Empowering Patients with Digital Health Solutions: An Honest Conversation with Meredith Mangold, CPXP
In this candid interview, Dr. Caroline Niederman sits down with Meredith Mangold, CPXP, Founder & CEO of Empower Health Strategies, to explore the transformative intersection of personal advocacy and professional innovation in healthcare.
Meredith Mangold & Dr. Caroline Niederman: Full Transcript
Carrie Niederman: When I got onto LinkedIn, I decided that it was time to meet other people within the patient experience community and Meredith Mangold, who's here with me today, we connected pretty early on in my LinkedIn world and journey and decided to start having some conversations to share with others.
So I'm thrilled to be joined today by Meredith for however this conversation unfolds. I think that where we wanted to start was really just talking about how we’re both patients. I think there's a saying out there that everybody's a patient and we're patients, and probably in a more pronounced way than others.
And so what empowers us now? And you have this great business, Empower Health Strategies. Where does that come from?
Meredith’s Journey with Severe Ulcerative Colitis
Meredith Mangold: Thank you so much for having this conversation with me. I remember I was really excited when you reached out to me.
It's almost been nine months or so, and it's been so exciting to watch your journey. It’s always both frustrating, but also empowering to talk to other patients. I consider us professional patients who share our stories, and it's heartbreaking to hear that we go through so many of the same challenges and experience the same pain points.
But at the same time, I feel like when we come together and communicate and help amplify each other's stories, so many other people out there who maybe don't have the platform or as much experience navigating health care can really be helped. We can really help other people and educate stakeholders in the health care industry about how to better serve patients.
My whole patient journey started in college. I grew up relatively healthy, and I didn't intend to get into healthcare. In my sophomore year, one day I was fine. Then all of a sudden, a week later, I was crashing in the ICU. They didn't know what was going on. And so I had an emergency colonoscopy, because I was having gut issues, and they realized that I had severe ulcerative colitis, which is a form of inflammatory bowel disease, which is an autoimmune disease.
So my immune system was attacking my large intestine. I was on the verge of sepsis. I don't remember the first two weeks or so, because I think my brain wanted to protect me from the trauma.
I was thrown into the deep end of our health care system. It was not at all what I intended to do with my life. I was studying Arabic in college at Georgetown, and so it was quite a surprise to me. But luckily, I was hospitalized at Georgetown Hospital, so I just walked across campus and was able to have a really great care team there.
I was hospitalized for about two months in the beginning, and then that became the start of my journey of in and out of the hospital, in and out of school trying to stabilize for periods of time. And luckily I was able to avoid emergency surgery at first, but then ultimately the meds weren't working.
And so I had a surgery called a total proctoclectomy. They removed my large intestine, which is a fun little cocktail party tidbit that I don't have a large intestine. I was told that it would be curative, which was not correct. I really didn't realize at the beginning of my journey when I was diagnosed the chronic nature of IBD, inflammatory bowel disease, and I really just had to figure that out through my own experience.
After my surgeries, I still wasn't feeling well, and was still in so much pain. And then as I'm sure everyone with chronic illnesses can relate, it's so hard to find answers, especially with multi-systemic illnesses, because everyone's journey is different and it presents in different ways. After all this, I knew that I wanted to try and improve patients’ experiences in the healthcare system so that they wouldn't have to go through all the trauma that I've been through.
It took me probably a decade or more to figure out how to really advocate for myself. Because we grow up thinking, okay, the doctor knows best, so I'm going do what they say. And and because of all of that, one of my main goals through both my personal empowerment journey and my professional journey is to emphasize the need for participatory medicine, which which is a school of thought that patients should be full and active participants in their healthcare journey.
One of the things that I love to do when I’m personally interacting with other patients is to educate them about how they can do that, and that they can ask questions. They can tell doctors what they want to do with their treatment plan. For me, empowerment is knowing that I can participate in my health care decisions and and improve other patients’ journeys too.
Empower Health Strategies: Equipping Digital Health Innovators
With my company, Empower Health Strategies — empowerment is really important personally and professionally. I work with digital health innovators to help them create solutions that are actually meaningful for patients. A lot of the time these tech professionals get really excited about new tech and want to create something really cutting-edge, but they never actually talk to patients in the first place.
