Susannah Fox Spills the Tea on the "Patient Rebel"

[00:00:00] Welcome to the HITea With Grace podcast. This is Grace Vinton and I'm thrilled to introduce

[00:00:10] you today to Susanna Fox, author of Rebel Health. Susanna, thanks for joining us. So glad to be

[00:00:16] here. Thanks. So, so thrilled to have you on. I just finished reading this book and I could not

[00:00:23] put it down. Literally in one setting, I read the entire book. It took me many hours and it was

[00:00:30] incredible and then I had to read it again. My husband couldn't believe it so everybody get yourself

[00:00:36] a Rebel Health. So Susanna, tell us a little bit about your career journey and what inspired you

[00:00:42] to write Rebel Health. I wrote Rebel Health to help people step into their power. I want people to

[00:00:50] step into their power whether they are patients, caregivers, survivors or healthcare leaders,

[00:00:58] investors. People who work in healthcare are not yet recognizing the potential for the

[00:01:08] patient-led revolution and so I wrote this book not only to introduce these two groups together

[00:01:17] this idea of the Rebels of Healthcare. These are the patient survivors and caregivers who are building

[00:01:23] the missing infrastructure of healthcare, creating incredible innovations off in at home or at the

[00:01:30] bedside. I wanted to introduce them to people who have access to mainstream sources of power

[00:01:39] and to describe this work in a way that people can see themselves in a new way.

[00:01:48] I know I felt that having had my long patient journey that the listeners know about

[00:01:53] and then coming to a realization, all of this lived experience expertise I now had as an

[00:02:00] MD but really just a patient but feeling like I knew so much about my condition and others in similar

[00:02:06] situations. So I'm so grateful you wrote this to help empower patients and caregivers to really

[00:02:12] have a say and they are having to say more and more. So tell us a little about your career journey

[00:02:18] that was in advance of this Rebel Health like what brought you here? Oh thanks yes so I

[00:02:28] did not necessarily have a background in IT or healthcare. I studied the anthropology and

[00:02:36] my engineer dad who had convinced my both my brother and sister to be engineers was a little

[00:02:41] taken aback that I chose social science but I was a startup kid in the 90s. In 1994 I worked for

[00:02:52] the startup phase for real networks. I became really excited about the possibility of building

[00:02:58] websites and building tools that were going to flip the power structure in terms of for example

[00:03:07] at US News World Report I helped start their website for that weekly magazine and created a tool

[00:03:13] for people to re-rank the US News College rankings according to what's important to them. So

[00:03:21] right from the beginning of my career I was really intrigued by how the internet and access

[00:03:28] to data and access to technology could change the conversation and could change a power structure

[00:03:35] than a behavior researcher and the first report that I wrote about healthcare and technology

[00:03:44] I titled it The Online Healthcare Revolution. This was back in your 2000 and

[00:03:53] little did I know where things were going to go. That now 24 years later I'm still talking

[00:04:00] about the revolution and I was really blessed to have a mentor. I've had many incredible mentors but

[00:04:09] Tom Ferguson was a mentor who said if you want to understand the future of healthcare and

[00:04:17] technology, you need to spend time with pioneering patients and survivors and caregivers

[00:04:26] and so often that people live in with rare disease and life-changing diagnoses.

[00:04:30] And so I actually used my anthropology background and conducted field work in those communities

[00:04:37] and immediately saw that a lot of people in the rare disease community are 10 years ahead of

[00:04:43] the rest of the industry in using technology and it was based on 20 years of that research

[00:04:52] that I wrote, Rebel Health. Wow, wow so interesting such an interesting path that you

[00:04:59] led to this point and I love that the Online Health Revolution now what it's become it's pretty

[00:05:04] amazing. So in your book you discussed the concept of health rebel alliance. Can you

[00:05:12] elaborate on what that means and how we can become a part of it? Absolutely. What I noticed in my

[00:05:19] field work is that when someone gets a new diagnosis, when someone becomes a caregiver,

[00:05:28] when someone is faced with a health challenge, they can have many different reactions to that.

[00:05:35] There is a big group of people who actually are too exhausted, they're too stunned,

[00:05:42] they don't want to take action and that's fine. They can call on someone else in their network

[00:05:49] someone else in their family, someone else on their care team to take on a more powerful role.

