Podcast Transcript: Partnering with Patients on Medical Innovation

By Sacha Heppell - December 02, 2020

 

PODCAST NOTES

In this episode, we welcome Tina Aswani Omprakash, public health advocate, speaker, and the world-renowned, award-winning blogger behind Own Your Crohn’s. Tina courageously shares her powerful story of living with Crohn’s disease and why she decided to come out to her community about the severity of her condition. She tells us about her impactful role as an advocate and we explore how patient advocates can work together with medical startups to fuel patient-centered innovation and develop breakthrough technologies that tackle the unmet needs of IBD / Crohn’s patients.  

Curious about what’s possible in the field of IBD healthcare with the recent advancements of digital technology? Tune in to find out! Tina also shares valuable advice for newly diagnosed IBD / Crohn’s disease patients, particularly regarding the mental adjustment it requires, as well as her vision of hope for the future of treatment.


Visit Tina’s website: www.ownyourcrohns.com

Follow her on Instagram: www.instagram.com/ownyourcrohns

Follow her on Twitter: www.twitter.com/ownyourcrohns

Connect with her on Facebook: www.facebook.com/ownyourcrohns

 

PODCAST TRANSCRIPT

Sacha Heppell

Welcome to Who Would Have Thought my name is Sacha Heppell, Chief Marketing Officer of SmartTab, and I'm hosting this podcast with Robert Niichel, our Founder and CEO, Roberts background is in leadership and management of pharmaceutical research and development. He founded SmartTab in 2016 to develop novel drug delivery systems at our lab in Denver, Colorado at the Catalyst health tech innovation center. Today, Robert will speak with an extraordinary patient advocate who courageously shares her story of living with IBD. She takes a stand for the IBD community around the world. We explore how respected patient advocates can come together with medical startups to fuel Patient-Centered innovation, and develop breakthrough technologies that tackle the unmet needs of the IBD community. Listen to the incredibly challenging journey of navigating life with Crohn's and a vision of hope for the future of treatment. With that, I'll pass it over to you Robert to introduce our honorable guests today. Tina Ashwani Omprakash.

Robert Niichel

Thank you Sacha, it is my pleasure to welcome Tina Ashwani Omprakash, a respected public health advocate and 14 year Crohn's patient known globally for her award winning blog on your Crohn's. Tina is an avid speaker and advocate for chronic illnesses, disabilities and life saving ostomy surgery. We are honored to have her join us today to share her story and vision for the future. Welcome, Tina, and thank you for being on the show today. Could you start share your story with us? Maybe starting with your background?

Tina Aswani Omprakash

Sure, absolutely. So I was diagnosed with Crohn's disease, I was actually originally diagnosed with ulcerative colitis, which is another form of inflammatory bowel disease back in 2006, almost 15 years ago this January. So it's been quite a long journey. And as I was mentioning earlier, my diagnosis was actually changed from ulcerative colitis to Crohn's disease about five years in. So approximately 10 years ago that was changed. And the reason why was what had happened to me is originally I had disease in my rectosigmoid area, so mainly in my rectum and sigmoid colon. And it wasn't typical of Crohn's disease. It was you know, it didn't have skipped lesions, it didn't have granulomas, it wasn't in the small bowel. So there's no indication other than the fact that what runs in my family is really Crohn's disease. So this disease took my father's life, unfortunately, and my aunt in New Delhi, her life as well a few years after my father, so it's been a long journey. But I'd say about five years in my diagnosis was changed because I started to develop something called fistulous. That's perianal fistulizing Crohn's disease, and I was originally diagnosed at 20 to come the age of 27, 28, I started having these fistulas. And this was after significant surgery already. So because I had been told I had ulcertive colitis, and it had gone severe became pan colitis, I needed to have surgery and I had my colon removed when I was 24, I was given a temporary ileostomy bag and from there, I was given a j pouch, the J pouch is what started causing a number of problems. And that's where my disease began fistulize. And just so it's clear for audience what official it really is, is it's like an abnormal tract or a tunnel that goes from your intestine into another body part or out onto the skin. So mine were actually mostly rectovaginal officialize. So they were going from the rectum to the vagina. And that was a pretty, I would say probably the most harrowing component of my Crohn's disease. But yeah, my journey has been fraught with multiple surgeries, about 20 of them. I live with the permanent ileostomy bag now, I am on a biologic since the last five and a half years that's finally working and helping me stay out of surgery. And I've been in and out of remission since.

