People newly diagnosed and living with chronic conditions increasingly turn to technology, the internet and social media seeking information and education, to share clinical information and the latest research, to receive and provide support, and to share solutions and resources. In the spirit of “meeting people where they are,” clinicians are following and joining patients in these social spaces, learning a lot -- and together -- are improving health.
In this episode we hear how Nurse Practitioner Michelle Litchman, PhD, FNP-BC, FAANP, FADCES, FAAN practices and innovates at the intersection of diabetes, digital health, and disparities. Searching digital spaces, online resources and communities she discovers the specific needs and pain points that patients and families are experiencing. Her work to better assess and address the many dimensions of access and accessibility led to an awareness and understanding of why people with diabetes are foregoing basic needs and taking part in "life exchanges'' of trading of insulin and medical supplies just to stay healthy, and to the subsequent passage of legislation offering an important lifeline to those who depend on insulin to survive. In her research and innovation, she shares the value of collaborating with citizen scientists so the patients’ story and experience are reflected in the research, policies, and solutions.
Have questions for the SEE YOU NOW team? Feedback? Future episode ideas? Contact us at firstname.lastname@example.org.
- The Fakebetes Challenge
- Social Media and Diabetes: Can Facebook and Skype Improve Glucose Control in Patients With Type 1 Diabetes on Pump Therapy? One-Year Experience
- Why Diabetes Patients Are Getting Insulin From Facebook
- “Everyone Included” Social Media Research Challenge
- Diabetes Program Accessibility for People Who Are Deaf
- U of U Health Expert Aids Passage of Diabetes Legislation
- Why #WeAreNotWaiting—Motivations and Self-Reported Outcomes Among Users of Open-source Automated Insulin Delivery Systems: Multinational Survey
Guest: [00:00:00] We need to understand the pain points that individuals living with a condition are experiencing. You can't just prescribe a technology and expect someone to automatically know how to use it. You have to be able to help walk them through that. We need to really pay attention to interoperability. It should be about what patients feel that they need to be successful.
[00:00:22] SEE YOU NOW is a podcast highlighting the innovative and human centered solutions that nurses are coming up with to solve for today's most challenging health care problems. Created in collaboration with Johnson and Johnson and the American Nurses Association and hosted by nurse economist and health tech specialist Shana Butler.
Host [00:00:41] Welcome to SEE YOU NOW. I'm Shawna Butler. The internet has transformed many spheres of society, and health care is among the most transformed the internet. Digital technologies and data are profound drivers in how health care is increasingly mobile, digital, remote and distributed. There's a lot to learn and to keep up with, and our traditional delivery of health care services is having to rapidly adapt with much of that rapid pace. Inspired by a global pandemic and exponential technologies, but also by impatient patients hashtag patients who are not waiting. People newly diagnosed and living with chronic conditions use the internet and social media to seek information and education to meet and interact with a community of people with similar diagnoses to share clinical information and the latest research to provide and receive support to share solutions and resources. And in the spirit of meeting people where they are, clinicians are following and joining patients in these social spaces and together learning a lot. They're collaborating, co-creating, innovating and coming to appreciate how valuable the data, the information's and friendships and stories discovered in online communities can be for research, policy, advocacy and practice. In this episode, we meet one health tech innovator who is searching digital spaces, online resources in communities to discover the specific needs and pain points that patients and families are experiencing. We find out how tech enabled care can actually lower the stress of
tHost [00:02:32] living with chronic conditions. We discover what's on offer when you go online in search of care and peers and understanding of living with a chronic condition.
Host [00:02:41] We learned the value of collaborating with citizen scientists,
Host [00:02:45] so the patient's story and experience is reflected and amplified in the research, policy and solutions. And in a vivid description, we get the many dimensions of access and accessibility.