Which in any other industry, you’d think that would occur. You talk to your consumers and figure out what they need. The reason I called my company Empower Health Strategies is because I'm empowering innovators to empower patients to make sure that they create something that will actually improve patients quality of life, make them feel seen, supported, and empowered.
That was a bit of a long answer, but I know it's engaging with other people who really understand what that chronic illness life is like and how that changes your life trajectory.
So I know that you had a different career that was so interesting. I'd love to know a little bit more about how you came into the advocacy space, because I know when we first connected, we were talking about ways that you could engage in the space. I know we both have a passion for educating healthcare providers and medical students about what the patient experience is really like. We haven’t talked in a while, so what’s been going on?
On Living with ME/CFS & the Unseen of Invisible Illness
Carrie Niederman: I appreciate that background because I learned more about your story. I think that the things that struck me about your story—you're right. One, talking to other patients is either really exciting or it's depressing because you're like, wow, I’m not alone, which is great.
But two, this is going on for many people. And I think the things about your story that I jotted down was one is that, like me, you suddenly had this acute episode where you were Meredith studying Arabic. And wow, Arabic — all the power to you. I couldn’t do any of that language stuff.
But, I went from that sort of overnight getting a virus, going from being an active person to having chronic fatigue syndrome. I'm a retired veterinarian, and we were taught in school that we're empowering people.
So we're talking about anatomy, and when you do colic surgery, abdominal surgery on horses, there's always a decision about how much of their intestinal tract to take out. And I had a client, a horse, who had a huge amount of their small intestine removed.
And horses have about 70 feet of small intestine. The colon is about—I'm not going to quote that because I don't know that number—so this horse had about three quarters of it removed, and they didn't think it was compatible with life. But he was still alive when I retired, and his 20s. So he's done well, but it's a thing that needs to be managed. What's also similar about our Venn diagrams is that we have something that's invisible.
Carrie Niederman: No one can tell that you don't have a colon, and no one can tell that I have chronic fatigue syndrome. And that adds to the layers of being a patient advocate. To be understood. I think that's where I came into this space. I’m lucky enough that my ME/CFS is mild, so I was able to continue as a practitioner.
I've had it 17 years now, but during that time, I really wanted to be able to explain how I transformed from that overnight. Now I'm not that person. I'm not that athlete. I can't go running with you. I can't play pickleball. I can't go bike riding. And they don't understand because I could before.
Women’s athletics have changed a lot, but I was an athlete of sorts in my day, and now I can’t do those things and it’s hard for me to explain. So part of it is to have that conversation about how can we be understood both by friends and family and then by our physicians is critical. And I’ve realized during my journey of trying to do this.
Like you, I would be ping-ponged to various referrals, to realize that my own training in veterinary medicine didn't prepare me for that four-legged patient sitting in front of me whose owner would say, “they don’t feel well, I know that, but all of their physical exams are normal, blood work examination is normal, and any other diagnostics are normal.” Then what do I do?
I wasn't trained for that. I would like physicians to realize that they're not going to be able to fix everything, and that's an unrealistic hurdle, but we still need to have some care and we can have that care on a chronic basis. So my lane is getting that level of understanding when chronic illness is in the room.
Identity Loss, Grief, & Redefining the Self
Meredith Mangold: Yes, and imaging and labs don't tell everything. It's your lived experience. It's those unseen pain points that I think are so important for us to talk about—making the invisible visible. And that's also what I do working with digital health innovators is to say, hey, you don't see the moments where IBD patients are alone in the bathroom, just crying. And, sometimes just wishing things could just be over, and it’s so hard.
Can I ask if you had a grieving period when you got sick and went through that loss of identity? Because it's something I still struggle with today. Personally, I had my career track in mind since I was in high school, and knew what I wanted to do. I was a very type A organized person.
Especially growing up in this DC area, you're supposed to know what you're doing and go for it. And also, part of my identity was feeling comfortable writing and speaking and really engaging with people, and now all of my conditions have chronic fatigue and brain fog as symptoms. And I just feel like a lot of that, I've lost, and so I feel like that's part of my identity that I've lost and I still grieve for.
