Finalists and Winners
Explore all the finalists and winners for the 2024 Long COVID Healthathon event.
Strong Haulers envisions a marketplace where patients sell data to pharmaceuticals, addressing the industry's struggle to access data for drug development.
Project Case Study
Strong Haulers: Catalysing Drug Development with Data
Strong Haulers envisions a marketplace where patients sell data to pharmaceuticals, addressing the industry's struggle to access data for drug development. We developed an application that offers insights into symptom triggers and effective treatments.
During the 18-month pilot with 50 participants, Strong Haulers collected 18,000 data points and empowered users to validate experiences, discover symptom management strategies, and advocate for themselves with providers.
Long COVID research faces recruitment challenges as it focuses on the disease's pathology rather than offering patients insights for symptom management (See Opportunity Area 8 in Health+ Report). The technology addresses this gap by providing actionable insights, generating the necessary data and patient pools for pharmaceutical innovation.
The service will be free for patients while Strong Haulers will share data profits to achieve financial sustainability.
Our Journey
Strong Haulers emerged from founder Ibrahim Rashid's struggle with Long COVID. Disappointed by wearables tailored for athletes rather than symptom tracking, he resolved to create the technology he lacked during his illness with support from various stakeholders:
They launched their company at the Clinton Global Initiative, showcased their pilot findings at TechCrunch Disrupt, and received entrepreneurial coaching from the University of Chicago’s Social New Venture Challenge.
They interviewed patients from Body Politic.
Their advisors are Ryan Prior, author of the Long Haul and board-chair of ME Action; Dr. Ahmad Garrett-Price, a Board-Certified Family Physician; Kaakpema "KP" Yelpaala, a digital health entrepreneur; Lenka Beranova, a social impact entrepreneur.
Insights from the pilot include:
Empowerment through Data
Technology can validate relationships between activities and symptoms.
Clear and Actionable Insights
Summary reports can guide treatment strategies, support chronic illness management and promote collaborative care. This is supported by research (Fu MR. Real-time detection and management of chronic illnesses. Mhealth. 2021;7:1. Published 2021 Jan 20. doi:10.21037/mhealth-2020-2)
User Friendly Design
Simplicity and customization is key for user retention.
Lean approach
Free, affordable, and low-code tools allow for rapid feedback and prototyping.
One of their users shared: “Working with Strong Haulers to track my symptoms has been helpful with managing my chronic illness. Having data about my symptoms helps me manage my daily activity more efficiently. I share my symptom tracking data with my medical team to help evaluate the effectiveness or current treatment plans or help develop new treatment plans.”
Obstacles encountered in the past two years include:
Market Positioning
Startups face pressure to achieve billion-dollar valuations and exponential growth. While chronic illness patients benefit from data tracking, uncertainty remains about their willingness to pay and if margins meet venture capital expectations. Alternatively, partnering with healthcare providers for chronic symptom management faces hurdles due to reimbursement issues like the absence of CPT codes for Long COVID.
Moral Hazard
The founders struggled with burnout from witnessing user trauma resembling their own experiences. This, coupled with a lack of market readiness for Long COVID, made it hard to transition from full-time jobs with health insurance to pursuing the venture full-time.
Vision for the Future
Strong Haulers aims to carve out a distinct go-to-market strategy, diverging from competitors like Pathize and Visible. Rather than integrating with clinical workflows or expanding wearable functionality, the company will build the infrastructure and partnerships crucial for pharmaceuticals to access patient data for drug development. Research has already shown the importance of including patient-reported symptoms to support cancer drug development and inform appropriate dosing (Williams LA, Yucel E, Cortes JE, Cleeland CS. Measuring symptoms as a critical component of drug development and evaluation in haematological diseases. Clin Investig (Lond). 2013;3(12):1127-1138. doi:10.4155/cli.13.108).
This commercial opportunity will mature once CPT codes for Long COVID are introduced, pending NIH action following a universally agreed-upon definition from the CDC.
Strong Haulers aims to leverage HHS' network to connect with pharmaceuticals, tailoring the marketplace to meet data and patient recruitment needs. Securing letters of intent from these stakeholders will inform technology development. Off the shelf-tools were sufficient to validate the prototype. We will build a functioning application once we have made inroads on market positioning with pharmaceuticals.
We aspire to position Strong Haulers at the forefront of data collection to catalyse Long COVID research and innovation, and build the emerging Long COVID Economy.
The Long COVID Smart ID card offers Long COVID patients more confidence to engage in the community and helps end the cycle of ED visits. The low-cost physical card and Acute Incident App improve health outcomes and quality of life; filling gaps in the care continuum.
Project Case Study
People with Long COVID (pwLC) experience scary, often emergent symptoms without any idea of what is happening to them, or how, when, or where to get help. This results in a lot of expensive emergency visits that often don't end with any real resolution or answers.
The Long COVID ID Card Team comprising three individuals who understand the challenges of living with LC and other invisible chronic illnesses has identified three key opportunities for people living with Long COVID (LC) today:
Although LC affects as many as 23 million Americans, many in the general population still do not acknowledge that LC is real. Even within the medical community, there is much debate on LC diagnoses and how to help patients. It is not atypical for LC patients to be underdiagnosed, misdiagnosed, and gaslighted rather than to be heard and assisted when seeking care and accommodation. This is particularly acute for underserved populations. There is an opportunity to address issues of legitimacy and credibility of condition and symptoms through governmental sponsorship of this solution.