Guest: [00:03:07] Hi, my name is Michelle Litchman. I'm an assistant professor at the University of Utah College of Nursing. I have an adjunct appointment in internal medicine, where I'm a nurse practitioner at the Utah Diabetes and Endocrinology Center. And within that center, I am the medical director of a program called the Intensive Diabetes Education and Support Program. My work is focused a lot on research and what I call clinical reality. I want to make sure that the research is focused on things that are really happening in the real world through that. Some of the things that I work on are delivering diabetes education and support programing to individuals with diabetes, typically adults, and we try to go about this in unique ways. Standard being that people come for shorter classes over several weeks. We see dropout in those types of interventions. And so what we've done is we boot camp style it, so they're getting it all in one day. And we've also created it to be so that there's a group environment. So people are learning from us, they're learning from each other. We also encourage them to bring a care partner, a family or a friend. The not only are they getting education, but someone who supports them is also getting training on how to best support them in their diabetes. And with the pandemic, we move to a telehealth platform and we're seeing a lot of interest in this. Given that our program is longer, it's not a typical one or even to our program because it's longer. People have the comfort of being in their own homes where they can walk around during break. They can sit in a really comfortable chair opposed to a conference room chair. So we're seeing a lot of success with this telehealth platform and the delivery of extended content through this platform.
Host [00:04:57] When someone is newly diagnosed with diabetes. It's a life changing diagnosis. How do you explain that? And how do people react?
Guest [00:05:07] I think it's really important to make sure people have a support team around them. Diabetes is hard and having more support can be really, really beneficial. A lot of times I'll ask people if they know other people with diabetes, if they have other people that they can talk to. My dissertation particularly focused on online peer support communities and how people are using them for diabetes self-management. Often I'll refer people to specific diabetes online communities so they can get specific emotional, informational support that they might need that they can't get from even me or other health care providers. I think we have to as a as a health care provider system, understand that we cannot be everything that patients need and peer support, which is technology enabled. They can get it 24-7. They can actually scroll through older feeds and feel connected to somebody and not feel so isolated. And I think that's really important in a chronic condition like diabetes.
Host [00:06:09] How did working at the intersection of diabetes and digital health and increasingly disparities? How did that work? Find you?
Guest [00:06:16] Well, diabetes found me because interestingly enough, I was taking a ceramics oil throwing class while I was a nurse practitioner school. And in that class, there was an endocrinologist, his wife, who was a diabetes nurse researcher and also a endocrinology nurse practitioner. And I shared with them my concerns while I was going through a nurse practitioner school about really wanting to be able to do a good job in diabetes care. And they invited me to train in their center, and I spent eight months there and loved every minute of it, and I knew that I wanted to do diabetes care. I loved the idea of being a part of someone's life and having them be a part of my life and kind of in it together. I kind of wanted to be in it for the long haul. And so that's how I fell into diabetes as far as digital health. There are just so many different tools that are available in diabetes spaces, insulin pumps, continuous glucose monitors, smart pens, varying degrees of technology within glucometer and apps. I mean, there's just so much technology. And so I I fell into that because it was part of my job and I needed to be up to date with everything that patients needed to be successful. And then as we think about disparities, I am mixed race COTA, which means child of a deaf adult. My mom is an immigrant from Vietnam. I have six deaf family members, including my mom. And so I see disparities through a different lens than some individuals might. I see it from what my mom has had to go through as an immigrant, what my mom and other family members have had to go through as deaf individuals and their access to education and health information. And then, of course, we know that there are lots of disparities in diabetes. We know that diabetes is touching racial and ethnic communities at a higher rate than white communities. And so with all of that combined, I just felt that it was really important to move my work into this space. And I've done that in a couple of ways. So the first is this diabetes education management program that I direct. I've partnered with the University of Colorado and their High Plains research network, where they're doing this great research in rural communities. And so we're taking the intervention that we developed here at the University of Utah, and we've adapted it for rural communities. And now we're in the process of delivering this to rural Colorado. And we're really excited about it. We did our first one in Spanish and we'll do our next one in English, and we're getting really great feedback and we're very thrilled about it. The next wave that I'm addressing disparities is again taking this diabetes education intervention that we know is working here at an academic medical center, and we are now going to apply it to deaf and hard of hearing populations. We really want to make sure that individuals who are deaf or hard of hearing have access to high quality diabetes self-management education. And with that, we're partnering with Gallaudet University. Gallaudet is the world's deaf university. We're going to engage deaf individuals with diabetes and their care partners. And when you think about deaf individuals, they most often marry somebody who is deaf, that their parents, their siblings and their children are often hearing. And so we're really taking an interesting approach to this intervention because we need to make it accessible and several levels. First, we need to make it accessible in American sign language. We also need to have closed captioning and then we also need to have an audio component as well. And so we're really providing. The intervention in three different modes, because we really need to make sure that everybody feels like they're getting education in a way that they best learn.
