This past week we had the chance to sit down with Susannah Fox, one of our advisors here at Ciitizen, for a conversation about technology and health. Susannah is the former Chief Technology Officer for the U.S. Department of Health and Human Services, and she specializes in providing strategic advice related to research, health data, technology, and innovation, targeting areas of the healthcare system that need to work better for patients and caregivers. She was in town to participate in the Andreessen-Horowitz podcast, along with Ciitizen CEO Anil Sethi and a16z general partner Vijay Pande -- but we got her alone for a twenty minute one-on-one beforehand, discussing everything from mental health to social media usage among young adults. Our conversation is below:
Ciitizen: You’re a mainstay at a number of large health conferences these days, and you’re also an eloquent speaker. How did you get started in your career?
Susannah: I was a start-up kid in the early nineties and then worked in journalism, helping to start a website for a magazine. I then became a researcher, and I was trained to only ever speak publicly about a subject that I had personally researched, whether talking to a reporter or on stage speaking at an event. It’s really good training for being careful with your words, which is important when you work in government.
Ciitizen: What I really admire about your blog and your writing is that you focus on technology and health coming together, but with technology more as a medium for human interconnectivity. It’s not about replacing human interaction but rather enhancing it. How did you get started with peer-to-peer health, and why does that subject continue to drive you?
Susannah: This interest at the intersection of health and technology started when I was at the Pew Research Center’s Internet Project, which began in the year 2000 as a way to look at the social impact of the internet on American society. I often like to say that was back when dinosaurs ruled the internet because it was such early days. Only about 50% of American adults had access to the internet at that time, and the Pew Charitable Trusts tasked us with doing national surveys, talking to people about how they were using the internet in regard to their civic life, their education and their children’s education, and their health and health care. Rebecca Rimel, the head of the Pew Charitable Trusts, was sitting in a conference one day where people were talking about the social impact of the internet as opposed to the business impact and no one had any data to show. She thought we should be talking about this important cultural phenomenon with data, so she allocated money to start the Pew Internet Project.
Ciitizen: What type of data did you ultimately find?
Susannah: When we started looking at various aspects of American society and how the internet was affecting it, health care emerged very clearly and early in our research as a part of the world that was deeply affected by the internet and technology, but we were coming at it from the consumer point of view. There were already researchers who were looking at it from the pharmaceutical companies’ point of view or from the doctors’ point of view. So much of the conversation in the late nineties and early 2000s surrounding the internet was about the stock market and how the web was changing business. Instead, we started by talking with regular people about how they used the technology and that got me interested in the patient perspective and the caregiver perspective.
Ciitizen: Did you start down that path on your own, or were there others that helped guide you?
Susannah: Early on I was very lucky to be taken under the wing of Tom Ferguson, who was an amazing MD and the first medical editor of the Whole Earth catalog. He was an early internet pioneer and someone who believed from the beginning of his medical training that the most important thing health care can do is to push as much knowledge and power as possible to the patients so that they can solve their own problems. That’s actually where health and well being lives: at home, not in the clinic. He encouraged me to start doing field work. I studied anthropology in college and he encouraged me to use that background to ask questions. More importantly, ask questions that people want to answer.
Ciitizen: What do you mean by “questions that people want to answer?”
Susannah: This past year I did a survey where we looked at how teenagers and young adults are using social media, especially in regard to their emotional well being. There’s a lot of public conversation about the rise in depression, anxiety, and suicidality in this age group, and it’s very concerning. It also happens to coincide with the rise of social media, so there has been some blame. The adults think if their kids could just put down their phones, they would feel better. Hopelab and Well Being Trust, who are the sponsors of this research, asked me and my co-author Vicky Rideout to take a look at this. We did a survey where we asked some questions that are clinically-validated scales for depression. What’s really important is that we asked the teens and young adults to tell us, in their own words, how they use social media when they’re feeling blue. No one had ever done that before, giving the power to the respondent in the survey, and we were almost overwhelmed by the response. We had over 600 responses to one open-ended question. It was almost as if teens and young adults had been waiting to answer it!
Ciitizen: They say you can always learn more by listening.
Susannah: Yes, and that’s what you want to do when you’re going into a new or emerging field. You need to have humility, and you want to listen first before you ask these questions. You want to think from the perspective of the respondent, or user of the product. How can I put myself in their shoes? How can I better understand their perspective? Well…how about we just ask them? What we found is that teens and young adults use social media in a number of different ways, and they’re pretty savvy about it. They actually curate their feeds so that when they’re feeling sad, and when they’re feeling depressive symptoms, they specifically go to Instagram because they’ve curated their feed to include funny cat videos, or inspiring biblical passages—whatever they’re into.
Ciitizen: So would you say you specialize in understanding how people use technology surrounding their health?
Susannah: My friend Paul Tarini gave me my favorite description of what I do: he said you’re an internet geologist, meaning I study the patterns in the landscape, and I can give advice to companies, organizations, and individuals about the patterns that I see. I can make some predictions. I can sort of look and say there’s going to be an earthquake, but I don’t make a lot of judgments because I come from a researcher’s point of view. The one area where I really feel motivated to have a stronger point of view is when it comes to peer-to-peer health.
