In this day and age, when we or a loved one gets a new diagnosis or has a health-related question, we turn to the internet for information and advice.
Our guest on HealthChangers today has been working to find new ways to connect people online with communities who share the same needs and concerns.
Susannah Fox is a researcher and advisor to health and technology companies. She’s the former Chief Technology Officer for the U.S. Department of Health and Human Services and she worked previously at the Pew Research Center.
Leslie Constans: One of the things I wanted to kick off our conversation with was finding out a little bit about this idea of working at the intersection of health and technology and entrepreneurship. Can you tell us a little bit about your journey, how you got into this space, and what excites you most about innovation and health care?
Susannah Fox: I grew up in technology. My dad was somebody who read programming books at home like you would read short stories after dinner. And my mom is a writer, and after college I was lucky enough to work for some internet startup companies very early on and learned how to code and learned how to build websites. And then it was when I was working at the Pew Research Center during the startup phase for our internet project that I actually was just assigned to look at the social impact of the internet on health. That year, I also looked, by the way, at issues around privacy and security and online banking. But health was the one that really caught my eye, because there was so much potential. And by the way, this was back in the year 2000.
And I like to say that's when dinosaurs roamed the internet and we were already seeing that health was going to have a really big impact in terms of how it could adapt to the internet age. But sadly, in a lot of ways, I'm still waiting for that to happen.
We were trying to survey the landscape of what was going on in American society and how data could help people understand how the internet and technology was going to change our civic life.
LC: How did you know that back then? It sounds like you have a technology background, but it was really at the Pew Research that this idea of exploring that connection between technology and health came up for you, or did you have any background in health?
SF: I didn't have any formal background in health or health care. And what we were trying to do at that time is survey the landscape of, what was going on in American society and how data could help people understand how the internet and technology was going to change our civic life.
How it was going to change family relationships. And when we did that first study on health and health care, a few months after that, we were cited in JAMA, which a lot of people wait a long time to get into the Journal of the American Medical Association.
I knew that people were thirsty for this fresh data about how people were using the internet to gather and share health information. The other great thing that happened is I met Tom Ferguson, who became my mentor. He was somebody who understood that patients should really be driving what technology can do for them instead of having people tell them how they should use technology.
LC: You said you're still waiting for some of this to happen. It's been almost 20 years. What were some of the findings back then compared to now, and where we are? And maybe what has changed?
SF: One of the bedrock findings, which was the same then as it is now, is that one of the first things that people do, if they have access to the internet, is if they or a loved one gets a new diagnosis, they go online to search for information.
Patients should really be driving what technology can do for them instead of having people tell them how they should use technology.
LC: Yes, Dr. Google.
SF: Dr. Google is in fact the second opinion in the United States. And that was true in the year 2000, when only about half of American adults had access to the internet, and it's true today when the majority of us have it. That's one of our bedrock findings that hasn't changed. What was really interesting to see back then is how patients living with life changing diagnoses, something like cancer or HIV or ALS, were already starting to connect to data. They were looking for data sources to try and help themselves, and that was happening way back in the 90s and the early 2000s.
And so that was when I became interested in how data was going to affect and change our understanding of health and health care and help us discover new treatments. I started following some of those early patients. The other thing that they were doing was connecting to each other. And even as we've seen data become front and center, take center stage in health care, we haven't necessarily seen peer-to-peer health care, this connection between people.
Dr. Google is in fact the second opinion in the United States. And that was true in the year 2000, when only about half of American adults had access to the internet, and it's true today.
SF: Take as much of a central role. That's what I'm waiting for.
LC: Got it. You talked about the importance of data as people are searching online and using the internet to better understand their health conditions or how to live healthier lives. You moved on from the Pew Research Center and went to become the CTO at the federal government, and you led many successful innovation programs, including a lot in the data interoperability space. We don't often think about the federal government as being a really innovative organization or culture. Tell us about your work there and how you drove that culture of innovation and how could others learn from that, because it seems like you did some really groundbreaking work?
SF: It was an unexpected turn in my career, to be honest.