Host [00:10:17] You have an enormous amount of experience, lived experience, a research, focus your practice, how are you innovating to make care more accessible for people in the hard of hearing and in the deaf community? And actually, how big is that community?
Guest1 [00:10:35] There are 11 million people in the United States that are deaf or hard of hearing. And of those, 500000 are primarily using American sign language. American sign language is typically the primary language for someone who is deaf where they've grown up deaf. One of the things that is a big misconception is that individuals who are deaf automatically know English, and that's not true. So there are some deaf individuals who use sign language as their primary language. And so that's really important for developing materials and access. Sometimes what we try to rely on is if we can't communicate verbally is that will provide written materials. But that might not work for someone who is deaf. So it would be the equivalent of handing someone who speaks Spanish a hand out in English. So some deaf people are bilingual. They'll know ASL and they'll know English. But in those instances where someone only knows a sign language, we need to make sure that we're providing information in the same language. And the intervention that we're going to be delivering will be in sign language. It will provide closed captioning so people can read English and then it will be verbally in English as well, or any care partners that might be attending or anybody who's using hearing aids that can still hear partially that can benefit from the English as well. So this intervention will be delivered in three different ways American sign language, closed captioning and English.
Host [00:12:08] What about those folks who speak Spanish or Vietnamese or Mandarin or Pashtu, and they also have diabetes or a chronic condition or are not hearing how we going to use technology and your innovations to meet their needs?
Guest [00:12:24] That's a great question. So my mom is an immigrant from Vietnam and had a Vietnamese ham sandwich before she came here, but still uses some of those signs today. So individuals who come from different countries likely use a sign language from their country. So there is British sign language. There's Auslan, which is Australian sign language. There's sign language that is very specific to Vietnam. And so when you come to the United States and we use our American sign language interpreters, it's not necessarily in the language that someone who's coming from another country might understand. And this is where we can benefit from certified deaf interpreters. Certified deaf interpreters take the translation from the hearing interpreter who's taking the verbal information, translating it into American sign language. Then that certified deaf interpreter takes that information and then translates it into a more home sign language or a international sign language so that somebody can better understand what's happening. And so we will be providing two layers of interpretation as needed based on individual needs so that someone who comes from another country can understand the diabetes and education that trying to provide.
Host [00:13:41] The complexities of all of this
Guest [00:13:43] are hopefully it made sense. No, no, no.
Host [00:13:46] It does make sense, but it's not until you break down every single step that you start to appreciate the complexities. Oh, there's just so much that's I guess, truthfully lost in translation. And you're really bringing to light the challenge that's there. But then more importantly, you're delivering solutions and innovations and embracing all manner of technology and using it in different ways. And you refer to it as we're adding a little bit of technology or prescribing technology. And I love that term when you think about prescribing technology or prescribing an app. How would you from the standpoint of encouraging the vast array of health care providers to embrace this and to think about prescribing or adding technology?
Guest [00:14:34] I think the first thing to do is to understand if a patient will benefit from it and if they want to use that. And once you've overcome those two items really trying to understand, OK, what is the best technology for that person? I think that it's really important to prescribe social support through online communities. I am very well versed in many of the diabetes online communities because I pay attention to them, I engage with them. And so I know where some communities might better serve some patients than others. Another thing is to really understand the different technologies that people want to use. So for some, it is apps and there are so many diabetes apps that exist. Some individuals love data and they want to input everything, and there are some that want something that will capture something maybe like the pedometer from their iPhone and in that sync up with an app. One of the things that's not well understood is how people build this into their visit, though, so the average health care provider is about 15 minutes to see somebody. There's a couple of thoughts about that. So one is you can train your support staff to really help with that. I know that some individuals might also offer classes to get people working towards a specific technology. We have something here at the University of Utah that is almost like a genius bar that you would see at an Apple store where you go in and you talk about the apps that you're thinking about using or that your health care provider has prescribed that you use and you sit down with a librarian who can help walk you through that app. You can't just prescribe a technology and expect someone to automatically know how to use it. You have to be able to help walk them through that.