But at the same time I’m—thankful is not really the right word—I have learned so much about myself and what's really important in life because of my journey.
I almost died, and so now I know I don't want to do anything that is not truly meaningful for me, even if it doesn't really meet other people's expectations. Did you have that kind of grieving moment?
Carrie Niederman: Yes, totally, Meredith, and I found that so even though I was able to work for about 10 or 12 years with the condition, I was eventually at a tipping point.
I was aged enough and I just knew that I didn't want to have anything happen to a horse underneath my care. So I retired and I retired for me, it was early. So that loss of—during that time, because my disease was invisible, my clients didn't know. And that was a good thing because then I could continue on, but suddenly it was front and center.
And I had lost that image of being a veterinarian, and I loved my career. And I was lucky enough that I had a longer runway. But that loss of identity and that loss of control… when you're young and you feel like, boy, there's no stopping, and my body is going to just behave, and you're going to be able to move and shake in a way that you want and suddenly you can't…
Then the brain fog and the fatigue those things that are not controlled. They're unpredictable and that's a message that I'm trying to relay is that time is not something that we can control anymore.
So you say, I want to have a meeting or I want to go out, and it's all tentative. There's this tremendous weight of isolation with with chronic illness that then plays into your mindset of what life is really going to look like.
And I haven't been able to maintain a partnership with anybody intimately because it's been too complicated to try to explain. And they're like, oh, this dating's going pretty well, isn't it, so far? And I'm like, you haven't seen me collapse yet. Talk about pain points! See me unravel, and then let's see how they’re going to show up.
And so far, I haven't been very successful at it. Also, I never thought that I would be single at this stage. So it's this sort of full circle.
One question that I have with regard to digital health—and again, my view is fairly narrow, so you need to help me broaden that idea.
But I think I commented this to you in some email exchange, that I've gone to a couple of conferences and they're talking about patient portals and the overuse of that by patients. I know I was never taught, here's our patient portal, other than, here's the portal, make sure you get on with a password. But—short of the message that pops up saying that if this is an emergency, go to the ER—there's no directive that says don't do this, don't do that, this is your limit, that kind of thing.
And now I'm hearing in different scenarios that this is adding to physician burnout because we’re using the portals like email, and now their inboxes are full. So it’s defeating the purpose. What are some of the strategies that you feel are going to help, if any?
Digital Health Innovations & the Patient Experience
Meredith Mangold: To be transparent, I'm not a tech engineering specialist. I consider myself the humanity side of digital health. So I bring that human perspective and the lived experience of patients using these tools. The long and short of it is, I'm not sure that there's an easy fix.
Anytime we're introducing new innovations, there's a process of figuring it out. But also, our healthcare system is already so fragmented and disjointed, and physicians and healthcare providers already have such a burden on them. They have 15 minutes maybe with a patient and have to go all day long. And afterwards, they have to deal with prior authorizations and talking to insurance companies to say, yes, my patient really does these need this medication or this imaging or this lab work for us to figure out what's going on.
In my experience, and I've heard from other patients, some health care providers and health systems are starting to charge for patients to contact their provider. One of my doctors, who's the main one that I would communicate with most, I was asking her: are you going to be charging me?
And she said, the clinic administrators want me to. But I only really message her with a list of things I want to talk about during my appointment. This is a brief update of what's been going on since I saw you last month.
So yes, ineffective patient portal usage does definitely contribute to a physician burnout. But there's still the problem of communication between patients and providers because getting them on the phone or or just having to wait to talk to them when you see them in office is is really hard. I feel like there's no easy answer.
That's one of the reasons why I really believe in collaboration and bringing as many stakeholders into the room as possible. That would be a great world where we could get providers and innovators and insurance people and biotech people all in the same room to say, what can we create that helps all of us and facilitate a more fluid, effective, compassionate healthcare system?
So the answer is, I don't know!
Carrie Niederman: But you brought up one thing that I”m interested in. With your own practitioner, you send a list of the kinds of things that you want to cover. So that’s one way to provide a personal approach.
