00:00:00 – 00:00:07 Nitin Bajaj

Welcome to The Industry Show. I’m your host, Nitin Bajaj, and joining me today is Sophie Shah. Sophie, welcome on the show.

00:00:07 – 00:00:09 Sophie Shah

Hi, thank you so much for having me.

00:00:10 – 00:00:12 Nitin Bajaj

Great to have you here. Let’s start with who is Sophie?

00:00:13 – 00:00:43 Sophie Shah

Yeah, so I’m Sophie, I’m 16, and I’m the founder of Chronically Me. So I’m super passionate about healthcare equity and making systems where they don’t exist to benefit the people who need them most. And I think I’ve seen throughout all my work that there are so many gaps that need to be filled, and that’s just truly what I’m passionate about, is being able to, you know, spend my time building things where they don’t exist and working with patients and the users in mind.

00:00:44 – 00:01:11 Nitin Bajaj

You know, it’s so inspiring to see someone thinking about this as passionately as you do, and actually doing something about it. So as we get to learn more about what drives you, motivates you, tell us what Chronically Me is, but also why you started it. Was there a moment, an experience that happened that inspired you to take action to build this?

 

00:01:12 – 00:01:42 Sophie Shah

Yeah, so I’ll start with where it started. So I went through my own experiences in the healthcare system, and I myself felt very doubted and invalidated and experienced a lot of isolation through that. And I looked online to see if just a couple of people could maybe resonate with what I had gone through and if anyone else maybe had similar experiences. And instead of just finding like one or two, I found thousands of people echoing almost the exact same story of what I was sharing and what I had gone through.

00:01:42 – 00:02:01 Sophie Shah

And that was moving because I just couldn’t believe this many people were struggling with the same thing and no one was talking about it. And so that’s initially why I created Chronically Me, was to just have a space to center those voices that clearly weren’t being amplified. And so that’s why I created Chronically Me.

00:02:01 – 00:02:27 Sophie Shah

And it began as just a website to publish patient stories. So I reached out through social media, connecting with patients and advocates and asking if they wanted to tell their story online in a way that was more permanent and meaningful. And then through that, it just gained a ton of momentum and really gained some inertia from there because I think people felt heard and seen for the first time where they really hadn’t before.

00:02:27 – 00:03:08 Sophie Shah

And this was kind of an untapped area where this wasn’t really being done and putting these voices into mainstream media. And so today now, Chronically Me is so amazing to get to see the impact it’s having on patients everywhere. And we connect around 150,000 patients worldwide, all living largely with chronic illness disorders, but also all sorts of complex healthcare issues. And then we have youth programs, ambassador teams, we spotlight research, and the central goal of Chronically Me remains to amplify patient voices above clinical definitions. And we do that through partnerships, through our patient story program, and then through everything else we do.

00:03:09 – 00:03:26 Nitin Bajaj

And that’s amazing impact, 150,000 plus people, voices that typically are not heard. So kudos and congratulations to you on not just thinking about it, doing something about it, but also giving people voices and really inspiring.

00:03:27 – 00:03:27 Sophie Shah

Thank you.

00:03:28 – 00:03:57 Nitin Bajaj

Now, you talked about the impact. But when you talk about healthcare, especially in this country, it’s, for lack of a better term, a very challenging environment. And that, I would imagine, played a role in making you feel the way you did, and it has to every single one of us. Amongst the many challenges that you have faced and we continue to face, what is the one big one that you would like to call out?

00:03:57 – 00:04:49 Sophie Shah

Yeah, I mean, I think the biggest one right now that I’ve seen as Chronically Me grows and we try to make an even larger impact beyond working with patients and now into a more institutional level by promoting legislation and all larger changes like that has really been this institutional inertia that exists. Because these systems were created a long time ago all to serve a certain type of model patient. And just that doesn’t match reality with what real patients look like and what real cases look like. There is this divide that exists. And I think systems are so outdated in how they operate. But I think that there’s so much force behind them, they’re really hard to change. And so I think that’s been a big issue is trying to find where we can make a difference beyond just an individual level and seeing what impact we can actually make as a team.