[00:05:56] What I saw is that people's behavior fell into some patterns and it was in looking back at

[00:06:04] all of my field notes that I discerned these four archetypes of the patient-led revolution.

[00:06:11] One of the most important archetypes and the one that people think of most often when I start

[00:06:15] talking about peer-to-peer healthcare are the networkers and that's really where you see the

[00:06:22] the diabetes rebel alliance or the rare disease rebel alliance or the ALS rebel alliance.

[00:06:29] It's when people gather together to pool resources and to help each other and that is at

[00:06:38] the basis of peer-to-peer healthcare and what the internet has done is that it's allowed people

[00:06:46] all over the world across time zones, across geography to find each other and help each other.

[00:06:56] And one of the messages of the book is that you're not alone. If you have a new diagnosis,

[00:07:04] there are people who would love to help you if only they knew how to find you.

[00:07:10] I love that, I love that concept and it's so interesting because I've been kind of involved in

[00:07:15] this networker's side of it, connecting people either through the podcast or through social media,

[00:07:21] helping people connect with folks to get a diagnosis or figure out treatments and it's very

[00:07:27] fascinating to see how much of this lives online now and is also being kind of encouraged through

[00:07:33] podcasts. And I love that you mentioned that in the book because it's what I've been kind of living in

[00:07:37] and seeing and I'm like, I guess I'm a rebel, I didn't even realize I'm in this alliance but I did know

[00:07:42] you do know because you can feel the difference and you can feel the change happening especially when

[00:07:47] it impacts policies directly. It's pretty cool. So tell me about the other three archetypes.

[00:07:52] So you said networkers and then tell me about the other three. Sure. So seekers are the people who

[00:08:02] are not getting answers. They may know yet have a diagnosis, they may have gone to see a clinician

[00:08:09] and not gotten the answers or they've been given a treatment option that they don't understand

[00:08:15] and nobody's really explaining it to them in a way that they need. Seekers go on the hunt for

[00:08:23] information. They do not give up that really is at the core of the Seeker archetype. I know

[00:08:32] their archetype are solvers, solvers attack problems. They are the types of people who if they see

[00:08:39] something that isn't working, they take it apart and put it back together again whether it's

[00:08:45] an assistive device, whether it's a medical device or actually whether it's a system. A solver

[00:08:51] can be somebody who looks at a clinical trial and says I could design this better or they look at

[00:08:58] something that's facing their community in terms of regulatory restrictions and they say

[00:09:05] you know what? I actually can hack this regulation. You know I'm going to create the opportunity

[00:09:11] for my community to move forward. That's a solver. The fourth group said network is written

[00:09:17] between the fourth group emerged in my interviews as I was writing the book because so many

[00:09:25] patient-led teams talked about how they found a champion, how they found someone who had access

[00:09:34] to mainstream sources of power and that champion was able to get those resources to a

[00:09:43] caregiver-led or survivor-led or patient-led team, champions fast track innovation. And by resources

[00:09:52] it's pretty diverse to think about what a champion might have access to. Of course funding comes to

[00:09:58] mind immediately. It could also be access to special materials or labs or manufacturing facilities.

[00:10:06] A journalist can be a champion by shining a spotlight and sharing

[00:10:13] attention with a patient-led team and regulatory guidance is another aspect.

[00:10:20] It's really interesting the champion role because they not always experience that patient-care

[00:10:27] giver side the way the true patient-care giver is experiencing it, right? And yet they are choosing to

[00:10:34] use that power to make an impact. You've got to wonder do you think that there are certain personality

[00:10:41] types that kind of are interweaves throughout all of this or do you feel like it's more has to

[00:10:46] do with your experiences and just willing to make a difference? It's a great question. I've thought

[00:10:52] about this about whether there are personality types that are attracted to the different kinds of

[00:10:59] archetypes. And again, going back to the interviews that I did and the research that I've conducted,

[00:11:08] it was more likely that they faced a certain problem that they were trying to solve. And that's

[00:11:16] my message in the book as well that you might naturally be a solver, like you might naturally

[00:11:23] be somebody who can't help it take something apart or you might naturally be a networker, someone who just

[00:11:29] can't help but form community and learn and community. But I was intrigued by people who

[00:11:38] recognized that a problem that they faced required a solver's mentality or skills or required a

[00:11:46] seeker and they either became that or they recruited them to the team. In terms of champions,

[00:11:54] champions are people who recognize that the mission that they're on as a policy maker, as an investor,

[00:12:05] as a business leader, aligns with the mission of the rebels. And they take the opportunity

[00:12:15] to again share their resources and share their power because I lovingly call them the suits.