And I know that when technology is—I'm old enough where I didn't have a cell phone when I was traveling for my veterinary work. But having people give me a heads up so that I could think about it ahead of time was very helpful. So is that one of the strategies—personalizing this portal?
Such as, I'm going to see you next week, looking forward to it. And sharing the things that are on my mind so that the practitioner is not coming into it completely blind.
Meredith Mangold: Exactly. I feel like that's one of the main empowerment tools that I've learned and acquired for myself. I want to honor her time, and just give her an update and also in the know. When you're in the moment, in the appointment with your provider, you’re trying to answer questions and then you inevitably forget to ask them about a really important thing.
And so I always like to send it ahead of time, both for myself so I can get in the proper mindset, but also for my providers so they know what to expect. But it's taken me over a decade to realize that's a really helpful thing to do. And one of the main documents that I've created for myself is my medical resume.
My medical resume has my diagnoses, my surgeries, my medications, and the providers I see. And it's especially helpful when I'm establishing care with a new provider or connecting with providers who are in different healthcare systems—so they can know what's going on. And so I'd say 99 percent of the time they say, wow, this is really great, thank you so much!
Because, especially with chronic illness patients, we have so many records. And so that's one of the things I send via the portal too, so they can just upload it to my chart. I feel like there are ways to figure out what works well for patients, what works well for providers, just by having that conversation of, okay, would this be helpful for me to send this to you ahead of time, so you can start thinking about it? Or do you just want to talk about it in the moment? But that's worked really well for me.
Carrie Niederman: I like that, I think what you just said makes a lot of sense. What works for them? I think back to my journey when. I was going to so many physicians and getting no answers. There wasn't a test. There wasn't an image that was popping up. And my file that I brought along with me was very big.
This is pre-portal time. So I would arrive, and say here! and hand it to them. And I feel like in some ways, that probably was a mistake, because we had 15 minutes. And they're looking at this big file, and by now the top 10 differentials have been completely ruled out.
I don't have Lyme. I don't have mono. I don't have fibromyalgia. And then they're thinking, I don’t know what to do.
And to get back to what I was talking about earlier, in my own training, I wasn't trained to be able to receive that big document in a confined, pressure-filled exam room time. No wonder I was commonly then referred to somebody else, because they were probably thinking, I don’t have time to go through this. I want to help you, but I don’t know how. So I’m just going to pass you on. In retrospect, that’s a part of my journey that I would want to reflect on—that maybe I did more harm by being too organized. It's hard to know.
Meredith Mangold: What else could you have done? You empower them with the information that you've already gone through, all the testing so they don't do it again… But it's true. I don't know. Have you ever seen an an integrative physician who usually has longer appointments and they actually review everything? But of course, they're all out of pocket.
Carrie Niederman: It’s interesting—that’s the sort of lane I'm trying to follow on, is this concept of time and understanding that, yes, as you just said, you can go to somebody else and have a longer visit. For me, just like you—when we talk about fatigue—I get tired.
But the good thing is that if I’m there long enough, they may see me change.
Meredith Mangold: Yes, exactly!
Carrie Niederman: Then they witness the symtpoms. But the other concept that I’ve been working on is: if the structure is such that there's 10 or 15 minutes for a patient to be seen, and that's where we land right now, and it's too hard to unpack that, then I actually would love to have telehealth be integrated into a more standardized program or series of appointment scheduling for people like us where our conditions are relapsing and remitting.
We can't control when they show up. And often, if we have to come into a clinic for an appointment, we're having a pretty good day. We're well enough to get there. So instead, I would love to have a series of appointments at different days of the week and times of day, so you have a greater probability of catching us when we're off.
And then the clinician sees us, they have a better chance to believe us, and then they realize, okay, wait, this is happening. Then we have some common ground. It may not fix us, but it can help us manage better.
Meredith Mangold: Exactly. You said so many things that I have thoughts about. I think that's one of the good things that came out of the pandemic is the accessibility to medical care through telehealth.