Robert Niichel

Yeah, well, that certainly sounds like wow, I mean, that is quite a journey, but it sounds like there is some success. Now. Now let's talk a little bit about you know, expanding on your story, what was it like coming out with your story and you know, telling people and what was that like coming out with IBD story,

Tina Aswani Omprakash

For the last longest time, I was not very comfortable with it. But what was going on was I was researching a lot. And I was learning a lot because of all the different manifestations of this disease that I was having, I had all sorts of extra intestinal skin joint I manifestations, I learned a lot about this disease. And, you know, when you go through so much as a patient, you start to become an expert at the disease. And I'd say, Come 2014, so about eight years into my diagnosis, I was like seeing on Twitter, some patient advocate speaking, talking and engaging with companies or with doctors. And I was like, Hey, I could do this, like, this is something I could really do. But I was kind of on the sidelines, because and a silent observer, because I was, I was scared, I was really scared to talk about my disease, this is a very stigmatized disease, as you can imagine, because it deals with your bowels, plus, it hitting so young for me and for many patients makes it very hard to talk about. And I had, you know, always hoped or been under the impression that I'd be able to, you know, someday go back to my wall street career, which is what I lost as a result of this disease, I tried to go back in between surgeries that didn't quite work out. And you know, this is not something do traditionally disclose when you're working, you know, some people do, it's really a choice. But to come out with the severity of my disease is it's, in some ways, it's very exposing and makes you feel very vulnerable. But there's another component to this that I talk a lot about in my advocacy work is all those things are fair and fine. But the real kicker in all of this was my culture. I'm of South Asian background, so my family's from India and Pakistan, we don't talk about these things. You know, there's a lot of internalized ableism in my community, and not just in my community all over Asia, where we really don't talk about anything that comes across as a quote, unquote, flaw. And a disease unfortunately, looks like a flaw. And it's like, you talk about your successes in life and your goals and your ambitions. And but you know, when it comes to a bowel disease, oh, my God, if you're exposing that, it's just like, what are you doing? So I often say this is it was social suicide for me to come out with my story. And I knew it would be. And it meant that a lot of my community would disappear, asking what the heck I was doing, and why would I why I would actually reveal something like this. But what people don't understand is revealing and talking about it, and not suffering in silence, and in shame is so empowering. And there's so many people like me, not just of South Asian descent, you know, of Arabic descent of all sorts of Asian, Latin American descent, African descent, that have this disease now, and they're not able to speak about it openly. I get so many messages every single day, you know, because my whole thing when I was coming out with my story is I see anybody, not a single person who looked like me, forget about pharmaceutical ads, forget about, you know, patient advocacy organizations, nobody around the world was talking about my condition of my skin tone. And I was just like, this was really earth shattering. For me, it was, it was so hard for me, my husband would have to push the publish button on my social media stories or on my blog posts, because he felt so exposing to me and made me feel so vulnerable. And I knew I was going to lose a lot of friends in the process. But what did I end up gaining in the process is so much more, you know, there's a whole community out there that I can help support and the whole community out there who cares about me, and my well being and it's just so freeing to be able to be myself, you know, unapologetically. This is, this is a huge part of me. I'm not saying it's all of me having Crohn's disease, but it's a it's been a huge chunk of my life. There were 10 years of my life that I was just dealing with flare up after flare up surgery after surgery, and how I could just leave that part of my life, you know, sort of buried it felt impossible to me, it felt like I was living a lie, and I couldn't live like that anymore. So that's really why I came out. And I think the impetus behind it was really the Crohn's and colitis foundation and I had been working together here in the Greater New York chapter for some time on and when I first got into remission, In the clinical trial, I started volunteering. I was like, you know, I need to keep myself busy now that I'm not constantly in the hospital, you know, are constantly in the ER. So I started like, running support groups with them. And you know, during that time I met all these women like in a women's support group in Manhattan, who didn't feel ashamed of their disease that way that I did, who were able to have fruitful relationships with their partners without feeling guilty or feeling ashamed for putting their partners in this situation. It was so empowering for me. And even though I didn't entirely share my story, because I was afraid of scaring women away in the process, it was one of those things for me, that made me realize there is power in my story. And eventually, I did feel comfortable sharing it. And the foundation asked me to be their honored hero in 2018, for their take steps walk, which is usually about 700 - 800 people. And in that process, my story came out all over social media, it came out, I spoke in front of crowds, it was released everywhere, even publications picked it up. And that's really how advocacy work started, companies started asking me to write articles, once they saw my story and realized, you know, I had a story to tell and a powerful one at that, too. So that's really how my advocacy journey began. And I, I'm proud to say it'll be three years in March that I've been doing this work, and it's felt very rewarding and very meaningful to me.