[00:12:25] Sometimes champions wear suits, not always but the rebels and the suits can have mission alignment

[00:12:33] and that's when you can really scale a piece of land innovation. They all agree,

[00:12:39] you know they agree on the same mission in the same goal and they want to work. Use their

[00:12:43] talents to better the world for all. It's interesting and it is interesting to think about the fact

[00:12:49] you know a patient's a caregiver's can't control what's happening to them right and so in that

[00:12:55] sense sometimes they're thrown into one of the roles without even thinking they'd ever be in that role

[00:12:59] you know and it's am I going to take up the cause and change it for everyone or if I'm

[00:13:04] am I going to just try to survive in this moment and it's hard because you can't really choose

[00:13:07] most of the time in that situation. That said you know how to envision patient-led research and

[00:13:13] innovation you know shaping the future of healthcare, especially in terms of addressing gaps and

[00:13:18] you know challenges within the current system. What do you hope that future to look like?

[00:13:23] One of my goals for the book is to help people to see not only the powerful roles that the

[00:13:33] patients and survivors and caregivers can play in changing healthcare for the better I also wanted

[00:13:40] to create a new lens where people can see all the unmet need, all of the suffering that is going

[00:13:49] on outside the view of mainstream healthcare and I want people to recognize that there's a lot

[00:13:58] of opportunity. There's a lot of opportunity whether it's going to be led by philanthropy,

[00:14:05] whether it's going to be led by government, whether it's going to be led by business

[00:14:09] to address all of the unmet needs. I don't think people realize how controversial this is

[00:14:18] because for many years you know it's very much we need to think about what's best for the

[00:14:23] physician, the physician knows what's best, then it's collaborative care and oh we need to

[00:14:28] the physician needs to collaborate with the patient and then we collaborate together. Patient

[00:14:33] lead this is a new thing and it's controversial and people don't like it. It's very uncomfortable for

[00:14:41] people because patients are they don't know enough, patients are weak caregivers are weak like

[00:14:48] they're in a weak position right and so this is actually really controversial. What are your thoughts

[00:14:53] on that? The fact that this is really saying something that's not being said and people are also

[00:15:01] saying yes this needs to be said but there's a big portion of people that are not comfortable with this.

[00:15:07] Thank you for picking up on that because this is a radical notion and often people who are used to

[00:15:17] hearing words like patient engagement and patient centered think that patient lead is the same

[00:15:26] and it's not. So patient centered was a good start. Patient centered is the philosophy

[00:15:34] that instead of the clinician being at the center that it should be the patient at the center

[00:15:40] and that all of the decision making and information should flow through the patient and that they should

[00:15:46] have a say in their care and in their treatment options etc. Patient lead is indeed much more

[00:15:55] radical. It says that patients should be at the table from the beginning when you are looking for

[00:16:03] example at a research project and here's where I want to say it can look radical, it can be uncomfortable

[00:16:15] but again look at the success of the patient lead teams that have been given the resources that they need

[00:16:24] to make a change and again when you think about the gaps that exist, clinical trials that

[00:16:35] don't reach recruitment levels that are needed well if you design with patients and caregivers

[00:16:42] and survivors you will be more likely to design a trial that is a decentralized trial for example

[00:16:51] or has endpoints that respond to what the community is interested in and you will be able

[00:16:58] to recruit people to your clinical trial so that is a business need that a patient lead team could

[00:17:04] help with. The same thing is true in device design. The same thing is true when you're thinking about

[00:17:12] value-based care there are so many aspects of healthcare where patients can help if they are

[00:17:20] brought in early and not brought in as a token. I the token patient thing I can tell you just from

[00:17:29] this years of experience I have in this patient advocacy thing oh let's just have this token patient