Because yeah, I'm in the same boat. I was actually bedbound for about three years recently, and I couldn't go to appointments. I'm still not driving now and like you said, I have really severe chronic pain, and some days you just can't function. I couldn't get out of bed, and finally about two years ago, we put together a really great multidisciplinary care team.
And I've seen all the best doctors here in D. C., and still each one's got to the point, especially in pain management, who said, I don't know what to do with you. And they pass me on. And I found a great multidisciplinary care team at Kennedy Krieger Institute, which is like the PEDS specialty hospital associated with Hopkins, because they were helping me with my Ehlers-Danlos Syndrome, which a lot of physicians don't really know much about. It's a connective tissue disorder, and I remember my first appointment was just telehealth, luckily, because it was right in the middle of the pandemic.
I was lying down over there at the little banquette we have at our table. I could not sit up at all. I could only lie on my left side. Sitting up was so painful. And so they saw me in my element, what my every day was like. And now two, three years later, I have a follow up with them this coming February.
Then they saw me. I can sit upright. I am engaged. And for so many years when I was bed bound, I had no hope that I'd ever have any kind of fulfilling life, ever again. And so for them to be able to see me in my environment, to see how I progressed is really exciting. But at the same time, I've been talking with patients about this all week that you want your provider to see you as you are.
And sometimes, you don't want to look great going into an appointment. Like sometimes, I want to put on lipstick or something just to be like, okay, here’s my war paint, let's go today! But if you look good—unless you have a really great provider who knows you and invests in you—wants to just say, oh you're looking great. And that's a really difficult thing to navigate.
I was talking to a patient the other day who was saying something to the effect of, you don't want to come off as really smart. That sometimes you have to come off a little bit dumb to be taken seriously by a provider, which is so sad. But sometimes that's the case.
Carrie Niederman: Yeah, I think it's just really important to be able to get that full picture when, especially when you're dealing with a chronic illness that then affects all aspects of us, our home life. And who's helping us at home? When you're bed-bound, who's there for you? Because if there isn't anyone, if there's just a dog and a cat—and my dog and cat are lovely, but they can't get groceries for me.
And then it's a partnership. Then they're starting to have some places for there to be help. It’s not curative, but if this is our new life, this is our new identity, we want to be able to be as functional as we can. And getting that window, especially if we're seeing a new provider for the first time, they're just not going to get to know us and we can honor that 10 minutes.
I just think that there are other touch points to follow up. The in-person is very valuable, extremely valuable, but I also think that the telehealth can be leveraged in a way that would allow us to have multiple providers, and maybe we don't need to be bounced around as much.
Part of my joy as being an equine veterinarian was knowing what happened to my patients. And if you're referring people like us, then you may never know. And if you didn't have that continuity of your care team to know that you went from the you being bed bound to now being vertical is so rewarding for them.
I think those are pieces that can empower the whole collective.
2024 Digital Health Trends: What’s Next
Meredith Mangold: One of the big trends now in digital health is remote patient monitoring—with your smartwatch or other kinds of digital devices. And so that's an other way for your providers to see what's going on with you when you're not in the exam room. However, that also leads to the same issue of overburdening providers with information.
That's why one of the main things that is essential for digital health solutions is interoperability so that they can integrate with their EHR systems. Otherwise it's just some other document that you have to send through the portal. So that's a big trend right now, as is APIs, which are application programming interfaces.
People are building platforms that give you access to your various portals all in one place. And so it's been interesting to talk to those innovators and to help them realize, okay, what's meaningful from a patient perspective? What information do they really need?
And some other innovators that I'm talking to are trying to empower both patients and providers with a high-level summary of all your medical records to get your hundreds of pages and see—boop—this is what you need to know. For me, that's one of the most exciting, things on the horizon, because especially with people with chronic illnesses, that's so important.
Carrie Niederman: So that they would be looking through a document and be able to pull out some of those high level pieces. And I think that would be very valuable because you identify trends and other things, like this happens these days and what's happening on these particular days of the week, or that's why are you getting triggered. And maybe that could help level more normalized things.
So I share that excitement of that piece, and I feel like some of those home monitoring things—again, I’m less tech, and haven’t grown up with technology, so it's a little clunky for me. But I think that as long as they don't add to the triggering and how much brain activity they use, that it would be helpful for me.
