The Next Big Thing in Health is a podcast where we explore the new big ideas that will help make health care more affordable, more available, and more effective.
AHIP President and CEO Matt Eyles and co-host Laura Evans were joined by Susannah Fox, principal of Internet Geologist, LLC, for a wide-ranging discussion on what being a caregiver means in today’s health system. They covered the intersection of technology and caregiving and touched on how employers can better support caregivers.
Eyles:
Hi everyone and welcome to the Next Big Thing in Help, a podcast from AHIP. I'm your co-host Matt.
Evans:
And I'm Laura Evans.
Eyles:
Today our guest is Susanna Fox, who served as Chief Technology Officer of HHS from 2015 to 2017, helping HHS harness the power of data and technology to improve the health and welfare of the nation. She is currently advising organizations on how to navigate the intersection of health and technology. One focus has been the power of connection among fellow patients and caregivers. Susanna, welcome to the podcast today.
Fox:
Thank you for having me.
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Eyles:
We are really excited to have this conversation and technology is such a critical enabler these days in healthcare that we're very excited to get with it. But one thing we have to sort of start with is we noticed that you list Archangel as one of your job titles on your CV. You got to share a little bit more about that one.
Fox:
Thank you. So after years of working in health and technology, I looked back at all the experiences that I've had and realized that the place where I think I learned the most about health care delivery and actually innovation is at the bedside when I was caring for my father during the last year of his life. And then for an elder cousin who was like a third grandpa to me. It was in doing that work, bedside medication management, managing between three facilities.
In the case of my dad who was going through cancer treatment, I realized that I wanted credit for that work. I wanted that to be reflected on my CV and on LinkedIn and so in I think it was 2017, I went to LinkedIn and I just tried to add caregiver to my profile and you might know this like when you add a new experience when you join a new company, their logo pops up or you add an education you know this the logo of that school a little box pops up. When I added caregiver to LinkedIn, it was just a plain anonymous gray box. And I just it frankly hit me in the gut and I thought God, isn't that symbolic of how caregivers are seen or actually how they're not seen and yet they are the glue of our health care system. They are the safety net that catches people when they fall. They're what often stops the machinery of health care before it can hurt their loved one. And yet we don't see them and they're not acknowledged.
So I went to my friends Alexandra Drane and Sarah Stephens Winnay, the cofounders of Archangels which is a company that's based in Massachusetts that's lifting up caregivers. And we talked about this and they created something called Archangels work where they actually created a really cute logo for LinkedIn, so that when you put Archangel in your LinkedIn as an experience, it pops up. And what they’re doing is helping people to think about how to express what people have learned as caregivers into talking points for a job interview, or experience that you can have as part of your resume. So that’s why I listed myself as a caregiver and I accepted my wings. I’m really, really honored to take on that title.
Evans:
I love that it’s so obviously non-traditional, but you’re right Susanna, it’s just there’s nothing more complicated. There are few things more complicated than trying to navigate the health system for whether it’s for yourself or for a loved one and it’s dizzying, and at a time that you're stressed out already and not feeling good. And kudos to you for taking that step forward. I'm curious first of all, have others followed your lead? Are you seeing more people kind of step outside of the box and say Yes, amen. I need to do this too.
Fox:
Yes I have and what we want to do is spark a movement, spark this movement towards owning that experience. I heard that a great way to put it that just like when an astronaut goes to space and comes back, there's still an astronaut when they get back to Earth and that's the way I feel about being a caregiver. I've had these searing experiences and it changed me as a person. It changed me as a researcher and as a healthcare strategist. And so I'm going to take on that role. I want everybody to do that, everybody who's had a caregiving experience, to own that work so we can start seeing people and giving them the credit for that work that they've done.
Evans:
Yeah, it's the real-life hands-on experience. So how has being a caregiver changed your approach to your work with health and technology organizations?
Fox:
For about 15 years before I took on the mantle of you know, what I would say is first chair, as a caregiver, I'd often been in kind of second or third chair as a tertiary caregiver for my grandparents, maybe doing one overnight taking them to the hospital if need be. When I was first chair when I was really at the bedside, and I was kind of in charge of care, what I noticed is that great product ideas, great process innovations, great new services and treatments were coming from my fellow caregivers, from the home health care aides, actually, that we were fortunate enough to hire to help us.
These ideas were coming from everywhere, at the grassroots and at the bedside, which actually matched the research that I've done doing field work in patient communities that there are so many great ideas that are coming from the frontlines of health care from patients and caregivers, which actually matched my experience in the federal government, too, were at HHS the office of the CTO.
Chief Technology Officer is an awesome title and it's the title that Todd Park originated. President Obama asked Todd to be the first chief technology officer at the U.S. Department of Health and Human Services. Really the title is more chief innovation officer. And what Todd created and Brian Civic expanded and I also expanded in my role was a way for federal employees at every level of this huge federal agency to feel like they could come up with an idea and maybe pitch it to the Secretary or pitch it to the head of their agency, which you guys might know this. It's pretty unheard of, for someone way down deep in the hierarchy. And that's the spirit that I'm bringing forward the spirit of, you know the can-do spirit of a caregiver who makes do with whatever they have. That's the can-do spirit of an entrepreneur.