[00:17:35] let's just have this person most of the time it's not diverse it's people who are comfortable

[00:17:38] speaking on their condition it's folks that you know can speak the language you know I mean there's

[00:17:45] so many things in that that token is that is so messed up but I think that a company that does a

[00:17:53] really great job is savvy cooperative in terms of finding really diverse patients if you are looking

[00:17:58] to include the patient voice really consider looking into savvy cooperative you do a great job

[00:18:04] finding a patient based on your specialty based on your what you're hoping to gain from the insights

[00:18:10] and I just love the patient genius bars that they put on at conferences now where people can come

[00:18:17] and speak to real live patients and caregivers in specialty they're trying to reach and get the

[00:18:23] insights and things like that are really making a huge impact you know I'm wondering what advice

[00:18:30] would you give to patients and caregivers who are finding themselves now navigating the complexity

[00:18:36] of illness outside of the traditional healthcare system how can they effectively advocate for

[00:18:42] themselves and drive positive change and how can they move from secret to networker to

[00:18:47] champion like are there ways that they can find themselves in different roles that utilize their

[00:18:52] skills and abilities I have a couple pieces of advice one is to know that you are stepping into

[00:19:03] a hundred year old tradition at least in the United States of radical health movements

[00:19:11] that start outside the mainstream and very often eventually something that started on the friend

[00:19:19] moves into the mainstream and we actually see that in peer to peer healthcare we see it in terms

[00:19:26] for example of mental health in substance use disorder recovery eating disorder recovery

[00:19:34] we also see it in diabetes that peer to peer healthcare this this notion that you connect with other

[00:19:39] patients for behavior change and support that's now something that is mainstream that started on

[00:19:46] the fringe so my first piece of advice is to know your history, know your history as a patient or

[00:19:55] survivor or caregiver advocate there are people who have done this work before that you can learn from

[00:20:03] so that's my first piece of advice the other piece of advice that I have is in looking across

[00:20:09] the landscape at a patient lead teams that have been successful they very often brought the skills

[00:20:17] that they had from their life previous prior to getting sick or prior to being diagnosed

[00:20:24] they brought those skills to the situation that they found themselves in in healthcare so

[00:20:30] if they were an engineer in their prior life they brought that those skills to healthcare if they

[00:20:38] were an artist they brought the mindset and skills of an artist to healthcare don't leave

[00:20:45] the rest of your life behind bring your full humanity to the challenge because you are going

[00:20:52] to need all of those skills to survive and thrive. I love that absolutely love that another

[00:21:00] question you know I have for you is how can companies you know farm innovation health

[00:21:06] tech innovation and even business governments better support and leverage the power of

[00:21:11] patient-led initiatives to improve outcomes on a larger scale what are some pieces of advice that you

[00:21:18] could give them about not speaking with patients and really helping them understand

[00:21:25] what they're doing and and get gain insights from folks. The most useful thing that a company or

[00:21:32] government agency or any organization can do is first very clearly define the challenges that you

[00:21:38] face what are the challenges that are the business imperatives for this you know pick a period of time

[00:21:45] and then think about if there was a way to incorporate insights and innovations from patients

[00:21:53] and survivors and caregivers what what are the problems that are that are the best match between

[00:22:00] what we could learn from the essentially the customers for the product market fit. So that's the

[00:22:08] first thing to do. The second piece of advice that I have a really interesting way to start that

[00:22:16] that I've seen be very successful in both business settings as well as government settings

[00:22:22] is to hold a price competition where you create a problem set that again is very very clearly

[00:22:30] defined that you know is important and you don't have the skill sets within your company or

[00:22:39] organization or government agency to fulfill that need. You can create an open public price competition

[00:22:47] start to get insights from all kinds of teams and in that way it's a way to to build an

[00:22:55] intake valve for patient survivor and caregiver collaboration. So interesting such a good idea you know

[00:23:06] so people don't really think outside the box like that sometimes and it's great to hear that some

[00:23:10] organizations are you know really fascinating. So your book covers like a wide range of health conditions

[00:23:17] experiences that's a point of it right it's patient-led caregiver led it's it's there's a wide variety

[00:23:23] of experiences in there. Are there any particular stories or insights from that really resonated

[00:23:29] with you the most and I know you've had so many it's hard to choose but what really impacted you

[00:23:34] and gave you in a comment. I hope you'll indulge me because I have to please tell us all.