Robert Niichel

Yeah, that that is quite a lot of courage to come out and put it all out there for everyone to see. And let's talk a little bit more expanding on that. So once you kind of told the world about that, at what point did you realize that you weren't going to go this alone, right, you're going to support the millions facing the challenges that come with living with IBD? And really about how you went about that. And then also, what has now, you know, made all this possible to really expand it across the advocacy groups and the social media?

Tina Aswani Omprakash

Absolutely. I think those are great questions in the sense that in the beginning, I sort of started out not knowing that this was going to lead to such widespread advocacy work, in the beginning was just all about sharing my story, feeling like people could relate. And people could feel comfortable comfort in in my story, and knowing that there was somebody like them going through something similar and not feeling completely ashamed about it. So that's where my journey first started as an advocate, but it transformed, it transformed really quickly, I think, you know, after my story came out, lots of publications started asking for my story and start interviewing me. And that started changing the ball that started changing the game in the sense that now I was working with the National Office of the Crohn's and colitis Foundation, I was working with the United ostomy associations of America, I'm working with other nonprofits to really help reach different audiences and not just related to Crohn's, but I have a number of digestive ailments. I have irritable bowel syndrome, I have gastroparesis. And I also have small intestinal bacterial overgrowth like this whole dysbiosis of my GI tract. So different organizations have wanted to work together to make sure we are meeting the unmet needs of you know, a variety of communities that this isn't just about a certain race or certain culture, that we're really reaching out to different audiences around the world. So that's how, that's how I started getting like more of a widespread reach, I was also reaching out to a lot of communities abroad as well. So I do support Facebook community out of India, that's based on inflammatory bowel disease on Crohn's and ulcerative colitis, there's really a lack of education in places like India, a lack of access to care. So I've learned a lot about the international spectrum supporting a number of different patients from different countries in Saudi Arabia, to Oman, to Jordan, to hearing from patients in places like Bolivia or Brazil. And you know, it's really all over the world and some of the nuances of their care, their lack of access to biologics, their lack of access to insurance. And so, you know, we think, as patients were often so enveloped in what's going on in our own country, politically, and socially and medically, but there's, there's a plethora of sort of nuances going on around the world. And I got exposed to all that very quickly. And I think that happened because I was really speaking to an audience who's feeling a lot of the stigma and the shame that I felt in my journey and that I continue to feel at times in my journey. So that's really how my advocacy started to like branch out and spread out. I started to work with nonprofits abroad as well in the process. This is when I started working with digital health companies and with pharmaceuticals is really trying to understand because I've had exposure to clinical trials, really trying to understand how we can make clinical trials more patient friendly, more patient centric, but also advising on the different aspects of marketing campaigns or strategies in terms of how we can sort of reach patients to help them understand new trauma treatment options, how we can educate because in this process is I was telling you earlier, I learned so much about the mechanisms of actions of so many of these medications because I had to try them. And I was curious what it was that I was, was being put into my body. And same thing with the surgeries, what is happening to my body? What What is my surgeon doing to my body. So I learned a lot in this process. So I worked now with a lot of pharmaceuticals, yes, but I also work with ostomy manufacturers on designing the products on reaching ostomates and other countries, what they need unmet needs in that community, also in hosting sort of internal discussions with some of these companies to understand what it is that patients really need from some of these digital health companies, from pharmaceuticals from Austin, the manufacturers, and where the gaps lie, and how we can collaborate to really understand the patient experience a little bit better. So I started writing for digital health companies, you know, as part of their blogs, but I also started advising them on things that patients might find, you know, patient friendly, in terms of apps in terms of wearable technology, all sorts of things in the digital health space as well.