00:04:49 – 00:05:09 Sophie Shah

Because even when we’re trying to push legislation into being enacted or any other large governmental policy things, there’s so many barriers to entry, which makes sense, but I don’t think creating beneficial change should be such a difficult and insurmountable obstacle when we’re talking about real lives that are being impacted.

00:05:10 – 00:05:58 Nitin Bajaj

So true. And you know, not to take away when we talk about the challenge, I want to make sure that this doesn’t take away the validation, the value, the impact of just belonging to a community that is all going through the same challenge brings in with the voices that are being heard. And just the validation of that in and of itself is tremendous value. I understand what you’re saying with, you know, not being able to move these heavyset systems that have been put in place. But I don’t want to take away the value you’ve already brought for this community. So as we look at this big challenge, on the flip side of that comes opportunities. What’s the one that you’re most excited about?

00:05:58 – 00:06:29 Sophie Shah

Yeah, I would have to say some of our youth programs. So right now we run two major youth programs. One is our internship program, which employs around 40 student interns that are high school and college age across the US. And seeing these students, who most of them are super unfamiliar with the healthcare space, with chronic illness and anything like that, but learn to be able to speak on behalf and advocate for patients and be able to be ingrained in these systems has been really just very inspiring to watch.

00:06:29 – 00:07:06 Sophie Shah

And then secondly, our fellowship program. So that is something that our first cohort is launching in a couple of months. And it just excites me so much to think about this next generation of leaders and student leaders and what impact they’re going to be able to create in their community, regardless of their affiliation with Chronically Me. I think just being able to see a whole cohort and hundreds of students be mobilized and inspired to take action in their community and so motivated and committed as I’m reading all these applications right now, it’s been just so inspiring to see and I’m very, very excited for that and what that holds for the future.

00:07:07 – 00:07:09 Nitin Bajaj

That’s amazing. Fascinating. Kudos to you.

00:07:10 – 00:07:10 Sophie Shah

Thank you.

00:07:11 – 00:07:32 Nitin Bajaj

Now, as we look forward, I’d love to pause and reflect. And I’m going to ask you to share two moments. One where things did not work out as you had expected, there was disappointment, failure, lessons. And another where things exceeded your expectations and became a success beyond what you had imagined.

00:07:33 – 00:08:03 Sophie Shah

Yeah, I would say a failure early on really was probably taking on too much and putting it all on myself. And I think a lot of people who are ambitious tend to do that. But I do think it impedes progress. Like, I think we have this notion that it’s admirable to be a workhorse and put everything on yourself. But I think it does get in the way of creating real lasting change. Because there’s only so much one person can do, regardless of how capable they are.

00:08:04 – 00:08:39 Sophie Shah

And so I think I didn’t realize how much more impact could be created and how many more voices could be amplified if I empowered other people to take this leadership on and employ the Chronically Me mission in their own communities. And so that’s something I definitely had to see firsthand and learn early on that I had to be confronted with that and realize like I was getting in the way of what I wanted because I was just not really wanting to give it to other people or didn’t know how to even share it with others and be able to communicate that. So I think that’s definitely something I struggled with.

00:08:40 – 00:08:41 Nitin Bajaj

Are you sure you’re 16?

00:08:42 – 00:08:42 Sophie Shah

Yeah.

00:08:44 – 00:08:57 Nitin Bajaj

That’s amazing to have that wisdom, you know, to have that realization so early on in the process, in this entrepreneurial journey is a blessing. So again, congratulations.

00:08:58 – 00:09:12 Sophie Shah

Thank you. And then, yeah, on the flip side, a success story. I think I would point to an individual case that comes to mind when I think of like a success story that’s representative of all this work that’s been going on these past few years.

00:09:12 – 00:09:42 Sophie Shah

And there was a patient who, like, I’m not going to go into details, but she was really struggling to communicate her emotions and couldn’t verbalize what she was going through after a lot of pretty awful experiences in the healthcare system, being denied access to care, being doubted, and things like that that really put her just through a lot of turmoil that was completely unnecessary. And so she found Chronically Me through social media, and she was able to connect with other patients and connected with me.

00:09:42 – 00:09:59 Sophie Shah

So I had several one-on-one meetings with her, and I was talking to her about my own experience and just connecting and what I’d learned. And I helped her a lot through her process. But through talking with her, I gained so much insight into even more of the burdens that patients were carrying, and it helped a lot in the creation of more tools.