[00:23:43] So it is rare disease month rare disease day is February 29th it's on a non-leap year it's February 28th

[00:23:51] and the rare disease community welcomed me as a researcher and it was doing field work with the

[00:24:01] National Organization of Rare Disorders communities that because of them I coined the term

[00:24:07] peer to peer healthcare because rare disease is so extreme they are the pioneers building new

[00:24:14] civilizations on the frontier using every tool they can find. However the I will also say that

[00:24:23] the full stack of the rebel health alliance is most visible in diabetes. So when someone is

[00:24:32] newly diagnosed with diabetes I'm happy to say that it's now standard of care to recommend

[00:24:39] that people connect with peers so that they're able so that someone living with diabetes is able

[00:24:48] to connect with other people living with diabetes and so that for example parents of children

[00:24:53] living with type one diabetes are able to connect with their online or offline. This is standard

[00:24:59] of care now and there's there's wonderful programs because of the community where the

[00:25:07] the networkers are able to gather. What's also really wonderful is that there unfortunately are a

[00:25:15] lot of unsolved problems in diabetes and so that's where seekers come into the picture.

[00:25:23] They go out on the hunt and they will not give up and they are often burning with anger and frustration

[00:25:32] at what is happening to them, what is happening to their families and they will go out and find

[00:25:38] other solutions and then bring them back and the networkers will spread them. What I also

[00:25:44] live about the diabetes community is that when they were given some new devices in the 90s

[00:25:50] that's when we started to see continuous glucose monitors and insulin pumps, amazing innovations

[00:25:56] that were locked down. People did not have access to the data that was being generated by their

[00:26:02] own bodies and the devices were separate. So people were having to constantly do the math that's

[00:26:13] necessary to do the calculations. The other thing that I love is that parents were particularly

[00:26:24] frustrated because they would have to settle arms throughout the night and then you can see

[00:26:29] out and interrupt their sleep to go and check on their child's continuous glucose monitor screen.

[00:26:36] Until a solver named John Costa hacked into his son CGM, free the data, sent it to his

[00:26:44] Apple Watch and then the networkers took over, shared it, suddenly all over the world people were

[00:26:49] starting to do the same thing, free the data, send it to their Apple Watch.

[00:26:55] Dana Lewis and Ben West, collaborative Scott Libran to create the to break down the insulin

[00:27:03] pump, create a DIY open source, hard official pancreas and the amazing thing is this is where

[00:27:10] the champions come in. Champions in industry and the FDA after some prodding and you know there

[00:27:18] was some regulatory hacking and solving by people like Anna McCollister and Amy Tendrick

[00:27:24] and Howard Look, but where we are now 10 years into this is that the industry and the government

[00:27:32] have mission alignment with the patient survivors and caregivers so that everybody understands

[00:27:38] the data belongs to the patient. We have to have access to their data.

[00:27:47] I just love that. I love that so much because you know it was such a hard path to get to that

[00:27:53] point right and to hear about how all of the different archetypes work together to make that

[00:28:00] dream of reality is super impactful especially given how abundant diabetes is in it all across

[00:28:08] the world you know and how many people are impacted by that and diabetes and beyond exactly.

[00:28:15] So I would love now to dive into your personal life, you know and your kind of personal experiences

[00:28:22] of being a leader now in the space and an author and you know I'm wondering what are some

[00:28:29] things that you do in your personal life to work your best and make a difference. You know you're

[00:28:34] making time you have to done a lot of writing and a lot of promoting at this point now it's busy

[00:28:40] busy. What are things you do to keep on top of your game? Gosh, um so keying off of the the diabetes

[00:28:51] parents who have to settle arms throughout the night. I think sleep is a in a medical basis for health.