Robert Niichel

Yeah, that's really great progress on the advocacy. And then let's expand on that a little bit more. You know, as you get out there, conferences, you speak at conferences, and when you go, so you have the social media, the blogs, and that's kind of one channel, but the conferences seemed like they would be very exciting to go there and meet people in person and speak at those. So maybe you could comment a little bit about what you speak about, and then what the reaction is like with the people that you do speak to there.

Tina Aswani Omprakash

Absolutely. So I'm actually very glad that you asked that one of the first conferences was like a health sort of media conference with the Crohn's and colitis foundation that they held here is very small in New York City. And there were a number of publishers who had come to sort of understand our stories, and get exposure to what Crohn's and colitis are like and how much they affect minorities. That was very, very nerve wracking, because that was the first time I spoke publicly about, you know, the cultural aspects of having this disease, and how that led to so much shame stigma and internalized ableism. For me, that was very nerve racking. Then after that, the foundation gave me another opportunity to speak in Las Vegas in early 2019. At Crohn's and colitis Congress, that was a fantastic experience in the sense that that was my first conference ever, like my first gi conference. I mean, I would, I would read all the content that was coming out of these conferences on Twitter for the last few years. But to actually go there, experience it, that was a whole other, you know, sort of ballgame, and it was such an edifying experience to be able to gain that knowledge. But also the last day, they asked me to speak about my fistulizing disease, my experiences with periodontal disease, with some of the top surgeons and gi doctors around the country. And so as on a panel, and I will have to say that was one of I think that was one of the biggest moments of my advocacy career to date. For one, that's a hugely stigmatized topic, as we've been talking about. Plus, there's not much knowledge about it. No one forget racial and ethnic minorities, no one wants to talk about periodontal disease. So really, doctors won't be hearing from their patients about how debilitating How embarrassing how psycho socially jarring This is how dehumanizing it feels to have one of these even. And so to be given that opportunity to share that and have providers really understand the patient perspective, and really understand how important mental health is and taking care of the patient's mental health during a time like this is I felt like that was one of the most rewarding aspects of my advocacy journey, though that thus far, I will say it was extremely hard for me to share in front of that many people. But I felt like it was one of those things that needed to be done in order for the betterment of this community. And I even ended up telling them, and this is something that I continue to push today, we really need to see primary endpoints on clinical trials to be officialized. And disease. It's very severe complex disease, I understand that. But there's 30 to 50% of Crohn's disease patients on average who have these and it's an unacceptable way of living, it's it's there's no quality of life, it's completely psychologically jarring. We need better treatment options for this. So to be able to bring that forward as a patient feel so so rewarding. I can't even emphasize that enough.

Robert Niichel

Yeah, that's quite a I mean, that's quite a, you know, encouragement to be able to talk openly about that. And let's expand a little bit you mentioned like the mental state with these people. So if you're newly diagnosed with Crohn's, it can obviously be quite a shock and you know, a lot Have people talk through the physical part of it and the treatments, but what the mental state, you know, it's a shock to the mental state as well. So what can you do? or What advice would you have for people who are newly diagnosed to, you know, thrive or adjust while living with a new diagnosis of Crohn's?