But I think that as you said, taking a big chunk of information and being able to filter it down and and finding out—doing that word cloud kind of thing to get a sense of what’s popping up and why, that would help disseminate some information.
So, you're really helping empowering patients. And so I'm interested—what are those barriers within the digital world that you've identified that you're trying to help minimize?
Meredith Mangold: Like we've already talked about, we already have so many burdens on us to navigate the healthcare system.
I always say we have to be the CEO of our health, and it truly is a full-time job. For example, if you have an app that's meant to help you manage your chronic illness, but the design is really complicated, or there are too many features that don't apply to you, then it's really overwhelming, and it seems like just another task in your health management that you have to go through. And it's not actually helpful, so people don’t use it..
So you have to make sure that the design of the innovation meets people where they are in terms of their digital literacy and their health literacy. It needs to be in terms that patients can understand—and to have information written at a fourth to sixth grade level.
If you have a solution that is really technical, then it's just going to fly over people's heads. And there are also barriers about privacy and trust, especially in relation to data. Patients are nervous to get their data out there, unsure about their trust in the company.
Why is this in my best interest? Am I going to own my data or is it going to be sold? And so people feel really hesitant in that way too. Also, like I mentioned, in terms of the customization, was this created with me in mind, or is this something that just physicians or tech people think is helpful for me?
Bridging the Gap: Digital Health Innovators, Providers, & Patients
Carrie Niederman: So how do you, if you have these two worlds—the patients are at home, tech people are in their offices and clinicians are over here…How do you get those voices in the same room?
What have you found to be successful for that? Because that's so critical, but so hard.
Meredith Mangold: It’s so hard. And that's what I'm trying to do with my business is to get as many stakeholders in the same Zoom room as possible. I think of myself as a patient experience and engagement strategist.
So I connect with digital health companies and show them how to meaningfully engage patients in their innovation process. So obviously the ideal situation would be for patients to work with them from the very beginning of the innovation development process and then to be able to give guidance throughout as they iterate their product, making sure it's really meaningful for patients.
Right now I'm working with a startup company to help them create a pilot program to bring on what I have called patient pilot partners to really engage them and give us feedback on what their their journey is like.
That’s so we can truly understand what the main pain points are. If you could create one thing that could help you with that pain point, what would it look like? The reason I wanted to work with these innovators is because they really get it, that in order to create a successful product, they need to include patients from the very beginning.
And we are learning so many valuable things from these patients. And it's sad that I can always anticipate what their pain points have been throughout their experience, but it's very interesting to see how people want different kinds of tools. But there’s a lot of overlap.
So we're getting really meaningful information. I help create like these pilot programs, create internal patient advisory boards, external feedback panels; I help organize and facilitate patient co design workshops… Say an innovator wants to know how they should build their symptom tracking feature. I bring patients into the Zoom room and say, what is helpful for you? What isn't?
And then I also help innovators create more customized user satisfaction and feedback surveys, because a lot of times they're good at quantitative information, like NPS surveys where you rank X, Y, and Z. But it's really hard to get meaningful qualitative data. One of the things that I think is so important is to really engage with the patients and learn more beyond the, like six out of 10. It’s helpful to realize, how are you using this in your daily life? How helpful is it? What are some things you'd want to improve?
So my job is to be the bridge, the facilitator between patients and these innovators and to get them to talk together to innovators, and create something that's really meaningful. Therefore, patients will want to engage with it which drives user engagement and long term retention.
So ultimately it's helpful for everyone.
Carrie Niederman: Wow. That's a powerful bridge. And all I'm thinking about is when you started off this conversation about the fact that there's so much medical knowledge that is intertwined in this, and that having patients be able to learn how to articulate that—I feel like I’ve had, I don’t know if an advantage is the wrong word, but I was trained in the medical community.
So these are terms that are readily something that I can use.
Carrie Niederman: If you suddenly got sick overnight, you were studying Arabic and now you're this, you didn't have that breadth of medical terminology. You didn't take medical terminology. It was a crash course.