00:09:59 – 00:10:30 Sophie Shah

But beyond that, I saw that as she eventually published her own story with chronic illness on our website and then became more engaged in the forums and was able to learn, then she later shared with me she actually was led to a diagnosis that she had been searching for almost five years because she came across our platform and she was able to connect with other like-minded chronic illness individuals who had some more symptoms that were not completely objective or mismatched with the traditional diagnostic frameworks.

00:10:30 – 00:10:54 Sophie Shah

And so with that, she really found this sense of belonging that she later conveyed to me. And that was really amazing. And she even shared that she was able to finally stand up for herself in a medical setting and was able to communicate for the first time fully with a doctor without so much trepidation. And I thought, I just thought that was really amazing. And I think that was definitely a moment of like, oh, that was what this was all kind of for, I felt like.

00:10:55 – 00:10:55 Nitin Bajaj

That’s amazing.

00:10:56 – 00:10:56 Sophie Shah

Yeah.

00:10:57 – 00:11:10 Nitin Bajaj

Now, this is a lot of work. This is a lot of emotions as you’re helping people bring their voices forward. What do you do to kick back, relax, de-stress?

00:11:11 – 00:11:35 Sophie Shah

Yeah, I would say I tend to recharge very creatively. So I love to read. I’m reading such amazing books right now. It’s amazing. I love to write. I love to just immerse myself and talk to other people and connect. I also love baking. I love art, you know, all the normal things. And so, yeah, I think I love just being creative and getting to express myself in that sense as well.

00:11:36 – 00:11:39 Nitin Bajaj

You mentioned books. Is there a favorite you would like to share?

00:11:39 – 00:11:50 Sophie Shah

Yeah, I think one that comes to mind that was really eye-opening, it’s called Being Mortal by Atul Gawande. I don’t know how to say his last name.

00:11:50 – 00:11:50 Nitin Bajaj

Gawande?

00:11:51 – 00:12:21 Sophie Shah

Yeah, Gawande. And I thought it was just a really amazing book. And I think it really pointed out some interesting points about just the inevitability of aging and death, but kind of where things mismatch in balancing quality of life, but also like the reality of medicine and how we’re excelling at treating acute illness, but maybe not this overall quality of life in patients. And so I thought that was really interesting. And it definitely aligns with all the stuff I’m trying to achieve with Chronically Me.

00:12:22 – 00:12:29 Nitin Bajaj

I agree. Now, onto my favorite part of the show, we call this the one-line life lessons. Sophie, I would love to hear yours.

00:12:29 – 00:13:00 Sophie Shah

Yeah, I think my biggest one, and I’ve talked about this before, is start with one. So it’s just this idea that I think so many people get hung up on trying to make a huge impact and, you know, start with international platforms and all these things. But I think where amplification and all these real impacts starts is with just starting to try to better one life at a time and seeing where that takes you and riding that ripple effect of impact. So that is probably my biggest one.

00:13:00 – 00:13:12 Sophie Shah

And then after that is likely if something is confusing to use, it’s badly designed, I think is a big one, especially in this whole space of creating tools that are fit for patients.

00:13:13 – 00:13:26 Sophie Shah

Begin with listening is another huge one that I really subscribe to because I think there’s just so much power in being able to listen to other people and not talk for them and let them take the center stage and advocate for what they need.

00:13:27 – 00:13:40 Sophie Shah

I also think good intentions do not fix bad infrastructure is a huge one I live by. And the last one would be consistency beats intensity every time. Yeah.

00:13:40 – 00:13:58 Nitin Bajaj

Amazing. Again, kudos to you for having that wisdom, that clarity at such a young age. And this is proof that inspiration can come in all different shapes and sizes. And you’re a living testament to that.

00:13:58 – 00:14:15 Nitin Bajaj

Sophie, really appreciate you making the time to share your journey and story, but most importantly for what you’re doing for the community, for people that don’t have a voice and giving them an avenue, giving them a community to belong and give them hope. Really appreciate what you do.

00:14:15 – 00:14:28 Sophie Shah

Thank you so much. I was so grateful for the opportunity to speak here and connect with you and get to share all this. And I just hope that, you know, everything can hopefully go in one step in the right direction for all these people who really need it. Thank you.