I live in Washington D.C., but I never thought that I would work in the federal government, and part of it is in the fact that I had spent so much time studying and trying to better understand the impact of the internet on health, that after 14 years of being a researcher, I felt like I couldn't physically write another research paper. I had to go out and take some action.
What was really interesting to see back then is how patients living with life changing diagnoses, something like cancer or HIV or ALS, were already starting to connect to data.
In doing that, it opened up a whole new vista to me. One thing that I like to tell people is that you should always be trying to learn new things in your career. You should always try and go to a conference where you don't know anybody or go to meetings where you have to secretly Google terms under the table, because that's when you're really going to start to grow and see your own field in a different way. And the opportunity to work as the Chief Technology officer for the U.S. Department of Health and Human Services was one that came about because of the work that I had done in the open data movement. I was really interested in how we push power out to the edges of the network. And power is also embodied in data. I looked at the opportunity and thought to myself, can I continue my mission of serving consumers, of making sure that whatever I'm doing in my work, I am staying as close as I can to the front lines of health care. And I looked at what they're doing at HHS and I saw that yes, I would be able to continue my personal mission and learn how to take it to scale.
And what was really fun about working there was seeing the possibility of bringing the spirit of a startup into an 80,000 person federal government agency.
LC: How do you do that?
SF: One way that you do that is by making sure that people know that they can come to the table. There was literally an office with a big table and anybody could walk in and ask a question that they didn't know how to answer. And we had a team of people who were trained in design thinking, who would try and help that federal worker solve that problem. My predecessors had created a whole suite of programs that taught people how to think like an entrepreneur.
We had an accelerator, where we brought people in who had a good question, but didn't know how to solve it, and taught them how to think like a startup for three months, within their federal role.
LC: That is so cool.
What was really fun about working there was seeing the possibility of bringing the spirit of a startup into an 80,000 person federal government agency.
SF: Yeah. And once they graduated from that, they could apply for funding from what we call the Secretary's Ventures Fund, and it allowed leaders at HHS to act like venture capitalists and invest in things that were really going to have a big impact. Really, the biggest thing was the ability from pretty high up in the hierarchy at HHS -- I worked in the secretary's office -- and if you can imagine a wedding cake, the agency was all bottom layers of the wedding cake, and the secretary's office was way, way, way up at the top. And in a hierarchical organization, sometimes it's really hard to have a good idea come from the bottom layer. If somebody from the very top of the hierarchy can basically do a tour of those offices and let it be known that if you have a good idea, you come see the chief technology officer and I would basically sprinkle fairy dust on that person and say, "You're allowed to have that good idea. You're allowed to try something new." And so now when I go out and talk to other people who work in hierarchical organizations, and we can name a few, that really describes a lot of legacy businesses.
You can do that. You can flip the hierarchy of your work and make sure that you're hearing from everybody who might have a good idea and make sure that everybody in an organization has the skills that they need to at least ask the right question.
LC: Yeah. Can you share a story of someone during your time at HHS who came forward with an idea or a problem to solve and what happened when they went through that process and got fairy dust sprinkled to make it a reality?
SF: Yeah, I have a great story. Sometimes, someone of the federal agency would come to the office of the CTO with a great question, with a problem they couldn't solve, and they even knew we don't have the expertise in house to even begin to solve this. And so, what we would do at that point is recruit an entrepreneur in residence, somebody from the private sector to come in to do a tour of duty for one to two years to work with the internal team and solve that problem. And one of my favorite stories is when the agency that oversees organ donation and tracking came to us and said, "This is an analog system. This is pen and paper. For all of the thousands of organs that are donated each year to make it to their donor site, this is something that is not yet tracked by digital means. And we don't have the skills. Could you maybe go out and get us somebody from FedEx or UPS, because this is a logistics problem."
This is package tracking problem. We found David Cartier, who had been an executive for UPS, and we recruited him to come in and try and solve this problem. What I love about David is that, you might know this, that for a long time, UPS required everyone who works at the company, whether you were going to work in the C-suite on down, you were required to work for a time as a driver.
LC: I have heard that.
