LiveRare App

Globally, about 1 in 20,000 infants are diagnosed with Biliary Atresia, 1 in 52,000 newborns are diagnosed with Urea Cycle Disorder, and per 100,000 inhabitants, about 1.91 to 40.2 cases of Primary Biliary Cholangitis (PBC) are diagnosed. These statistics represent only a few out of the many rare liver disease patients across the globe. While most rare liver disease patients are underrepresented, as an organization, we are actively working towards increasing the level of representation available for the rare liver community. The rare liver community is as important and deserve a robust representation in the healthcare space.

For rare liver disease patients and caregivers, their journey is far from over. Because of the lack of support available for individuals with rare liver disease, patients of all ages, adolescent to working age, and their caregivers face a huge disparity in resources and information to manage their disease, especially in the digital health space. There is virtually no technological resource or mobile application that works in an interoperable manner throughout various platforms, queries and network of data that provides tailored education, and personalizes peer support for rare liver patients only. Additionally, most data regarding liver patients in existing registries are U.S.-based, creating another disparity in the access of information for the rare liver community around the world. Liver health is public health, and this underrepresentation of data and technology could have worsening consequences to global health in the long run. Thus, we set out to create an app catered specifically to the unique data field relevant to pediatric and rare liver patients and their caregivers. 

In order to address the lack of patient-centric, rare-liver-disease-focused technology and data for patients, we are developing a mobile health application, LiveRare, that provides rare liver patients with a centralized hub equipped with tools to track all aspects of their disease, tailored education on medical literacy, and peer support. LiveRare primarily consists of five features: symptom/lab tracker, medication tracker, Patient Education Toolkit, wellness and prevention tool, and a patient-to-provider input forum.

Our aim is to provide an extra helping hand for patients and caregivers, while also helping to advance research in an untapped field. For patients and caregivers, the app’s features can help log daily patterns in their disease, connect with updated information on rare liver disease, learn about medical literacy, and provide feedback on their experience as both a user of the app and as a patient. The symptom/lab tracker keeps track of past and present symptoms as well as biochemistry results from labs, while the medication tracker maintains a log of past and current medications the patient has used. These features are mostly to be used for the patient’s reference to save time for both patient and provider and increase patient satisfaction during medical appointments. The Patient Education Toolkit and the patient-to-provider forum acts as informational resources for medical-related inquiries and as a way for patients to voice their experiences to providers. Lastly, the wellness and prevention tools add an element of personalization to the user’s experience as an outlet to record their mood, diet, fitness activity, or notes during appointments, which can be synced to their calendar for accessibility. For other stakeholders, the consented information collected from this app will be used to guide corporations and other interested organizations on rare liver patient/caregiver experiences with mobile technology, symptom information, user retention rates, and rare liver research. Therefore,  LiveRare aims to bridge the inequity of information, increase the interoperability between providers and patients, and improve accessibility of digital health to the global rare liver community.

Our solution serves the rare liver disease community, including patients, caregivers, and providers. This community is usually not prioritized in discussions about liver health and public health, so there is almost no current mobile technology addressing rare liver needs. Thus, to open a space for liver patient empowerment and research in liver health IT, we utilize a combination of the app’s main features: the symptom tracker, medication tracker, Patient Education Toolkit, wellness and prevention tool, and patient-provider input forum.

For patients, the symptom tracker helps track and measure the severity, frequency, and nature of the user’s prioritized symptoms as well as lab results from medical appointments. The app also displays a visualization of a symptom’s change over time, which will aid in making the best decision for one’s treatment plan and determine how one can most effectively manage their condition. These symptom options will be personalized to the user’s rare liver disease and demographic information with recommendations on which symptoms to track at certain levels. Providers will be able to view useful patient data before and during the consultation to improve quality of care through efficiency and detail. Moreover, this solution will change how time is spent with patients, aiding providers in spotting signs of certain conditions earlier on. Rare liver diseases are often underdiagnosed and misdiagnosed, so focusing more on health prevention than correction could change the disease trajectory for many patients.

Next, the app’s medication tracker allows patients to log all past and current medications, supporting multi-user sharing to facilitate a positive patient-provider relationship and alerting users at appropriate times for refills and expirations. This feature is not meant to replace existing health data in electronic health records but is meant to assist patients in organizing medical information in one core knowledge base for use in confirming with medical professionals. From the provider perspective, the information in the app can help physicians double-check the patient’s understanding of their medication and how long an individual has been taking the medication, verifying interactions and mitigating recall error.

Additionally, the Patient Education Toolkit acts as a consolidated database for rare liver patients to access guides on self-care, current clinical trials/news, and insurance plans (U.S. specific). Our intention in adding this feature is to guide our users in developing the health literacy skills necessary to have more productive conversations with their providers and make informed and confident decisions about their health.