Eyles:
Love the can-do spirit component. And I think we've all had to be caregivers in different times whether it's for a child, a parent, a friend, you know, sometimes we get to do it hands on and in person. Sometimes we have to do it remotely. I mean, I have some very elderly in-laws who are in the middle of the country, you know, very far away from us and from my brother-in-law and my sister-in-law and so we try to do what we can, as much as we can, what advice do you have to give to caregivers, especially those that might be listening?
Fox:
The first thing that I would do is try to find other people who are going through or have been through the same challenges that you're facing. As we know healthcare is so diverse. There's so many different ways to be challenged. And you need to find someone else, for example, who's in a clinical trial for cancer. How do I navigate that? How do I help my loved one navigate that that's really different than the day-to-day challenge of caring for someone with Alzheimer's or caring for a child with insulin-dependent diabetes? These are all incredibly complex challenges, and finding a peer mentor finding a — just in time — someone like you to help you kind of see down the path a little bit. So it's not all this dark maze that you're walking into. You want to call out and say, “Is anybody else in this maze? Does anybody have a map? Does anybody have a match?” And to try and bring your community into the isolation that you often feel as a caregiver? And Matt, I have to say just real quick, I've got a tool specifically for you, which is something called a care map, which is an innovation that came from a caregiver. Raj Mehta is the CEO of the Atlas of Caregiving. And he created this awesome tool where you literally draw a stick figure in a house, and then all around that, you list everyone who supports your in laws. Whether it's their clinicians who might be close by, whether it's the neighbor who can call you if they see something wrong, or it's all of the far-flung people who give emotional support. Once you've mapped that, two things happen one is hopefully you see the abundance. You see the abundance of care and abundance of love that surrounds your in laws. I've also seen it happen where you draw that map and it's pretty sparse. And then you say, Okay, we have, we have some work to do here.
Eyles:
Wow, I'm definitely going to look at that. I mean, one of the ways that we've tried to leverage technology is actually through a Ring camera so that we can see them. You know, an inside Ring camera. We have one outdoor too but just to see what's happening, you know with them at any sort of given point of the day, but I'm definitely going to have to look that up, so thanks.
Fox:
I am all in favor loving surveillance. Surveillance done out of love.
Evans:
Life 360, I recommend it.
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Eyles:
So we've all worked for, you know, different organizations, employers, some of which might be more progressive and engaged. These issues some which sort of know they exist, but don't really do anything to support employees, and all sorts of in between. How do we get employers to better support caregivers and recognize the important role that they play?
Fox:
A big challenge is you know, is holding on to the talent you have and also making sure that the people who are already working for you are working to their best ability. One of the findings of research that's been done about caregivers is that people will show up for work, but it's, you probably have heard the phrase presenteeism, you know, that that they're there, but they're not really there because they don't feel seen and they don't feel supported. So the first step for employers is to recognize that you likely have caregivers working for you.
So some data from Archangels, which has done this national research to measure the prevalence and intensity of caregiving in the U.S. 43% of adults are caregivers. And what's really interesting is that sometimes in the media we think about, we see images of caregivers that they all have, you know, gray hair you think of it as a spouse, and so it may surprise people to know that one in four caregivers are millennials. One and five are Gen Z. I would have counted as that, you know, in my early 20s, I was driving over from D.C. to Baltimore to take care of my grandparents when I could, learning, being an apprentice caregiver. 40 to 50% of caregivers are men. So I see you, Matt, I see you being a caregiver.
And you know, it's important to recognize that unfortunately especially the COVID-19 pandemic has really exacerbated the sense of isolation. And there are a lot of caregivers who are going through some really tough times in terms of depression. So 23% of all caregivers are in that sandwich generation. They're taking care of kids, and they're taking care of elders. And this is really scary to me. 52% of sandwich generation caregivers have had suicidal thoughts in the past 30 days. That is something that employers need to know about.
So the good news is that there are tools where employers can give people access, for example, to caregiver intensity index, where people can just on their own take a quiz about their own experience with caregiving, and it'll let them know whether they're in the red meaning they really need to ask for help, whether they're in the yellow, which means like they're a little bit on the edge, or whether they're in the green meaning they're doing okay. And people who are in the red those are the people who hopefully, will self identify and raise their hand and get access to those employee assistance programs and mental health programs that a lot of employers have, that people aren't really using. Because, again, they don't feel seen by their employer and they don't feel like they can raise their hand and say, I'm a caregiver having a tough time.