Tina Aswani Omprakash

You know, that's a fantastic question in the sense that, you know, I think I was very fortunate because even though as a minority community, my community does not really believe in getting yourself mental health, it's one of those. It's another taboo subject, it was something my mother believed in. And when I first got really sick at the age of 24, she was like, Tina, we're finding you a therapist, she put me into therapy, she insisted on taking me to support groups, whether they were, you know, in the hospital related to IBD, or related to ostomy surgery, whatever it was, that was the driving force for me to get mental health care. And I can't even thank her enough today, because mental health is, how do I even emphasize this, the physical journey is half of this, you know, the mental health journey is the other half. And that's what people don't realize is, as you're struggling to make it to the bathroom, those 40 times a day, or whatever you might be facing, your mind is also like, Oh, my God, what did I do to deserve this? Oh, my God, like, how, how did I even get to this place? I'm 22 years old, I should not be like going from college onto Wall Street, and then out and seeing, you know, potentially, the days of your death closing in on you, like I've been sort of had I've had near death experiences four times with this disease. It's completely unacceptable at a young age to not have mental health care alongside this disease. And I think the push towards gi specialties, especially some of these academic centers, having gi psychologists in their office, and coordinating care between the GI and the psychologists is one of the best things that I think has happened to this field in the last several years. I understand it's not easy for most academic centers, or even community centers to be able to pull this off. But it is absolutely necessary. There is just no way you don't have a mental health journey with this disease.

Robert Niichel

Yeah, that makes sense. It's amazing how closely interrelated they are. And then talking about the kind of the future, you know, we're working on developing Patient Centered therapies here at smart tab. And then what do you see as some of the unmet needs for patients today with IBD Crohn's, and their experiences with with the treatments today?

Tina Aswani Omprakash

So I was alluding to this a bit earlier, I think we need definitely more endpoints on as far as treatment goes. But aside from that, I think unmet needs, one of the biggest ones is outside of this pandemic. Of course, as young people, we want to see your friends, we want to go out to dinners, we want to go out to bars, we want to have thriving careers and get through undergraduate degrees or graduate programs, we have lives to live we have dreams that we would like to fulfill that this disease like pulls the rug out from underneath our feet. Not having that day to day sort of a balance in our health or not having that sort of certainty around our disease really takes a lot of quality of life away from us, you know, what I would like to see more of is in the future, obviously, you know, something more related to precision or personalized medicine? Yes. But how do we get there, I really would like to see some kind of wearable technology that's not super cumbersome, that helps you understand when you're going to flare up, or when you're heading in that direction, something that's looking at the chemicals in your body, and it's like oh, this that or the other is spiking. Some of these inflammatory markers might be spiking right now with that, like what even if it's a pinprick that patients with diabetes have something that can tell us that look, we are on the verge of potentially flaring up and that, you know, tomorrow, maybe the next week, we might not have a guarantee on the next week or two. But at least we will know that something's coming our way so that we can sort of mentally prepare for it. And also, you know, pull out of plans or you know, ask for accommodations at school or work in a way that isn't setting or sudden or jarring to our employers or to our school staff. I would like to see something that gives us a little bit more certainty with our disease.

Robert Niichel

Yeah, that makes sense. And then Are there any of these things that are currently being developed that, you know, you with your advocacy work or the conferences that you hear about that to overcome these things, any new technologies out there?

Tina Aswani Omprakash

Yes. So I mean, I'm in talks with a lot of companies. But I do have like non disclosure agreements. But um, so that's the only thing. But I am in talks with different companies with regards to different kinds of technologies or different kinds of medications that we might be looking at over the next couple of years. I do advise on these things, what kinds of things to patients with, like what patient preferences are, whether it's for clinical trials, whether it's for digital health technologies, I do advise on all sorts of these things, as a patient with a lot of experience, what my personal preferences are, and what I think just from hearing from the community so much what I think other patients would prefer, as well. So yes, I think we are headed in that direction, we just need a bigger push. And obviously, these technologies take time to develop, and there's several iterations to them. But if we can get patient collaboration from the very beginning, I think that's how we minimize some of these, you know, iterations of or evolutions of these technologies or medications, so that we can already you know, have a decent product when, when there's patients advising on them.