Host [00:16:15] There are so many granular details of living with diabetes that get glossed over. There's a lot more that I don't think that we're capturing. You created this fake Beattie's challenge. Can you see more about how it helps in us understanding what it is to be living with a chronic condition or an accessibility issue?
Guest [00:16:38] Sure. So Fake Betis is a high fidelity simulation of living with diabetes. We know that we can't create all of the scenarios, but we did the best we could. And so we took health care providers, medical assistance nurses, dieticians, different types of health care providers who were connected with a person living with diabetes, and the health care provider was supposed to go through the different motions that someone with diabetes would. So that includes checking their glucose, counting carbohydrates. But we know that living with diabetes is so much more than that. And so we had that person living with diabetes connect through text with this health care provider and randomly throw different blood sugars out that the person had to really critically think about so that they got how mentally taxing diabetes can be and having to troubleshoot different glucose levels at different points of the day and in some cases, really having to pause. So if somebody had low blood sugar while they were in the middle of trying to pick up their child from day care, let's say then they were really supposed to pause just like somebody with diabetes would. When the healthcare providers went through those motions, they started to better understand and gain empathy for what someone with diabetes might be going through. And when you can start with this empathetic place, you can at least try to better understand someone's situation. I think too often we say it takes just a few seconds to check a glucose, just eat well, exercise, and those types of approaches aren't really helpful. Really understanding how and why someone is struggling can be so meaningful. One of the things that is important for health care providers and also technology innovators to understand is we need to understand the pain points that individuals living with a condition are experiencing. One of the questions I always like to ask is Tell me the hardest part of having diabetes. Let's start there, because then that could inform the rest of the plan in how you approach that person.
Host [00:18:45] OK, and what kind of answers do you hear?
Guest [00:18:49] So sometimes I'll hear that I don't like to take insulin. Sometimes I'll hear. I don't want to check my blood sugar. That's the hardest part. Sometimes I'll hear. I don't want to have to deal with other people asking me questions and making me feel bad about having diabetes. And so those three different scenarios require three different approaches. Someone who may be struggling with checking their glucose, they may benefit from a tool like continuous glucose monitoring or someone who is having a hard time taking insulin. They may benefit from a different sized needle. They may benefit from a different type of insulin. They may benefit from an insulin pump and the person who is experiencing stigmatizing comments from others. They may benefit from being in a community, perhaps an online peer support community where they can feel connected to other people who are living with diabetes just like them. And so again, I think asking that simple question can really inform how you approach somebody
Host [00:19:53] in the history of diabetes. My goodness, this has been an area that has been filled with innovation. Have you got some sense of a timeline or a history of innovation around diabetes?
Guest [00:20:06] Sure. So I think that the innovation of the development of insulin, which is critical for individuals with type one diabetes and many people with type two diabetes. One of the other great innovations was being able to check your glucose. So we know that in history, tasting urine was one part of how someone might know that a glucose level was in a elevated range. So having dipstick urine testing for glucose levels was a really big transition. And then when it transitioned to capillary blood testing with the glucometer, that was another great invention. In the last decade or two, most of the innovations have really focused on the delivery of insulin. We can think about insulin pens, which have now transitioned to smart pens. We can also think about insulin pumps. And then we think about how people are checking their glucose. And we have now continuous glucose monitoring systems that are checking glucose on an ongoing basis and providing predictive arrows so that people can see which direction their glucose is moving and the combination of those two vices together. So the insulin pump with the continuous glucose monitoring and the algorithms between them, where the insulin pump can stop or decrease or slightly increase the dose, that is a really important innovation that I think a lot of individuals are now benefiting from. I think about how much time and effort someone would have to put into a glucose that's now dropping or. A glucose that's rising really quickly. There's not only what do I do immediately to try and solve that issue, but also people physically and emotionally don't feel well when their glucose is going up and down. So these technologies are really helping to support that. However, people still have challenges. These devices can be very expensive, and if you think about someone who needs insulin, also uses a continuous glucose monitor, also uses an insulin pump, also needs to check their glucose with a glucometer every now and again to make sure that their CGM is accurate. All of these prescriptions add up and can be so expensive for individuals, and it's impacting not only the individual diabetes, but also their families as you think about how finances are managed within a family. And so even though we do have all of these great technologies, they're not accessible to everybody just due to cost.