SF: You had to go out and drive the truck. When David got to D.C., they tried to hand him a big pile of books to read and give him a cubicle somewhere in Rockville. And he said, "Nope. I'm going to go out into the field and I'm going to stand in the operating room and I'm going to follow some of these organs and better understand the process."
What if more executives actually were following patients and caregivers as they go through the health care system, as they walk the hallways of a hospital, as they try and get something reimbursed?
LC: Oh, interesting.
SF: And that's one of those things that I think is widely applicable. What if more executives actually were following patients and caregivers as they go through the health care system, as they walk the hallways of a hospital, as they try and get something reimbursed? And what David did was he saw that what they needed was a handheld printer and scanner. He designed a prototype, he deployed it in five different sites. My favorite part is that when he went back to collect the prototype, the doctors and nurses who'd been using it refused to give him back the prototype, and we were able to extend his contract and that system is now being deployed across the country.
LC: That's incredible.
SF: And sometimes you need that spark, that outsider who can come in, but I also give a lot of credit to the people in the federal agency who were brave enough to say we have a problem that we don't know how to solve. That, to me, is such a huge source of innovation, because if you have people who are afraid to say that they don't know the answer, but they do have a question, I mean, that's what you really need when you're going to move forward.
LC: Great. I want to talk a little bit about, since you left the federal government, you have moved into this area and been largely focused in the peer-to-peer health advice arena. That's where you're encouraging real people to connect with each other, to help each other. What got you involved in advocating for peer-to-peer health information exchange and can you tell us a little bit about the power of it, for people and their families as they're navigating health care?
A source of innovation -- because if you have people who are afraid to say that they don't know the answer, but they do have a question, I mean, that's what you really need when you're going to move forward.
SF: Absolutely. When we think about what is meaningful to us when we get sick, when someone we love gets a diagnosis, or we have a diagnosis, often the first thing that you feel is alone. You feel like this is something that you are carrying on your own shoulders and you have to educate yourself. One thing that people do is immediately go online and consult Dr. Google. But the second thing that people do is look for someone who shares their same diagnosis, or maybe is that their same life stage. And that connection, that moment when you find someone who looks at you and says, "I get it," is such a magical moment, because it can be emotional support, but it can also lead to someone connecting you with the right clinician. It can lead to someone connecting you with the right clinical trial, if it's something really serious. It could lead to someone helping you to set up a system at home for remembering to take those medications that you know you're supposed to take, but you just can't seem to get it together to remember to take them.
And that's sort of the first stage of peer-to-peer health care, and there's a lot of great energy in that first stage. I am really interested in helping business leaders to see this as a problem-solving opportunity, in the ways that we need more ideas. Again, to come from the bottom of the power hierarchy, we need more ideas to bubble up from patients and caregivers about how we need to do a better job of serving them.
And there's great ideas in these peer networks that we need to do a better job of listening to.
LC: Yes. And it sounds like, I mean, this is an area you've obviously studied and researched for years and years. How has technology enabled that and evolved to allow that peer-to-peer health care that's, I think, just becoming more and more valuable and prevalent in our digital society?
SF: Yeah. What I like to see is that this is a really ancient human instinct to connect with one another.
We always meet your neighbor or meet somebody you know at church who might be able to advise you, but what the internet does, it boosts the signal.
We always tell stories. We always meet your neighbor or meet somebody you know at church who might be able to advise you, but what the internet does, it boosts the signal. It allows you maybe to connect with someone who doesn't live in your town or even your state. It allows you to maybe be anonymous, if there's some shame or embarrassment or concern about somebody in your town knowing what you're dealing with. It allows people to connect across time and space. I think about the caregiver who's up in the middle of the night who is wondering whether they should call the doctor, is wondering whether they should take their child to the emergency room, and sometimes they can connect to a peer, who can either be reassuring or give them some advice.
And the internet is able to kind of boost the signal for that. What I love doing is looking at what different groups of people are doing. One group of people I'm really intrigued by is people between 18 to 22, and we did a study in 2018 funded by Hopelab and Well Being Trust that found that about half of this age group are going online to find other people who share their same health condition, 80% were able to find someone online and then when we asked them the last time you did this, when you found a health peer online, was it helpful, 9 in 10 said it was helpful. What I like to say about that is that this is a product that nobody is marketing yet, but there are tons of satisfied customers out there.