[00:29:00] Focusing on how you can get as much good quality sleep as possible. That's one of those

[00:29:08] basic things that people are starting to talk about but I think that is a transformative aspect

[00:29:14] of health. I think investing in relationships is also really important. Whether it's in a

[00:29:23] primary relationship or in relationships that you have with friends that's been incredibly sustaining

[00:29:29] for me and a big part of my emotional well-being. I'll also say that as as I was approaching turning

[00:29:40] 50 a few years ago I started working out with a personal trainer. I had done a lot of that kind of weight

[00:29:47] training in my 20s and I got back into it actually because of some conversations that I had

[00:29:57] with peers who are about 10 years older um and I started the interviewing my peers who were very,

[00:30:05] very healthy in their 60s and what they said is start now. Start now with a regular exercise routine

[00:30:14] including weight training because that turns out to be predictive of long-term vitality.

[00:30:22] Wow, that's so you can actually like hit like a girl which is amazing. That's fantastic and really

[00:30:30] important for us to remember you know keep sleep in mind, keep working out in mind. If you

[00:30:36] want to work your best in a different and make a difference you need to be healthy to do so.

[00:30:41] Burnout doesn't help anyone especially not you so to do your best work make sure you're taking care

[00:30:46] of yourself. Do you have any advice for women in health care and health IT and in patient advocacy

[00:30:52] that are looking to write a book? You know there's a lot of people who would love to become an author

[00:30:57] or what are some pieces of advice you would give to folks? The only way to write a book is to sit down

[00:31:05] every chance you get and this is maybe not a little crude but but in seat fingers on keyboard.

[00:31:14] Just write every day if you can even if it's only for 15 minutes. The other thing to do if

[00:31:22] you are working and juggling lots of things set as schedule, set aside time to invest in it.

[00:31:32] I will say there's lots of ways to contribute to the public conversation. It does not have to be a book.

[00:31:40] I was in a peer mentoring group and I kept talking about writing a book but not actually doing it

[00:31:48] and so my peer mentor said frankly we're tired of you talking about this book.

[00:31:54] Why don't you write an article? Why don't you test your ideas with a target audience

[00:32:01] by writing an article and so that's when I wrote a Harvard Business Review article about innovation,

[00:32:07] patient-led innovation and I liked it so much that I said okay now I'm really going to work on the

[00:32:14] but if you're thinking about writing a book just know that there's so many alternatives to writing a book

[00:32:23] it's really hard to you know it's it's frankly really really hard work.

[00:32:29] Well thank you so much for doing it we really appreciate you putting that wisdom out into the world

[00:32:36] and it's a controversial thing so we know you were kind of putting your reputation on the line

[00:32:40] to by doing it so I really appreciate you taking that step and doing that for for the industry.

[00:32:46] And can I just say on that point it's not it's really not about me or my reputation.

[00:32:52] I have been so privileged to spend the last 20 years collecting stories having people trust me

[00:33:02] with their stories that I feel a responsibility to share what I've learned.

[00:33:11] Now to finish this conversation off right where can our listeners find you online?

[00:33:16] Susiana Fox.com as US a n and a hfox.com I'm also on pretty much all the platforms I'd say

[00:33:26] these days LinkedIn, Twitter, Instagram even threads let's get out there

[00:33:32] and what I love to do is be in conversation with people so if you see me on one of these platforms

[00:33:41] please write a comment and I just love to to learn from people.

[00:33:47] That's terrific now before I forget did you happen to bring tea with you today?

[00:33:52] I did so this is a mug made by my mother-in-law who is a potter

[00:33:59] and we are so lucky to have so many beautiful pieces by Marcia Helper and she's based up in Cambridge

[00:34:06] Massachusetts. And yeah so that's my that's my cup of tea. Oh it's beautiful it's like a light blue color

[00:34:15] and just so beautifully made I just love it in Cambridge Massachusetts is one town over for me

[00:34:20] so I'll have to stop by and say hello and get myself a mug. Well thank you so much Susiana for joining us

[00:34:25] today we really appreciate learning from you. Thanks for having me and thanks to you folks for joining

[00:34:31] us too check out the high-to-it-grace website for more great guests like Susiana today. Cheers!

[00:34:38] Like a girl media is more than a media network it's a community we want to meet you and amplify

[00:34:44] your voice and the voices about standing women innovating in healthcare. Interested in starting

[00:34:49] your own podcast for hosting an event near you? In that quote us online or in person,

[00:34:54] we're here to support and empower you.