Host [00:22:33] Increasingly, the conversation overlaps between technology and accessibility and affordability, and in some ways, the technology does make it more accessible and make it more affordable in other ways. Just as you're describing, that technology makes it less accessible and less affordable. You have been doing some interesting, I would say, probably groundbreaking work in understanding online communities and peer health and remote monitoring and health apps and device hacking and using predictive algorithms for dosing. How are you characterizing tech enabled care and management?
Guest [00:23:15] Some of the work that I've done has really explored what people are doing when they can't afford insulin or diabetes medications and supplies, and social media is a great place to understand the chatter or the word on the street as far as what people need, want and are doing. I started to see chatter about how if somebody posted that they couldn't afford insulin, some people were responding, well, I have an extra bill that I can give you. You want me to mail it to you or do you want to come pick it up if they lived locally? Other times, we would see people even offering to send a little bit of money through a cash app. And so what we started to see is this. Crowd sourcing of support to be able to afford medications and supplies, and around the same time, I had a patient experience where I was working as a nurse practitioner at the clinic and a patient came to me and said that they had gone on an online classified ad and purchased a garbage bag full of diabetes supplies. And they had met someone in a gas station parking lot to retrieve them and wondered what my thoughts were. And so, you know, I saw this chatter. I'm now experiencing this as a clinician. Having patients ask me, Is this OK? I had another experience where a patient had. Received insulin from a neighbor who had passed away, and they were taking a long acting insulin but had received a rapid acting insulin and wondered if it was OK to use. I was starting to see this trend that there was this trading or donation receiving essentially diabetes medications and supplies through exchange and what individuals with diabetes call it is a life exchange. This is a life exchange. We need this to survive. And so what we did is we created a survey and really tried to explore how many people are experiencing this. Could they tell us why they're experiencing this? And what we found is that there were very few people who didn't have insurance that were going through this. And so even if you have insurance, it doesn't preclude you from needing to ask for support to be able to access the medications and supplies that you need. Another thing that we saw is that people were experiencing what we call a death or death dilemma. Do they spend all of this money that they may not have to be able to purchase insulin or other medications or supplies that they need? Or do they risk detrimental events, hospitalization, diabetic ketoacidosis, perhaps even death by not accessing what they need? But people were making these decisions. Do I ration insulin? Do I not fill the prescription now because I need to pay my rent? People were struggling with these different decisions that they needed to make. This life exchange allowed people to continue getting what they needed without having to go into debt. So it's a really interesting ethical dilemma that I think that health care providers are now experiencing where they're having individuals say I've accessed this medication or this supply, not through my pharmacy or my durable medical equipment company, but through another person. And is it OK to take and I can't afford it any other way. And so what do I do? And in a lot of cases, we can support some individuals in getting medications through patient assistance programs, but they don't work for everybody and they don't work all the time.
Host [00:27:03] I know in your research one of the things that it's really helped surface is the nature of the problem, the scope of the problem, how the problem occurs, and you have been instrumental in helping get some legislation passed. How do all of those things combine in crafting legislation that addresses this as a systemic issue?
Guest [00:27:27] I think that legislators really appreciate not only the data, but the storytelling that goes with the data. So if you as a researcher can collect data, that's really important related to a specific topic. So in this case, it was really how many people are engaging in these underground exchanges to be able to access diabetes medications and supplies. And then I had the stories as me, as a clinician working with patients, working through some of the questions that they had in the situations that they were in. And when you can bring that to legislators, that's really important. And the legislation that we passed it was HB two or seven, which really increased insulin access in a couple of ways. The first is that it capped the cost of insulin, a vial at $30. The second thing it did was it actually increased pharmacist scope of practice so that when someone came on, maybe a Friday at seven p.m., their clinic was closed, but they didn't have any more refills to get the next dose of insulin that the pharmacist could actually put in an emergency refill for that person for that same insulin. And so that allowed it so that people wouldn't have to go to urgent care or the emergency room to try and get insulin on a weekend and really had improved access in a couple of different ways, not just the costs, but also how quickly can you get what you need so that you can avoid an emergency room visit, which could potentially lead to a hospitalization? I want to make sure that people understand that I didn't do this alone, though I worked hand-in-hand with tireless patient advocates from different aspects of the system. So there were patients, there were parents, caregivers and also me. As a health care provider, we came together to really push forward some of this legislation.