Ciitizen: I heard Anil talking to you earlier about the fact that we don’t have enough doctors in the world to treat everyone who needs help, so you have to ask: are there a number of problems we can help patients with that don’t require them to see a doctor? Could they instead reach out to a network of health professionals or trusted individuals?
Susannah: Exactly, if you think about the problems that we have in life, a lot of the challenges that we have with our health or well being, whether they’re physical or mental, are actually taken care of at home. The decisions we make about the food that we eat, whether we’re going to exercise today or not, how we’re going to curate our Instagram feed—these are all decisions that we are making without consultation. We naturally turn to peers for things that we know peers have information about. I’ve done some research that shows—and this is very reassuring to a lot of people in health care—people are still more likely to turn to a clinician when it’s something serious. So when they need a diagnosis, or they’re figuring out a treatment plan, people still turn to their doctor. But if it’s something everyday they’re just as likely to turn to a friend or a peer.
Ciitizen: What about for rare diseases or odd symptoms?
Susannah: What I saw in my field work was that people were more likely to go online in these instances because they might not have anyone in their social circle that could answer that question. Looking at this emotional well-being survey, we asked questions about gender identity and how someone identifies in terms of their sexual orientation, and the LBTGQ kids were much more likely to go online for their health information because they feel alone or rare. But here’s the really important thing to know: we all feel rare when we have a new diagnosis, which is why the power of peer-to-peer health is so important. We’re never going to have enough nurses, doctors, and clinicians to answer all these questions or quell these anxieties.
Ciitizen: That’s when people start talking about Dr. Google as a solution.
Susannah: Right, we’ve got Dr. Google now as the de facto second opinion, but that’s not good enough.
Ciitizen: What are some of the tech-related products you’ve seen out there that might offer support for patients? Besides Ciitizen, of course.
Susannah: I’m all about pushing power out to the edges of the network where humanity lives. I want to do whatever I can to increase people’s access to information, data, and the tools that they need to solve their own problems. In the clinical setting, I’m seeing some very interesting work at Cincinnati Children’s Hospital with their pediatric IBD and ulcerative colitis practice. They are part of a network of doctors who are sharing best practices all across the country, and they also have a parallel network of families because there’s a lot of home care when it comes to caring for kids with ulcerative colitis. They’re creating a platform that creates a sharing of knowledge between these two networks, between clinicians and patient families.
Ciitizen: It sounds like they recognize the power of patient knowledge.
Susannah: Any time people recognize the power of peer and patient knowledge, it’s a good thing. When a newly diagnosed woman with breast cancer is offered the opportunity to have—in addition to a clinical consult—the opportunity to talk with someone who has been through a similar process at the same hospital, that’s really valuable. Just somebody to talk to who’s ahead of them on the path who can provide advice. I’ve also seen some great work being done in recovery. The opioid crisis is something we’re dealing with in this country where we don’t have enough treatment centers, clinicians, and response to handle the problem. It’s a wonderful thing to see Mass General, where patients are going through withdrawal and recovery, matching patients with someone who can be a peer mentor when they get out. How might we scale that, however? How might this be a program that happens everywhere rather than just at this one hospital?
Ciitizen: When health services don’t offer enough support, patients then turn to technology to solve these issues for themselves, right?
Susannah: In a parallel world, so much is happening online without clinicians knowing about it. There are thousands of groups, whether they’re on old school listservs or Facebook, where patients are gathering together and sharing notes, and that’s where Ciitizen can really help to empower these communities. Right now people are sharing notes in a bespoke, handwritten way, carrying around notebooks with printouts of their records. How might we empower them with the industrial strength data that their clinicians have available to them? How might we make sure that those expert patient groups are really empowered with the information that they need?
Ciitizen: It’s interesting how often professionals underestimate consumers, in terms of their ability to figure out, understand, or educate themselves on very complex subjects. That, too, requires humility.
Susannah: I remember someone pointing out to me that the patient sitting alone in the exam room is actually surrounded by invisible loved ones who are waiting for the news at home. That patient may not fully understand what’s happening, but they might have a niece who is a nurse and who is waiting to get the information so that they can help recommend care. It reminds me of the idea of the long tail. There may only be a few people out there who are as geeky about a topic as we are, but you don’t know what they might create that other people may find useful. How can we free the data and give these people the ability to access the information when they want it? Most people don’t want to think about their health information until they have to. However, the minute they get that diagnosis, all of a sudden they want that data.
Ciitizen: Is technology the answer?
Susannah: What’s great is that the internet has created an expectation around access to data and giving feedback, so now people are more likely to write a review. That can be uncomfortable, until we realize that feedback can be a gift to the greater community. So how might we figure out how to receive these gifts? How might we allow someone who’s just been through a cancer treatment to tell the next person in line: “Remember to bring a blanket because it’s really cold when you wait for that MRI.” That’s not treatment advice. That’s just get-through-the-day advice.
Ciitizen: Thank you so much for taking the time to talk with us! I can’t wait to hear the a16z podcast with Anil and Vijay after the holidays.