From Patient to Advocate—Transforming Healthcare Through Patient Insights

[00:00:08] This is HIT Like a Girl and this is Demiradova. My name is Molly Schreiber. Molly, let's start with a quick intro. Can you share a bit about your background and your role in healthcare? Yeah, well first and foremost, I'm a patient so I have had type 1 diabetes 35 years most of my life as well as diagnosed with rheumatoid arthritis as an adult. I grew up with my father having the type 1 diabetes too so I really don't know life without healthcare needing it.

[00:00:34] I became sort of a patient advocate accidentally like most people do just sharing my story. And then fast forward lots of years, I joined Savvy Cooperative which is a patient owned marketplace for patient insights and data. And so we work with patients across all conditions and across the globe. So I went from talking about my story to amplifying the story of others. Amazing. We're here at VIVE discussing what's coming with the new administration.

[00:01:02] From your perspective, what are the biggest policy shifts or industry changes on the horizon? One of the big things that has come out recently is research and sort of the cancellation for lack of a better word. Or maybe the deprioritization of it. And that's important for a lot of reasons. Clinical trials are incredibly important. They're important to me as a patient. The drugs I'm on for my rheumatoid arthritis don't exist without clinical trials.

[00:01:32] But there's also so many people that use a clinical trial really for their healthcare when they are needing a treatment or needing another option. They get care. I think a lot of people don't realize that a clinical trial isn't you just show up and get an injection and walk away. A lot of times you get care and you get wraparound services and you get access to treatments that you wouldn't normally have. And so right now we're sort of in an inflex where research is paused or canceled.

[00:02:01] And then there's folks, you know, that were in a trial that have a device in them or have no idea sort of what to do right now. And so I think that's sort of the thing that should be screaming and everyone should be talking about. And it's just something that's also important to me as a patient. Patients are often left out of decision making in healthcare. And I'm curious, what are some of the most common gaps you see between what patients need and when the industry is delivering?

[00:02:27] A lot of times I think the first sort of issue is that folks assume they know what a patient needs or what a patient's experience is like. They assume that because maybe they have researched a condition or read about it or investigated a drug for it that they truly understand the patient journey. They don't. Spoiler alert. But the other thing is sort of on the patient side, you know, physicians and their care team, that teamwork is often missing.

[00:02:56] They're being told, you know, here's the best thing to prescribe by a pharma rep or here, you know, in this lab value means this. This is what a patient gets. But they're often leaving out the patient's goals and what the patient's quality of life looks like. And so, yeah, I think that's really where the biggest gap is, is between, you know, what does a patient need and what coming directly from their mouth versus assuming. Savvy Co-op is all about bringing patient voices into healthcare innovation.

[00:03:23] Can you share an example of how patient insights have changed a product, a policy or a service for the better? Usually I can't, but I can for this one. So we actually, like I mentioned, we work across conditions and usually that is oncology, metabolic spaces, things like that. But we actually did a project for Amazon where we recruited patients who either have a stutter, a stammer, a vocal impairment that maybe is from cancer treatment on the vocal cords, for example.

[00:03:50] And we paired them with Amazon to make their Alexa devices work better for people with vocal issues. And so our work at Savvy was finding the patients, verifying that they are who they say they are and they have the condition they say they have. And then we consent them. And they worked with Amazon to develop a patch that's in actually everyone's Alexa device. You don't have to raise your hand and say that you have an issue or you need help. It's automatically in there. And patients made that happen.

[00:04:19] And so they were paid for their time, of course. But the real value is that hopefully, you know, more people can use the technology too as a result. With more digital health tools emerging, do you think patient experience is actually improving or are we just adding more noise and complexity? Both. So there has been a shift. I've been at Savvy for four years now and worked in healthcare before that. And four years ago, we were convincing people that they needed to talk to patients.

[00:04:48] There's a little more awareness that that's important. It's not always a checkbox. I talk to a patient, check this off. But there are still plenty of folks and even at conferences like Five Health, you know, all over where there are startups that have an idea. They think a patient needs this, but they've never asked one. They've never even consulted with one.

[00:05:10] And we have sort of an offering that we do at the Health Vegas and Europe conferences called the Ask Patients Lounge where folks very much like startups or anyone can literally sit down and say, hey, I'm working on this. Do you want this? Because you can save yourself a ton of time, money and effort if you just, it's not rocket science, ask your end user what they'd like. So yes, I think companies, you know, are getting better, but they can always improve. How's that?

[00:05:36] Many health innovations don't always consider accessibility, chronic conditions or diverse patient experiences. What are some blind spots you see in digital health today? You know, when people use diversity, for example, and they say they want a diverse sample of patients to speak with. Diversity means a lot of things when it comes to speaking with patients. It's not just, you know, in terms of race or ethnicity, age, demographics, things like that. It's also access.

[00:06:05] We have folks that do our projects from the library computer with internet because they don't have internet at home. Like, you know, for example, Wi-Fi and internet is so everywhere that we just assume everyone has access. But there's two things, you know, they need a finances to have the devices and the access to the actual internet. But then they also need to live somewhere which comes with access where they can get that. And that's not the case everywhere.

[00:06:34] And so I think we're missing a lot of those, you know, patients that are at home right now, see pharmaceutical commercials for sure, but have no idea that their voice could shape that or have any impact on that. And so it's important to me, savvy, but of course me as a patient that I'm bringing someone to a project that has no idea their voice has value. That has, they're sitting at home and have no clue that their story is just as impactful as the one they're seeing in a TV commercial.