Host [00:29:15] The citizen science movement, this is an area where we need to have a lot of people and a lot of data rapidly iterating, you know, trying out different things, and it is interesting to see how we work together, how we discover together and we get better when our innovation and our research includes patients. Michel, how are you bringing this to life?
Guest [00:29:39] I've taken the opportunity to work with citizen scientists. These are individuals who are very interested in research, changing how we deliver health care and want to contribute. And really, they are part of the research team. They are looking at how we're analyzing data and in some cases, analyzing data alongside us. They also help collect data and then we interpret it together. And when we look at this data interpretation, we're not looking at it just as a lens of a health care provider or just a researcher, but also that patient voice in making sure that the story is being told fully. I've published with several citizen scientists and we make sure that that community's voice is heard as best as possible.
Host [00:30:26] How do you recommend navigating that, managing the ethical considerations here?
Guest [00:30:32] I think we first start with making sure that the patient voice is at the table, but also that we're hearing the voice. We can't just invite them and then not listen. Also, one voice does not represent all voices, and so making sure that you have a diversity of voices at the table. And when I say the table, this is in the rooms where we're developing the technology, where we're working on how someone might apply the technology, also what it looks like, what it feels like and then how they interact with the device, not just in their daily lives, but also when they meet with a health care provider as well. The other thing I think is important is making sure that we're not taking advantage of individuals and their time, so we need to pay individuals for their time and their expertize. As experts living with diabetes, we need to make sure that they're also getting credit for the contribution that they're making. So adding individuals on publications but also having them present with you is really important and it shows them that you are really interested in their voice and that you want to share the platform with them.
Host [00:31:41] OK, you're making me feel terrible that we didn't invite the patient in to our conversation. Note to self, what are you learning from patients and families and online communities that maybe are not learning in your in-person visits in clinics?
Guest [00:32:00] I think one of the things that you can learn from online communities is that you get a lot of different perspectives when you see one person or even a panel of patients for a day. You only get to hear those many voices. But when you look online, you can see voices not just from your local area, but from all over the country, and you hear those voices from different perspectives. So oftentimes I don't get to see a child parent concerns because I work in adult endocrinology and so I can get a better understanding of where the pain points might be for a parent or maybe a teenager that lives with diabetes and also different insurances and different living situations can really impact how diabetes is managed as well. One of the things that we're seeing is as people transition to Medicare, people are experiencing differences in how they access medication supplies, even their health care provider. Another aspect is emerging adulthood because they're leaving their home, perhaps for the first time, they're going to college, they're taking on new jobs. Individuals might be frustrated with their peers at college because they don't understand diabetes, or they might be having challenges with professors or maybe even an employer in being able to take the breaks that they need to check their glucose or be able to treat hypoglycemia. And so those are things that you can see on a broader scale than what you can see just one on one with patients in a focus group, a person with diabetes told me. I don't go looking for a diabetes when I go on social media. Diabetes is not my hobby. That really struck me that someone who isn't seeking diabetes online communities may not know, number one, that they exist. And number two, that they can provide a sense of connection and that they don't have to be like going to a clinical visit. So one of the things that we're doing is we're working with a citizen scientist who is helping us develop this intervention where we have this warm handoff into the diabetes online community through connectors. Sometimes these are called patient navigators in the hospital, but really, we're calling them peer connectors within our intervention because they're really connecting people to quality groups that are going to be meaningful to those individuals because there's lots of different groups online. There are diabetes groups that are focused on people who are trying to get pregnant. There are groups focused on individuals who are using certain types of technology. And so we're really trying to make sure that those individuals get connected to the right group so that they can thrive with whatever goals they have for themselves related to diabetes.