So part of it for a patient is this fear of not understanding the terminology and being able to get the explanations to a level that doesn't, if not demeaning, makes it practical in a language that they can really understand.
This ensures they’re not saying yes to something that’s not what they really want, but they don't really know what it is and they don't want to admit that they don't know. So they say yes, and then now they're doing something that's scary.
There's a lot of emotions involved, and a piece of it is that the simple formula that you're describing, Meredith, is very complicated. And I admire you even more because you bump into all of these barriers. One barrier being, do they understand the basic piece of technology. You have the medical world too, which is very complicated and separate, and you’re trying to bridge them.
Meredith Mangold: Yeah, several years ago, I was working with a startup that was creating a mobile app for inflammatory bowel disease patients, which I have IBD.
We were interacting a lot with the users through an AI kind of chat feature. And I was so surprised, that so many of them did not know what IBD was, what it was affecting in their body, and why they're taking these certain treatments.
That was why we created a resource hub so they could message in and ask, why am I taking this medication? And we could say, here's some medically verified information to explain what's going on in their bodies. And now they can then take that knowledge to advocate for themselves.
But we'd also provide insights from other patients. They could say, I’m suffering abdominal cramping today.
And, we could say, I'm so sorry you're experiencing that. I know how hard that must be. Other patients who have your diagnosis or taking this med experience the same thing. Do you want some a piece of information, an article, a blog from our patient ambassador, Amanda, who shares similar symptoms with you to see how she navigates this issue?
It's important to feel like people really responded to like peer information, because it's not just clinical. I know they're living it and how they can empower themselves through that. So education is really important, and I think tech is a great way to do that.
Carrie Niederman: That sounds marvelous because you're right, that peer to peer interaction. Even reviews on Amazon are meaningful for us, but with this, we can learn when did this happen to you, and how did you get through it?
Then it stops you from getting on the portal and sending another message to your physician which adds to a big compilation of messages that are not helpful and aren’t going to get you the kind of response more intimate or more practical timing wise that you need, boy, I wake up and this is what I'm feeling.
What do I do? And I think that's very helpful and wow I'm even more impressed Meredith with what you've done. And when you can do a medical book in Arabic, then I'll be like, okay, I'm done. I'm done.
Meredith Mangold: I don't know if I can do that right now. That's okay.
Carrie Niederman: [00:43:00] You're a woman of many talents and really grateful for any other things that you wanted to add at this point.
Meredith Mangold: I think the. ultimate kind of conclusion is even though tech is great and it's helping to, streamline administrative processes, it's helping to connect patients with like clinical trials it's helping health care organizations to help identify like bottlenecks to help improve their processes and patient flow.
We can't replace the human element. So like you were talking about wanting to message in and say, Hey, why is this happening? What we did with the IBD app is to always say, here's this information, but talk to your doctor. They know you best. And that human element is so important in healthcare because our health is everything.
It's if we don't have [00:44:00] health, we don't have anything. And I know it's really those physicians and those those other healthcare providers who really care that make all the difference. The past two years, I found an incredible pain management doctor and I'm able to see her virtually. And literally at the end of every call, I tear up and just say, you don't know how much you have changed my life and going from bed bound to, I went to a conference a couple of weeks ago.
And so I sent her pictures of me at the conference, all dressed up, send her an email pics or didn't happen. And Just to be able to connect with someone who really cares for you is so important. So tech is great, but we can never replace the human element, that empathy.
Carrie Niederman: Yeah, and so and kudos to you for giving that care provider that feedback so that then she knows really what she is helping with.
And that's will [00:45:00] allow help her to prevent her from burning out and prevent her from. That gives her that satisfaction at the end of the day, knowing, I've really made a difference in her life. You could thank her, but seeing you out in action and doing things that you weren't able to do before.
I think those are the things that you want. And that's why I know that's what I went into veterinary medicine for is to have my patients. Be better, whatever that definition is. So anyway, thank you very much for your time and for your talents and look forward to continuing this conversation again, and getting some updates on some of your specific work.
Meredith Mangold: same to you, Carrie, you're making such a difference in people's lives. So thank you for what you do. I see you and yeah, I would love to continue to support you.