And again, this is a business opportunity. This is something that's happening at the grassroots that business leaders and other people can look at and get inspiration from and even great ideas from.
LC: Obviously I think whether you're a patient or a caregiver, there's immense potential for peer-to-peer connection and community. That was a great example. Are there others or stories that you've heard about the power of peer-to-peer sharing, as people navigate health care?
Whether you're a patient or a caregiver, there's immense potential for peer-to-peer connection and community.
SF: A personal story, and I have two children. One has life threatening food allergies, and I confess that I've actually, I had been doing this peer-to-peer research for years when Nate was diagnosed with food allergy, but I sort of thought I had it all together. I read a book about food allergy. I found an allergist that I thought was good, and I didn't find out until a friend of my husband's at work said, "There's a peer community online for other people in Washington, D.C. who have kids with food allergy." And once I joined that group, all of a sudden it became clear to me, we could go out to dinner. They have a list of restaurants that are safe for kids with food allergy. Wow. Our allergist actually isn't the best in our region, and we started driving up to Johns Hopkins, to Baltimore, because my peer group showed me the way to get better clinical care for our child and better home care, because a lot of food allergy is risk mitigation. How do you cut down the risk of an allergic reaction? That is stuff that a doctor or a nurse can't necessarily tell you.
But someone in your peer group can tell you about how to train your child's teacher so that they actually are listening to you and make a safe classroom environment.
LC: Where do you see this area going in the future and what, whether it's peer-to-peer or other problems that need to be solved in health care, can you look into the future and tell us maybe what some of your predictions are or where you see things evolving in the next, maybe one to five to who knows how many years?
SF: I don't like to make predictions. I like to say that instead of being a futurist, I'm a nowist, and I'm stealing that line from Joi Ito. And what that means is that everybody can see the future if you pay close attention to what pioneers are doing now. And pioneers in health and health care are people living with rare and life changing diagnoses. People who feel alone in some way. And that also describes, by the way, young people who are living with higher rates of anxiety and depression then have been measured in the past. And I think about how all of these groups that I've just described are using the internet to find each other, and to trade stories and to trade strategies. I'm really interested in how peer-to-peer health care could be used, for example, to help with medication adherence. This is a huge cost to our health care system and a huge cost to people's lives.
And sometimes people know what they're supposed to do, but they don't know quite how to do it. And there have been many academic studies to show that in all sorts of different ways, whether we're talking about smoking cessation, weight loss, dealing with chronic pain, whether it's treatment adherence or medication adherence, support from someone like you is the key that helps someone to create their own strategy for success. Medication adherence is something that I see great promise in peer-to-peer health care. In terms of 25 years out, what I'd love to see, I'm not predicting that this is going to happen, but I would love for us all to work on this together, is to change the culture so that we value the work of caregivers. I had an experience where I cared for my dad for the last year of his life, and by the end of the year, I realized I had learned as much at his bedside as I learned at any job that I'd ever had.
We need to do is change people's perception of the work that all of us do for ourselves and our families and in our communities, so that we are proud of that work, and we recognize the work of caregivers.
And so I decided to add it to my LinkedIn profile, and I added it as a line on my CV. Well, my sister, who also was caring for my dad, was frankly kind of taken aback and said, "Why would you claim this work? Everybody's going to know that you spent all of this time with dad." And I said, "I want to claim this. I learned so much." And I think what we need to do is change people's perception of the work that all of us do for ourselves and our families and in our communities, so that we are proud of that work, and we recognize the work of caregivers.
That’s Susannah Fox, a researcher and advisor to health and technology companies. That wraps up this episode of HealthChangers. You can find more information on all our episodes at cambiahealth.com. Follow us on Twitter @Cambia. You can now find HealthChangers on all of your favorite platforms. Just search for “HealthChangers” on platforms like Apple podcasts, Spotify and Google Play. Please subscribe and leave a review. Thanks for listening.