Host [00:34:42] In this moment in time, online communities, they have grown in prominence and influence as to where people are getting their health information and increasingly where they're getting their mis and disinformation. What are you learning that an online community can do to improve health? And then also, what are you learning about how it's harming people's health? And how do you take those learnings and help us with our public health messaging so that it's more effective that we can get on top of it? I mean, we're just seeing so much right now during the COVID pandemic, and what I worry about is that it confuses people. It stresses people out. And so they either tune it out or they're more likely to listen to somebody that they know and have a relationship with. That might not be a person who actually has accurate information.
Guest [00:35:35] Within diabetes, online communities, the research that we have done show that misinformation is actually pretty low, and when we do see it, it typically gets what we call policed out. So that means other people in the community talk about how that may not be true or it may not be true for everybody. A lot of times people are very educated and they'll pull in citations to support what they're talking about. This is different than maybe doing a search in a search engine like Google, where you might be getting advertisements from a bunch of individuals. And so I think that being a part of a community that is really trying to keep their community clean with good information, that's important. But also I like looking at the data that exists in different ways. When you look at social media data, you can understand what's happening in the real world. One of the things that I did recently was a YouTube analysis of diabetes education videos in sign language. And when we looked at these videos, we saw that there were 34 videos that were in sign language and 20 of them were in American sign language, like I mentioned before. There's other sign languages that exist globally, but I think one of the issues that I was surprised to see is that of those 20 videos, 11 of them were assignments for ASL students focused on some sort of interpretation about diabetes. And so if you think about over half of these videos are developed by students in a sign language class and they're not certified interpreters, they're not health care providers. And so is the information accurate, but that's what someone who is deaf might have access to. And so with that information, it's armed me to talk to the American Diabetes Association and the Association of Diabetes Care and Education Specialists and say, Hey, we need to be creating video content on YouTube or individuals who are deaf in in sign language so that they have accurate information from a professional organization that is trusted and so that they are getting the best education possible. And so right now, I'm in talks with both of them. So I think it's important to not only see what's in the real world, but really make action from that. So who do you need to talk to you to be able to advance the next thing that's needed? COVID is really challenging with regards to disinformation, because not only are we seeing community groups providing some disinformation, but also especially early in the pandemic, we were getting misinformation from leaders. And so I think that this is really important for leaders to step up and make sure that they're providing accurate information. I think one of the things that's also happening is information is changing as as we move forward in the pandemic. And so making sure that there's a hub of accurate information that can be shared and new materials, but also making sure that those materials don't just stay within a small group of individuals. So this might mean translating these documents in two different languages. It could also mean that we need to hire community health workers or trusted individuals within different communities to really be delivering those messages. And then also, not everybody's online. And so for some communities, we might need to get back to the radio, do radio ads. We might need to be doing television plugs and knowing that not everybody watches the news also. So how can we plug in maybe different pieces on regular television programing that somebody might be engaging in? We need to be looking at lots of media sources, not just online sources.
Host [00:39:10] You have this really wonderful intersection of citizen science and social media. And as you mentioned, you're using it to collect data, to recruit people, to be research participants, discovering how they're managing their lives or their families or their situations. There was a team that you were a part of that competed in social media research challenge, looking at hashtags. And one of the things that I love about that was the team that it included patients and technologists and practitioners and researchers. Can you describe what that challenge was and really, what did you learn?