Robert Niichel

Yeah, very good. So building on that, I'm going to pass it over to Sacha now. And we'll continue on with our conversation. Okay, take it away, Sacha.

Sacha Heppell

Yeah. Thank you, Bob. So Tina, I want to ask you, on this topic of really starting with the patient in mind, what does Patient Centered innovation mean to you? How can companies like ours take a patient centered approach to innovation, to really listen and work inside of a context in service to the end user, the patient? And what difference does it make to understand where the patients are at? And what their experiences to listen to them and their needs? from the get go as a foundation to innovation?

Tina Aswani Omprakash

I think that's a great question Sasha, around pace, patient centered innovation, I think what Patient Centered innovation really looks like is involving the patient from the get go, as I've been talking about, but how do you do that? How do you effectively do that? So I think when it comes to certain technologies, when you are broaching ideas around certain technologies, or different ways of delivering those technologies, what I think is very useful. And I've done this many times as, as an individual advocate, but also as a patient. What I've done a lot is I've advised as an advocate. But I've also sat on advisory boards in a group to sort of hash out some of our differences in what we think might work, what might not work. So as a team come up with solutions, but I've also sat in patient focus groups, as a patient sort of saying, This is what works for me, and I'm sitting there with a number of other patients sort of saying, no, this won't work for me, because I have privacy concerns, or this will work for me, because it's easy to use, sort of hearing that from a variety of patients is fantastic. But then the advisory boards are great, too, because that will have patient advocates who are obviously experts in their disease, but also experts in the marketing strategy components. And I've seen a lot of this, but he also has a lot of patient organizations like patient advocacy organization, sort of represented representatives, who have the inside scoop on what's going on in the patient world as well. So I think having some sort of balance of these having individual patients or advocates speak about it, but then also having advisory boards and focus groups is really nice way to come up with a different sort of approach to how do we meet these unmet needs from the very beginning, you know, how do we understand Say, say your platforms around drug delivery? What would be the best way to get those medications to the patient? How would they like that care delivered to them get that opinions in the very beginning and get it from there many parties? I think that's what the most important thing is. And in IBD, I think what's important is some there's such a wide gamut of disease, there's patients who are on five aasa drugs, and there's patients on biologics and small molecules. And then there's the in between as well. Do patients prefer the subcutaneous injections? Or do they prefer infusions? Do they prefer oral delivery of medication, these are all things that we need to consider as a group. And I think it's very important to have patients sort of sitting at the table advising that from the very beginning and sometimes what I think is also important, and I've done this with pharma at times, as have some of the doctors and scientists who work within pharma, engage with us and ask those questions of us as well, so that we can advise on the technical components as well. So with digital health, that might mean some of the engineers interface with us to really understand the crux of this disease, and how it's impacting us and what sort of solutions they can come up with based on that. So I really think this is about bringing in the patient To help the company understand how they can deliver the best solutions.

Sacha Heppell

Yeah, I agree completely. I think that's completely right on and just do it to have an extraordinary outcome. So this podcast is really about the future of digital health innovation. And so I, you know, I want to see from you like, what do you see as possible with all these advancements of digital technologies and healthcare, what's now possible for treating to target personalized medicine, precision medicine? What do you see about that?