[00:07:02] And so I'm very lucky that I get to bring those stories forward. But yeah, I think we make a lot of assumptions. I think that's the key word. With access, I think a big thing to talk about is interoperability. And so I'm curious, have you seen real improvements or do patients still struggle to get control over their own information? I think it's twofold. I think the access has definitely increased. In fact, I think it increased so quickly that sometimes it can be a bit of a disservice.

[00:07:30] Sometimes you get your results before the doctor and you are Googling and figuring out what something is and that's an unneeded stressor. But then the other piece is I don't think patients fully understand where their data is going. I don't think they realize when they check those quick boxes and they give away things when they sign up with their email address, that you're sharing really valuable information. You know, your health data has value.

[00:07:58] And it's also personal and private and you should be controlling where it goes. And so I think that with access, we've increased that quickly. But I don't know that we have really hit the mark on a serving the patient with the data and the results as they should be served. But also letting patients know where their data is ending up. I don't think any of us really know, honestly. I'm curious if we double click on the data piece.

[00:08:25] Is it valuable in isolation as an individual or does data become valuable in aggregate? And let's unpack what we mean when we say value. I'm curious. Yeah, I think it's both. So I think each person's data tells a story. For example, you know, my type 1 diabetes data is in reference to also living with rheumatoid arthritis. And so that's very different in terms of how my body reacts to something, for example.

[00:08:51] But over time, the more data we have from people, you know, with a similar condition or maybe it's using a certain therapeutic, that holds value in giving us data on what works, what doesn't, why it works, maybe why it doesn't. Data, is it more valuable in isolation and aggregate? And then what do we actually mean when we say value? And so when we talk about the value of patient data, it's on two sides.

[00:09:16] So companies are willing to pay for and listen to data and grab data however they can. They don't always know if they're getting good data. That's a big thing right there. So the value, it could be good or bad. But then on the patient side, there's value financially in your data. And I think patients need to realize that that's part of the story. That's the same thing, you know, for example, doing an interview. Say they do a savvy or another company. You're paid for your time. You should be paid for your time.

[00:09:45] And giving up your data is the same thing as you sharing your story vocally. You're giving up your story in a different way. And that you should be paid for that. You should be compensated. You should know where your data is going. And it can be hard to advocate for that. But the more we all do it, the easier it will be for everybody. One space that when I think about data that always comes to mind is women's health

[00:10:12] and the lack of data and information we have. So should we be encouraging women to share their data? So I have a daughter in college. And I can tell you that we have sort of talked about this because there are some great apps out there. There are some wonderful tools I use for myself. That's just she. And I'm probably not even aware of all the ones that are out there. But we've also heard that in some states or some areas,

[00:10:38] depending on where you live or your, you know, the policies within your state, that they can access that data for things that aren't okay, in my opinion. And I think we need to be cautious. I think we really need to vet where we're sharing our information and also realize that just because you love the app and you love the tool and you're getting a lot of value, it might not be worth it in the long run, unfortunately.

[00:11:05] So I think women in particular need to really do their due diligence in not only looking into what they're using their data with, but what they're also suggesting or recommending to others to use it for. If you could change one thing about how the health industry listens to and collaborates with patients, what would it be? Do it more. Do it often. Don't, you know, assume just one check-in with a patient is good enough. The earlier you can come in, the better when you just have an idea float across your head.

[00:11:35] But I know that's not how big business works. But don't use patients as a checkmark. Don't present them something that you have made, you have product, you know, you have a commercial for and just kind of say, hey, do you love it? And then you want to be able to walk away and say, well, patients love this. We asked them. But did you ask them? So we really, I would love for people to do a bit of a better job of really digging in with patients, finding out what they want, what they need before you create something.

[00:12:05] And then if you have created something, because this is the real world, be open to their suggestions, be open to changing, because at the end of the day, you're going to have something they want. They purchase, they use their insurance, they ask their doctor for. It's actually good business for you to work with your end user. But unfortunately, it's not as common as you would think. So if you could send one message to policymakers about the future of health care, what would it be? Really remember that, you know, health care doesn't just affect the patients.

[00:12:34] Patients are often referred to sort of as this like other group, this group that's impacted by, you know, maybe it's a disease that comes out, the pandemic that showed a lot of it. It was like, oh, it's just the sick people. It's just the old people. Well, that's your mom, that's your sister. And unfortunately, that's probably going to be you at some point. The chances of having a good condition are unfortunately pretty good. And so I would ask, you know, everyone to remember that the patient has just as much value as you do.

[00:13:03] They're people, we're people. I'm a person too. I'm also a mom and I also work and I'm a wife, but I'm also a patient, you know, and remembering that and then letting that sort of drive more trials, more safe research, more access. Let that be sort of your North stars that you want to do what you would do for yourself or your mom or whoever is most important to you and treat the rest of the community that way. Where can our audience find and follow your work? Yep. So we are Savvy Cooperative.

[00:13:33] So Savvy.coop, C-O-O-P. And if you are a patient or a caregiver, caregiver stories are equally as important. We know that. You can sign up to share your voice with us. And then if you're a company and you don't know where to start, feel free to email us or reach out. And all we want to do is help folks really work better with patients. Thank you so much. Yeah. Thank you for having me. Thanks for listening.

[00:13:59] You can learn more about us or this guest by going to our website or visiting us on any of the socials with the handle hitlikeagirlpod. Thanks again. See you soon. Again, thank you so much for listening to the Hit Like a Girl podcast. I am truly grateful for you and I'm wondering if you could do me a quick favor. Would you be willing to follow or subscribe to this podcast or maybe leave us a rating or review? Or if you're feeling extra generous, would you share this episode on your Instagram stories or with a friend?

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