Evans:
Maybe they don't feel safe, speaking up because it's not accepted. And I want to talk a little bit more about the research that you're doing and some other work that you're doing right now I find the research that you're doing so fascinating, some of the numbers that you just shared with us, but I know also some of the research includes tracking social impact of the internet on American society, particularly as it relates to health and health care, and as a mom of three teens, that is very interesting to me. I know you’re also working on a book, Susanna, about peer advice and its impact on health care. And as you say, it's about the alchemy, grit, and soul of the health innovation pipeline, powered by people connecting with each other to solve problems. Fascinating. So can you give us a sneak peek here, a simple example of the impact of pure health advice on our healthcare system? What does that look like?
Fox:
Absolutely. So I'm going to give you some historic context and examples and then one that's like fresh off the press. So what I am writing is a field guide to the patient-led revolution in healthcare. I've spent a lot of time in patient communities of all kinds, talking to people who are inventing things, who are innovating treatments, who are creating new services. And right now, that's an untapped resource for the most part, it's really happening in kind of an underground, rebel alliance kind of way. But we are all standing on the shoulders of giants.
The patient-led revolution of today is based on the radical health movements of the past. So part of my research for the book was actually to go back into American history and look at how people have turned to each other in times of need throughout our history. Just looking at the 20th century, Alcoholics Anonymous, founded in 1935. And it was just two people who said, “Gosh, nobody is helping us with sobriety? Let’s help each other.” And now it's one of the most recognized and respected, peer-led sobriety organizations, and of course there's Narcotics Anonymous as well.
You know, you go through the 20th century, and there's just incredible examples of how people when, frankly, when mainstream health care wasn't there for them, when they were invisible maybe to mainstream health care, invisible to the federal government, or, in the case of discrimination, shut out. People turned to each other and innovated the kind of services and products that they needed.
One of the most famous examples is the work that was done in the late 80s, early 90s. ACT UP, they revolutionized how AIDS was being treated and they changed how discovery and regulatory practices were testing and deploying medications for HIV for the better. Well, the National Breast Cancer Coalition picked up that playbook. And they did the same thing for breast cancer. So those are the historic examples that I'm thinking of and that I'm writing about to sort of say, let's go through this history and let's understand all of the revolutions that have been happening before now. Because things are moving faster. And what I'm seeing is it's going to be a competitive advantage for scientists, for policymakers, for businesses, to partner with patients.
And the example that I'm thinking of that's right at the moment, is the patient-led research collective, which these are the patients who were the ones who during the COVID-19 pandemic identified, measured, and named long COVID. And it's because of patience, that the WHO, the NIH, the White House, all of these big organizations are now recognizing long COVID. The CDC is looking to patients, the patient-led work that's being done, because they're the ones on the front line. And I love seeing how patients were using consumer strength tools to conduct industrial strength research. Our collective opportunity is to help them upgrade. How might we figure out who in our communities is doing this amazing grassroots work that needs the resources? My book is going to be a guide to how to recognize and lift up that innovation.
Eyles:
Awesome. That is awesome. Susanna, one thing that you said earlier when we were talking about employers and caregivers, just made me think about differences that we might see in different communities even in terms of caregivers, whether it be based on where you live based on your ethnicity, based on the type of employment that you have. And maybe those who have been able to work more remotely have experienced caregiving differently than those that need to, you know, show up physically to work every day. I mean, have you seen some differences across different communities with respect to caregiving and whether it's been the experience of COVID or coming out of COVID?
Fox:
Absolutely. And, and here I'll point to the work that Alexandra Drane has done. She got the idea for Archangels after working as a cashier at Walmart. So after she sold her last company, she just really wanted to get back to spending time with people on a on a really personal level. And so without telling anybody that she was going to going to do this, she went kind of undercover and worked at Walmart. And in doing so she got into conversation with people in the checkout line and saw that if you just open up a tiny door to conversations about caregiving. It didn't matter who they were, who they voted for, you know, what their economic status was because by the way, everybody goes into Walmart. I think that there's something like 95% of us go into Walmart in the past year. No matter who we are across the across the scale. So many of us are caring for a loved one, and often being crushed by it. And Alex actually started this at Walmart, and Walmart has a campaign to help their workers.
And so it can be whether it's, you know, somebody who's a cashier, or somebody who has a job that allows them to zoom in. We're all struggling. We're all struggling in different ways. And I think everyone would benefit, especially during these times of great turnover where you really, as an employee are really trying to hang on to the people that you have. It's a really important retention program to recognize and lift up caregivers.
Eyles:
That's a great to hear. I love that. So we're down to our last question here. And we always really look forward to the response from our participants to this question. What is the next big thing in health?
Fox:
The next big thing in health is patient-led discovery and innovation. As I said before, smart organizations are going to see this as a competitive advantage. They're going to go beyond patient engagement. And instead, partner with patients and caregivers to create new products, new services, new process innovations, research protocols, and treatments. Again, it's a competitive advantage to not only listen to but work closely with the people who are experiencing the symptoms, that people who are making everyday decisions for themselves and their loved ones.
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Evans:
Susanna, thanks for the conversation. Really appreciate you being with us today.
Fox:
It's a pleasure.