We also recognize that living with a disease, especially a rare disease, can be mentally and physically exhausting for many, so the app is equipped with a wellness and prevention tool. The tool can be personalized to the patient’s needs for logging mood, nutrition, daily activities, fitness, etc. or for taking notes during medical appointments as each note page can be synchronized with Google Calendar. Diet and fitness are key in managing a liver disease, so this tool is intended to unify information on one’s daily habits for use in potential treatment plants.

Finally, our patient & provider input forum serves as a safe space to provide feedback about the services in the app as well as input on improvements in care coordination and management for liver patients. Providers can provide input on any improvements they can make regarding patient care and interactions, adding advice and strategies to be shared with patients. Because apps are easily adaptable, the feedback from this forum will advise our direction in implementing new features, removing existing features, and shifting the user interface to foster an interactive and positive user experience.

As a mobile app, LiveRare can easily collect demographic data. Currently, there is almost no research in regard to mobile health technology use for managing liver disease, so with the consent of the app user and with an emphasis on patient trust, we hope to collect data for use towards research that will fundamentally benefit rare liver disease patients in the long-run such as interest in certain clinical trials or statistics for rare liver diseases outside of the United States.

Ultimately, the goals of the app for rare liver patients are to educate, empower, promote self-care, and strengthen relationships between patients and clinicians. Thus, we understand that our app will be an ever-evolving project based on continuous input from our users and from the liver community. Later, we can see this project expanding to include the entire liver community, including rare disease patients that are afflicted with liver comorbidities, so we will endeavor to create a welcoming space for liver patients in mobile health.

Thanks to the collaboration between the Pediatric and Rare Liver Disease team, the Pediatric and Rare council members, and GLI’s leadership, we are confident that we have the necessary foundation and capability to execute this project well. As a patient-founded organization under Donna Cryer’s leadership, GLI and our Pediatric and Rare Liver Disease team has maintained the vision of prioritizing patients in all aspects of the rare liver conversation. Robert Mitchell-Thain, our department’s chair, CEO of the PBC Foundation, and an esteemed patient-advocate for 20+ years, resides at the forefront of this project, providing unique guidance based on his experience developing and implementing the PBC Foundation app, a mobile health app specific to PBC patients. Through this expertise and information, we can use the blueprints and data from the PBC Foundation app as a basis for creating LiveRare. The rest of the Pediatric and Rare team consists of Royze Cachero, program manager and team lead, Anna Lin, Patient Education Toolkit lead, and Chloe Kim, development lead. With the combined skills and knowledge of our members in health administration, public health, computer science, and health sciences, we are sure of our preparedness in developing LiveRare.

In addition to our team, GLI’s other departments and connections like the Advanced Advocacy Academy and the NASH team can act as resources for patient feedback during our user testing and JAD sessions. Our carefully built relationships with the Pediatric and Rare Liver Disease council members can act as networks for expanding and improving upon our solution in a way that balances all stakeholders involved. Our GLI corporate partners are also happy to undertake future initiatives of funding this solution as well. Our team values collaboration, and through our extensive network, we are capable of further ensuring that we properly and successfully serve the rare liver disease community. 

Because a large-scale initiative like LiveRare needs many resources, we are applying to Solve to acquire both funding and more partnerships. With the additional financial support, we will be able to create market research test groups and fund an expansion of our team to include moderators of the patient forum, on-hand IT personnel, and app developers. Expertise from the panel of judges will also be used to guide future directions of the project. Overall, we want to have the means to develop and improve this app as much as possible, so we want to establish a breadth of funding and assessment.

Mobile health apps have become a main stay in the current digital health environment. However, uniquely, our solution addresses the underrepresentation of this technology catered towards rare liver patients. Thus, our solution acts as a fresh application of an already existing technology in a market where the need for rare-liver-centered IT is high. The LiveRare App is created for rare liver patients in any stage of their disease. From individuals who have long-experienced rare liver disease to those who have been recently diagnosed, every patient can receive guidance on how to manage and track their disease. While paper diaries can be a tool for symptom-tracking, they have been proven to be more inaccurate and unreliable than technological interventions. Thus, as a mobile health app, our solution acts as a holistic tool to support patients.

As a mobile app, our solution contains many optimal features to increase patient-centricity and accessibility.

First, as an app, our solution can prioritize inclusivity through personalization and accessible design. For example, through the wellness and prevention tool, patients can integrate their notes about their mood, diet, fitness, or medical appointments with Google Calendar for quick organization and access; through the biochemistry tracker, units can be adapted for all international users. Our patient-education toolkit can guide those navigating the complex health insurance system, while our patient input forum can personalize connection to peer support.

Second, the flexible nature of app development allows relatively quick changes to be made based on feedback and testing. Because of this easy adaptability, we can work with various prototypes and additions of best practices in other digital health resources to fine-tune what rare liver patients require and want to see in a daily tool. For example, in our discussions, we have discussed gamification of symptom tracking to improve user retention rates which is one feature we can experiment with based on user input.