Tina Aswani Omprakash

I think that that's a fantastic question. And I think I was alluding to it a little bit earlier, talking about personalized medicine. But treating to a target, I think is a subject that patients really don't know what that's all about. Here's the thing, and I hear this from patients here in the US, but also abroad, this concept just doesn't seem to stick in their mind, they can understand the concept around shared decision making. But there's this sort of reluctance to treat to target when it comes to inflammatory bowel disease. And I I'm I was a victim of that as well, like, you're almost like, resisting the biologic or you're resisting the immunosuppressant because you've heard so much negative feedback online, so many scary stories online, or you see that 1% risk of this, that or the other, that's scaring you from achieving the life and the goals that you want. And I think treat target really needs to be explained more in patient friendly language. So what we're trying to do here is make sure that before your disease gets super, super aggressive, where we're monitoring, we're monitoring the dose of your medication, we're monitoring your disease, to see if there's any breakthrough, and we're adjusting the dose based on that. I don't think a lot of patients understand that they, they would rather get to a point where they're already really sick. And then the medication may or may not work that's happened to me many times, but you're like, Oh, my God, how can I go on this biologic at age 24? I for the rest of my life, what is that going to look like? But I think there really needs to be a lot more patient education on this. And by patient education, I mean, patient testimonials also on what treat target looks like and how, as someone like me, who's done both sides, the more reactive approach, and then the more proactive approach, having seen both sides, to be able to speak to how much proactive disease monitoring has given me my life back and given me quality of life back, it's just so much more, I can do so much more than I could before. Because when I get my colonoscopies when I get my MRIs, they're looking every single time to see, is there even a little bit of inflammation? And if there is, how do we sort of nip it in the bud so that we can make sure that this medication continues to work, and that we can prevent surgery? I think that that really has been the goal for me, because I've already had so many surgeries. But I think what patients are really struggling to understand is I haven't gone to that severity yet, how can I go on that medication. So there really has to be a lot more patient targeted education around this. And I really think it needs to come from people like patient advocates, partnering with physicians, partnering with the industry to sort of under help them understand, look, this is not we have an interest in making sure you feel better, because you can do the things that you love again. So I really I really am a firm believer in proactive disease monitoring and treating to a target based on my own experiences.

Sacha Heppell

Yeah, that's wonderful. And this whole concept of patients as partners, can you share more about that? I know, you've spoken a couple panels about that, and just about collaborating for better care. What does that look like?

Tina Aswani Omprakash

Absolutely. Um, so it's it's funny that you asked because there's a conference called patients as partners that I that I spoke at, and that specifically was on diversity and clinical trials and how we can engage more diverse populations. And I think that is also a consideration not just for clinical trials. But how do we engage diverse populations in digital health technologies, and in digital health technologies that will help us treat to target or help us proactively monitor disease, and therefore make sure we're adjusting our doses accordingly, or however our doctors want to pursue it. So I can definitely see that sort of collaborative experience happening between the industry outside of just clinical trials as well. But as far as your question goes, I think I would like to see more and more engagement in terms of working with the industry having a seat at the table, like I was saying earlier, but I think what's really important when it comes to patients as partners, and I can't emphasize this enough Sasha, in our industry, what's going on in patient advocacy, especially during the pandemic and I have to share this is you know, there's There's a lot of people who think they can be patients and advocates at the same time. And there is a high bar for this, I can't overstate that enough. It is something that I've definitely spoken to patient advocacy groups about in the past, there's a high bar for patient advocates. There's no certification process, but we are expected to know a lot about this disease, be able to liaise with physicians understand what they're speaking about, a lot of us are well bred, have interviewed a lot of people about their diseases, or have worked extensively with companies. I think, you know, in today's day and age, especially during the pandemic, there's been a lot of new voices coming out, and we need those new voices. But at the same time, we also need to vet and understand who's going to make a good partner who's good to bring and give a seat at the table, because this is just so important. And again, I can't emphasize this enough, our futures depend on this as patients to have the right people sitting at the table, sort of driving that change around patient education is very important. The people, the patients who are the most informed, who really care who are really passionate about this, because of their own experiences, I think are the ones that you bring to the table because they really have a vested interest in driving that change and having the best interest for patients. So I would really like to see more of that vetting process, perhaps a certification process down the line, just to make sure that we have the best patients, patient advocates, patient thought leaders representing us, and really representing that change that we might be bringing about in the industry.

Sacha Heppell

Yeah, what an incredible responsibility as a as a patient advocate.