Guest [00:39:50] This was the Stanford Med X simpler challenge, and we had to submit a proposal focused on a big idea that we had that we could solve by examining hashtags. And we as a team selected, we are not waiting and also open apps. We are not waiting. Is individuals living with diabetes saying we're not waiting for someone to create what we need. We're going to create it ourselves. And Open Apps stands for open artificial pancreas system. And with that prior to us having. Automated insulin devices. We had people hacking devices and people still do, but they were hacking their continuous glucose monitoring system and their insulin pump, creating algorithms and really creating the the beginnings of an artificial pancreas system. What was really interesting about that challenge is that this was not something that was FDA approved, but there are a lot of people engaging in this activity. And so the challenge was to use these hashtags specifically looking at Twitter, really trying to capture what was going on. And so we did a couple of things. The first is we tried to understand who are the personas or the types of people that were using these hashtags and what were they trying to do? And the second thing that we did is we tried to understand what our users, so people who are actually using these devices saying about how this open apps system works for them, what is their experience? And so with the persona is what we found is that there were a lot of leaders within the open apps movement, and those leaders were often those that had built the systems. And then we had also health care providers who believed that these systems were beneficial. And so they were also spreading the message. And then finally, we had individuals often living with diabetes or caregivers living with diabetes who just thought this was amazing and we're really helping to widen the net so that more people would know about what was happening. And then when you look at what were people experiencing related to using these devices, a lot of people shared that their A1C levels had never been better. They even shared the actual values. Sometimes you're a picture and sometimes just through a post in Twitter. People also describe that their glucose variability had improved a lot, that they had improved quality of life. They didn't feel like they were burdened as much by having diabetes. The other thing that we saw was when they talked to their health care providers. There was this polarization. So some health care providers saw these hacked devices as being really beneficial. They could see the value in that someone's A1C was in range and that they just felt less burnt out or distressed by having diabetes. But on the opposite spectrum, we also saw health care providers who were really upset and didn't want them to be using these devices at all and felt like they were a huge liability. And so there was this polarized positioning of how individuals were experiencing telling their healthcare providers about these devices. The other thing that we saw was that, and I think this is really important that people appreciated that people could hack these devices in such a way that the technologies they were using could work together. So we know that interoperability is huge. And one of the things that we see is with certain insulin pumps and certain continuous glucose monitoring systems, some don't work well together. And when you can hack a system, you can actually make one device work with another that previously wouldn't work together. And so this allowed individuals to really use the devices that they felt made the most sense for them. And I think as we move forward in technology development, we need to really pay attention to interoperability. It should be about what patients or people living with diabetes feel that they need to be successful.
Host [00:43:58] Michelle Litchman is a nurse practitioner, researcher and technology innovator at the University of Utah, where she concentrates her clinical and research efforts on diabetes, digital health and disparities. Her research has influenced both policy and practice and fostered the citizen scientist movement as a Betty Irene Moore, fellow for nurse leaders and innovators. Michelle is focusing on technology that will provide patient education that's culturally relevant, linguistically appropriate and designed to be accessible in ways that meet the circumstances and needs of underserved and under-resourced communities at the U. Of U. She's an assistant professor in the College of Nursing, adjunct professor at the School of Medicine and family nurse practitioner at the Utah Diabetes and Endocrinology Center. Be sure to follow her and say hello to her on Twitter at Michelle Litchman that is M i c h e l l e. With the rapid growth of wearable technologies, remote sensors and data driven algorithms, our ability to monitor and manage, teach and coach connect and collaborate with people living with chronic conditions continues to grow. The COVID 19 pandemic was the big push needed to pick up the pace and adoption and the instigator that made meeting online the default for all things community education, celebration, collaboration and just so much more. And while the pandemic sparked a massive increase in tech enabled care, there remain significant challenges in prescribing and relying on technology dependent care. Challenges such as affordability, suitability, interoperability and the digital divide that prevent widespread access to broadband and wireless connectivity around the world. The pandemic also shifted a significant portion of our learning and social activities online, and as Michelle indicates, the diabetes communities can teach us a lot about life, online, peer support and the role social media can play in improving health, well-being and care delivery. A study reported in the Journal of American Diabetes Association found that social media was successful in helping patients gain knowledge and information and interact in their daily insulin adjustments. It helped them cope better with daily life, and this brief trial suggests that patients even preferred to communicate with their health care providers using social media, as Michelle notes. There's just so much technology involved with diabetes. This is what my patients use knowing about this technology. It's just part of my job, and there is just so much to love about Michelle's framing technology. Literacy wasn't optional for Michelle because increasingly it's not optional for her patients. And when it comes to the many dimensions and nuances of accessibility, Michelle's lived experience informs and helps her to embrace the complexity, the fine details and the importance of solving every syllable of accessibility. Michelle is the classic organic innovator by being part of her patients lives, then being part of hers and being in it for the long haul. She's in the communities and conversations where unmet needs surface. She's able to follow how and where the gaps in care and policy and technology manifest themselves and together as a community problem, solve and innovate because this matters to them every day. For SEE YOU NOW, I'm Shawna Butler. Thanks for listening.
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