Third, a mobile app can collect data for use in research and advising. There is no app tailored to the unique demographic of pediatric and rare liver disease patients globally, and our app can close this gap. With the Global Liver Institute’s international reach through our International NASH Day partners and our global corporate partners, we have the capacity to push this app and subsequent patient-permissioned data collection outside of the United States, adding diversity to current rare liver data. We will emphasize clearly during the implementation of the data collection aspect of our solution how the data will be used and protected to establish trust with the user. Because the user is voluntarily using our app and the information collected will increase the amount of rare liver disease technology research available, we take anonymization, privacy, and encryption of user data very seriously. Thus, we intend to heavily invest in security.

Finally, one non-negotiable is that our app must be free and available on all app store platforms to extend its outreach and functionality to as many individuals as possible. About 6.6 billion individuals worldwide or 85% of the world’s population use a smartphone. Thus, we hope to reach the overlap between the global rare liver community and the vast amount of smartphone users to empower as many patients as possible.

In the next year, we aim to finalize and release the initial prototype for the U.S. release of LiveRare for both iOS and Android phones. During the first 6 months, we intend to reach at least 10,000 rare liver disease patients and introduce this initiative to all GLI’s stakeholders. Furthermore, we plan on conducting several user tests with rare liver patients, gather information from clinicians and hepatologists, discuss business processes and strategies with industry partners/payers, and consult with our Advanced Advocacy Academy’s (A3) peer support, digital health, and community research ambassadors to improve the app’s user experience. As technological literacy might be a challenge for patients using this solution, we aim to create promotional materials on the “how to use the app” section of the solution alongside the development process. To streamline this process, our A3 ambassadors will be trained to teach tutorials on using the app to increase technological access. These goals will require more funding and an expansion of our team.

In the next five years, we hope to extend the app’s scale to at least 15 countries and reach at least 100,000 individuals. This outreach requires more usability testing specific to the country, expanding language translations, consulting with country-specific hepatologists and clinicians, and advertising the LiveRare App through data and patient stories obtained from the U.S. trial period. This stage will be a scaled-up version of our 1-year plan and will require much more funding and expansion of personnel as well.

Our short-term indicators of progress, which will be assessed every other month, are the amount of funding obtained, amount of user trials conducted, positive user feedback from user trials, number of experts consulted, number of U.S. users, and U.S. user retention rates for the LiveRare App compared to that of other mobile health apps.

Our long-term indicators of progress, which be assessed every year, are feedback from users and clinicians in terms of helpfulness of app’s features, patterns in symptom-tracking from users, change in number of users worldwide, demographic information of users to make sure we’re reaching as many users as possible, and accessibility feedback from users.

Our solution is powered by mobile application technology in the form of software for smartphones. This software will be able to be downloaded on one’s smartphone device from an Android or iOS app store and will be developed through Java (the previous official language for Android App Development) and Swift (programming language for developing iOS solutions). Our solution specifically will be a native mobile application which has better performance, higher security, and better user experience than hybrid apps. As a native app, more coding is required on our end as we must develop an app specifically catered towards a mobile operating system. However, we feel that this is a necessary step to create a positive user experience and a maximally performing app since native apps don’t require the user to download data from a server through an internet connection. 

As a forefront organization in the liver community, Global Liver Institute prides itself on our application of diversity, equity, and inclusivity. Through the composition of our departments, initiatives, and collaborations with multiple organizations, we strive to embody these values in our work. Though we come from various backgrounds, we remain committed to a human-first, team-member-second approach, championing a growth mindset and valuing each other’s beliefs.

This framework will certainly translate into our app development and execution. As rare liver disease affects everyone in all walks of life, it is important that we properly represent and provide information for patients and their families from different races, ages, sexualities, experiences, etc. in an accessible manner. Furthermore, we believe that all stakeholders involved in the care of patients, including the patient, families, caregivers, providers, payers, and other relevant organizations, are an essential part of our developmental process for the LiveRare App. Thus, we will carefully listen to the diverse opinions of all our stakeholders.

We will use two business models for the LiveRare App. Primarily, we plan on using the licensing business model, licensing patient data for research. Under this business model, organizations, universities, or researchers can request access to patient data, which are licensed through LiveRare to use for clinical study or other research purposes. Secondarily, we plan on charging third parties for surveying patients through our app. Under this business model, organizations or researchers can directly receive feedback from patients or their families from research-specific surveys to pinpoint any necessary data. These business models will provide our team with the capital to further improve the app as well as provide access to data for various research purposes. 

Our team plans to initially utilize grants and sponsorships from GLI’s corporate partners for the developmental stages of the LiveRare App. In addition, we will use any capital from our business models to improve upon our initial designs and interfaces. 

There are several options for financial sustainability for the app. Now, our team is looking at potential sponsors from the Pediatric and Rare Liver Disease council members, such as Albireo, Mirum, Travere, and Intercept, who are interested in partnering with GLI to develop the LiveRare App. Furthermore, grants like the Horizon Award 2022 will be a wonderful additional resource for further development of the LiveRare App.

Initially, our team plans on spending $150,000 during the development stages, which include JAD sessions, user-face testing, and prototype development.