digital Medical Society (25:24):

I think it's easier to make that pitch. I think it's easier to talk about out-of-pocket care, as opposed to it's an entirely new workflow. Anything you do in pediatrics is unlikely to scale into the adult population. I think it's hard. And it's a shame, because there's a real market there and there's a real unmet need. And that opportunity to deliver on that double bottom line is just enormous.

Carol Vassar, podcast host/producer (25:46):

It doesn't sound like wearables are really applicable to kids, until they get phones. And some get phones at eight, some get phones at 17, so it's going to vary. How do we think about getting that information otherwise? EMRs, is that a place to get the data on kids, even if it's de-identified?

Jennifer Goldsack, CEO, Digital Medical Society (26:07):

I think that there are some opportunities for what I would describe as sensor-based measures, whether it's wearables or not. So, first of all, I'm going to give you a, not throwaway, but perhaps a lighter-hearted example, and then we'll go ahead and dive into some of the other pieces. My sister recently had twins.

Carol Vassar, podcast host/producer (26:27):

Oh, congratulations.

Jennifer Goldsack, CEO, Digital Medical Society (26:28):

Thank you. They are delicious. And my sister was asking me about all these different technologies that exist. There's a smart sock that she could put on them-

Carol Vassar, podcast host/producer (26:36):

A smart sock.

Jennifer Goldsack, CEO, Digital Medical Society (26:36):

... to get their temperature. There are bed mats. There's a different software package that she could've got in their baby monitors to alert her to all of these different sorts of risks. And all I said to her was, "I feel like you're going to be sleeping with one eye open before you burden yourself with all of these additional data. And when we don't really know what it means, if it's relevant. I wouldn't, if I were you." And so, those are all the sort of health and wellness tools, and there's actually a remarkably big market for that. Some of the examples she was giving me, I couldn't believe it. But getting back to, if we had a child who was battling epilepsy. And I have a friend, her son was diagnosed with epilepsy. And I think he was five when he was diagnosed and he had to go into the hospital.

(27:26):

He had an array of sensors put on his head. He got given this enormous backpack. And there was a moment where he literally fell on his back like a little beetle and couldn't get up. It was ridiculous. It had a half hour battery life and the rest of the time it had to be plugged in. And the length of the cord was about six feet, so he spent 24 hours within 10 feet of a plug.

Carol Vassar, podcast host/producer (27:44):

So, a catheter.

Jennifer Goldsack, CEO, Digital Medical Society (27:45):

And I just thought, this is absolutely ridiculous. There are these headbands, there are these sensors. So, there are sleep mats that you can put under the sheets. There are ambient technologies, like the video technology or even a smart speaker, your Alexa or whatever brand it is that you choose. I'm not saying the S-I-R-I word, because I assume we all have a-

Carol Vassar, podcast host/producer (28:05):

We don't need everybody's phones going on.

Jennifer Goldsack, CEO, Digital Medical Society (28:07):

Exactly. Everyone's phones to go nuts. So, these are the sorts of data that I think we can collect. There are little patches that you could think about if you had a baby who was discharged with a NICU, from the NICU or a child who had had heart surgery and we wanted to do ongoing monitoring. There are little patches and things we could use. We could tether it to a parent's phone. There's even things like smart inhalers now that I think are really powerful.

Carol Vassar, podcast host/producer (28:29):

Really?

Jennifer Goldsack, CEO, Digital Medical Society (28:29):

Yeah. So, you can actually start to monitor how often someone is using a rescue inhaler. And then that can give you a sense of whether their preventative is working. There are really quite powerful apps that triangulate that data based off location. And they don't record your location, they geofence it. They immediately ping your GPS against local air quality, and then they record the local air quality only. And then you start to get predictive risk for an asthma attack. And you start to think about, yes, these are the sorts of tools that perhaps we can and should be using in a pediatric population, but it's not as simple as giving that tool to you or I. We have to educate the parent and it can't be burdensome for the parent.

(29:14):

There's a big difference between whether a child is an infant, a child or an adolescent, where they are, where they are with their comfort level with these tools and technologies. We were just talking about measures of mental health and we know there's a mental health crisis. Even in our pediatric and adolescent population, do I want to slap a monitoring device on every child? No, I don't. I think that sounds awful. But at the same time, if we could get early signals about how well a child is sleeping, one who already has a diagnosis of depression, that's going to tell us a lot. If they have consistently bad sleep, we've got to be doing something about that because we know that puts them more at risk.

(29:52):

And so, this goes full circle on your question of, why aren't we seeing more in the pediatric population? Hopefully, some of the examples I just gave show that there's enormous opportunity, but it is hard. And the ethical piece I think is more challenging than most other populations, because it is a vulnerable population. We have to come in to care for patients, for children, and make sure that we aren't overly monitoring them. We aren't overly burdening the parent.