Tina Aswani Omprakash

It is, it is. And it often appears to be glamorous, because we're on social media, and we're sharing things from other people and sharing aspects of our stories. But it's really, really hard work that, you know, nobody sees what how much goes into this behind the scenes, how much we teach ourselves. For me, one of the impetus is behind me going for my Master's Degree in Public Health has been patient advocacy, I truly want to see health disparities disappear, I truly want to see like better endpoints better defined randomized clinical trials. That's why I chose to pursue a master's in public health because as a patient, I have the patient experience, yes. But to have the public health sort of background in helping to advise these companies. To me, that's invaluable. And that's why I'm doing this because I feel like I can bring so much more to the table, because this is such an awesome responsibility for us to be caring.

Sacha Heppell

Yeah, truly extraordinary. Thank you so much, Tina, and I just want to get your vision, you know, this is kind of my last question here. Just what is your vision for the future, the next five to 10 years from now? You know, can you paint a picture of what you see that the future holds for IBD treatment? From your perspective? You know, what are the challenges you hope we overcome? And what are you most excited for? What What does that future look like?

Tina Aswani Omprakash

You know, I'm so glad you're asking about that. Because the one word that comes to mind when I think of the next five to 10 years in the IBD space is the word hope. Really, um, there's just I have so much hope for the future. And the reason why is just what was it 2008 just 12 years ago, my only options were Remicade and Humira. Now we have a whole slew of medications and a whole arsenal of medications. And we're preventing collect me in so many patients as a result, there are so many medications in the pipeline, so many even microbiome, modifying medications, all types of different pathways that are being explored by scientists right now. All sorts of digital technologies that are supposed to improve our quality of life that we're working on right now. And I think for me, that embodies hope. I think that over the next five to 10 years, we are going to see readmission rates go up, you know from that 30 to 50% that we're seeing now with biologics and small molecules, I think we're going to see better quality of life for patients. I think we're going to see more understanding around how diet and microbiome affects IBD I think we're going to see more digital technologies that will help sort of investigate and understand like I was saying earlier, when we might be flaring or when we might be having certain symptoms that might be measuring, you know, bowel sounds, whatever they might be measuring. All I can see is a ton of hope in the future. And you know, coming out of the last 15 years with this disease seeing my father in childhood, only having prednisone is his option. He took prednisone 15 years of his disease, it led to colorectal cancer down the line for him And he passed away when he was my age. So having seen that him pass away in his 30s. And now me gain quality of life and survived. And now, in recent years seeing so many patients, avoid surgery, or even seeing patients have successful surgeries and live the kinds of lives that they want to live, I all I can see is a ton of hope for our future and just better quality of life a better grasp of this disease, huh?

Sacha Heppell

Yeah, definitely hope. Hope is something we can all ask for right now. For sure. Yes, yeah. And that's extraordinary. Tina, you are truly an inspiration. And I so appreciate who you are. Just the difference you make sharing your story so powerfully, even after all you've been through, you know, for me, you're an advocacy innovator. And the work you do taking a stand for every patient, breaking down the stigma, social cultural barriers, and health disparities, truly appreciate the work you do for the IBD community and beyond. You're shaping the future of IBD with your voice and making a difference for so many in the process. So thank you, and I hope you have a wonderful rest of your 2020 year.

Tina Aswani Omprakash

Yes, you too. Sasha and Robert, I, this has been a wonderful talk and quite, you know, an opportunity to work with smart tab. I'm really excited to see what technology is smart tab brings to us in the future.

Robert Niichel
This has been wonderful. Thank you very much.

Tina Aswani Omprakash

Thank you.

Sacha Heppell

One last question. How can people reach you and stay connected to your blog?

Tina Aswani Omprakash

Oh, yes. So people can reach me via my blog ownyourcrohns.com or via Facebook, Instagram, and Twitter. My handle is at @OwnYourCrohns so you can follow me you can engage with my posts, you can learn some of the patient education content that I share and some of the updates that I share about my that might be relevant. So I really look forward to hearing from you all and working with you all to get a better grasp on inflammatory bowel disease.

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