Carol Vassar, podcast host/producer (30:20):

Before we leave here today, and I hope you don't mind my asking this, you did mention earlier that you're on a cancer journey-

Jennifer Goldsack, CEO, Digital Medical Society (30:25):

I am.

Carol Vassar, podcast host/producer (30:26):

... right now. How does that change the way you look at the delivery of digital healthcare? If you have a better patient perspective or a different patient perspective?

Jennifer Goldsack, CEO, Digital Medical Society (30:41):

I'm not sure I have a different perspective, actually, but I have a sense of urgency that I... Let me try and pass this out in a different way. I think two things. So, first of all, I don't think that digital is going to be the solution to everything. And I got my diagnosis over the winter holidays. We're about 10, 11 months in at this point. If I think of those moments where I've really needed support, where things have been terrible and hard and frightening, there's been comfort in making data-driven decisions with my oncologist. Don't get me wrong there. But I remember being in the hospital, and I'd been in there for about three weeks and I have a GI cancer. And so, I hadn't eaten and I was like 40 pounds down on what I came in at. And I was just so sad and I was so tired and was so frustrated.

(31:31):

And I remember going for a scan, and coming back and a tech had changed my sheets. She already had the hot water running. She was ready to give me a sponge bath. She put a new gown on me and then she held my hand until I fell asleep. And I needed it. She knew I needed it. And there was nothing to do with technology that made a day that was awful so much better, and that kept me positive, and that kept me driving forward. And I've had moments like that throughout my journey. And I think, how are we using these tools and technologies to support these individuals? I want that human part to remain. It has to remain.

(32:10):

Healthcare is about caring for people. We have to think about the people. But I also knew that that particular tech, she'd confided in me. And when she wasn't working full-time at the hospital, she had a side gig providing night care for a local wealthy lady who needed additional care, who wasn't particularly kind to her. And I'm like, "It should be enough for this wonderful woman who provides extraordinary care not to have to work a second job." And so, then if I bring it back to technology, I think about, how are we creating efficiencies in this system? How are we creating a place to work that is actually sustainable, that recognizes the importance of humans?

(32:52):

And then the second piece, as I mentioned, is the urgency. When I walk into the infusion center or when I walk into the cancer center, I now know where the billing offices are. Trust me, I've spent enough time in there myself, having one fight or another, or what the heck is this $8,000 bill for miscellaneous? I mean, there's sorts of things that just should never happen. And I see people walking out in tears every single time I go. And I think about how are we using technology to create a system that is actually affordable, that is truly accessible. That is not going to cause someone who is already battling a cancer diagnosis to come sobbing out of the billing office.

(33:33):

These are the sorts of things I think about. And it's really focused my attention on let's not think about the digitization of healthcare, of nibbling around the edges of a system that doesn't work for care providers, whether that's the clinical care team or the care partner, that doesn't work for patients. And then if you talk to most CFOs, they'll tell you it's not sustainable. Let's actually think aggressively and with real intent about going after the biggest problems, have the courage to do it, and demand that these tools and technologies are truly transformative.

Carol Vassar, podcast host/producer (34:06):

I want to thank you for keeping the human in all of this. There are lots of AI solutions as we sit here in Las Vegas. But keeping that human perspective is so, so very important. Jennifer Goldsack, who is the founder and CEO of Digital Medical Society, DiMe, thank you so much. This has been a fabulous conversation.

Jennifer Goldsack, CEO, Digital Medical Society (34:25):

I've really enjoyed it. Thank you so much for having it.

MUSIC (34:28):

Well beyond medicine.

Carol Vassar, podcast host/producer

 You know, I'm not even sure the word dynamic does justice to the conversation we had.  Thank you, Jennifer, for a fabulous conversation during our time at HLTH in Las Vegas. This episode, of course is part of series of podcast episodes recorded in the fall featuring healthcare leaders from across various sectors speaking to the work they’re doing that positively impacts children’s health. 

We have a few more of the episodes recorded at HLTH to get to you in the coming weeks and months, so please check out this series and all of our podcast episodes on your favorite podcast app and smart speaker, the Nemours YouTube Channel, and on our website: nemourswellbeyond.org. Visit there to leave a podcast episode idea, a review, or subscribe to the podcast and our monthly e-newsletter. That address again is nemourswellbeyond.org.

Our production team this week includes Susan Masucci, Lauren Teta, Cheryl Munn, and Alex Wall. Video production by Sebastian Reilla and Britt Moore. Audio production by yours truly. On-site production assistance provided by Robbie Dorius and his team from HLTH. Thank you to them. 

I’m Carol Vassar. Thank you for listening Join us next time as we learn about a platform that uses gamification to help kids understand complex medical concepts and producers that they themselves may be undergoing. Until then, remember, we can change children’s health for good - well beyond medicine. 

MUSIC (34:28):

Let's go...Well beyond medicine.