PwLC can experience hundreds of different symptoms—many of which are clinically invisible and can go undetected using traditional medical testing and diagnostics—yet there is no medically defined ‘treatment’ for LC today. PwLC want to be treated as a partner in their care but lack accessible, easy-to-use tools and resources that can be shared with their care team.
LC can be isolating; it can lead to a loss of independence due to fear of emergency situations and lack of effective care if an incident occurs. There is an opportunity to improve outcomes in acute care situations and help patients and providers end the cycle of emergency visits and reduce the burden of care navigation and coordination.
To identify unique opportunities to improve the quality of life and care for pwLC, we studied existing LC research; conducted 1:1 interviews with patients, medical providers and caregivers; actively engaged and participated in LC patient groups on social media; and drew on direct personal experience.
Our Team facilitated a human-centered Design Thinking Workshop with members of an organic ‘Heard and Seen’ Slack group of individuals with chronic illness to imagine innovative solutions. Among 20 ideas generated, 4 potential solutions emerged which we prioritized with input from the LC and medical communities to determine viability and implementation risks. Journey maps and user flow charts were developed to inform design decisions for our top choice, and wireframes for a physical card, mobile and web-based screens were produced. A brand color palette and logo were created and applied to final assets.
Targeted research of scholarly articles and federal datasets helped us refine features that would be most relevant to users. Learnings were incorporated into the final solution which we present here today with adaptations made—including renaming the product “Long COVID” ID, mirroring the evolution of language used to describe pwLC today.
Our chosen solution, the Long COVID Smart ID (ID), is a Federal Government-Sponsored Solution for People with LC and their Caregivers. This multi-device, patient-centric ID uses QR code technology to direct users to a customizable Acute Incident App. PwLC incident reporting data can be shared with their providers to help identify trends and reduce ED visits.
This will:
Legitimize requests for care with a government-sanctioned ID.
Provide an accessible low-tech, low-cost hard copy and multi-device ID with QR code technology which directs users to a customizable Acute Incident App that uses AI-assisted data entry; Natural Language prompt; and text-to-voice capability.
Help siloed providers connect the dots between a patient’s acute episodes and their lived experience.
We identified opportunities to fill gaps in the care continuum beyond what our solution addresses. The Smart ID has the potential to integrate with existing technologies and organizations such as a 24/7 emergency call center service; MedicAlert’s partnership with NORD stands as a good model for the LC community. Doing so could address the challenges we identified regarding health data privacy and security.
The Long COVID Smart ID card and Acute Incident App strengthens community collaboration of care resulting in better quality of life, improved care outcomes, and increased autonomy and peace of mind for people living with Long COVID.
Our Long Covid Care directory app supports Long COVID awareness and innovation by connecting patients with verified specialists, validating their experiences, and providing essential knowledge for seeking appropriate care.
Project Case Study
The Long COVID Care Directory emerged from the pressing need to address the widespread frustration faced by Long COVID patients when seeking treatment. The Long COVID Care Directory emerged from the pressing need to address the widespread frustration and stigma faced by Long COVID patients. Our team consulted healthcare professionals, tech developers, and patient advocates, all bringing unique experiences to the table. With backgrounds in epidemiology, software development, and patient advocacy, we are united by a shared commitment to improving the healthcare journey for Long COVID patients.
Identifying the Problem
Many Long COVID patients report that their symptoms are often dismissed by healthcare providers, leading to a reluctance to seek treatment. Studies indicate that the wide range of symptoms associated with Long COVID complicates diagnosis and treatment for providers not specialized in this condition (Department of Health and Human Services, 2022; Righi et al., 2023; Ziauddeen et al., 2022). Our project aims to address this by creating a reliable resource for patients to find knowledgeable and empathetic healthcare providers.
Approach and Methodology
We began by conducting extensive user interviews with Long COVID patients and healthcare providers to validate our hypothesis that an online directory would improve the user journey. These interviews revealed that many patients felt abandoned by the healthcare system and faced significant barriers in finding appropriate care. This feedback was instrumental in shaping our project.
Our platform features a verification system and a peer-review mechanism, ensuring that listed providers are both qualified and endorsed by the community. We incorporated evidence-based sources and federal data, such as the Health+ Long COVID Report, to ensure our directory is grounded in reliable information. This not only adds credibility to our platform but also ensures that users have access to the most current and accurate information available.
Challenges and Obstacles
Throughout the project, we faced several challenges, including ensuring the accuracy and reliability of provider information. We foresaw initial resistance from healthcare providers who were unfamiliar with Long COVID and wanted to make sure that they understood our research behind the app to build confidence. By collaborating with patient advocacy groups and utilizing federal datasets, we were able to build a trustworthy and easy-to-use app.
Federal Information and Data Usage
We extensively utilized the Health+ Long COVID Report and other federal Long COVID data to inform our platform's design and functionality. This data provided critical insights into the symptoms, treatment efficacy, and patient experiences, which were essential in curating a list of competent healthcare providers. By referencing these sources, we ensured our platform was not only evidence-based but also aligned with current research and findings. Additionally, we utilize the Centers for Medicare and Medicaid Services (CMS) database to verify providers. However, we do not automatically add all providers to the application. Instead, providers must opt-in, confirming their understanding and treatment of Long COVID patients. This opt-in process ensures that users connect with providers who are committed to addressing Long COVID, thus improving the user journey of finding appropriate care. By referencing these sources, we ensured our platform was not only evidence-based but also aligned with current research and findings.
Impact and Innovation
Our solution stands out by addressing the specific pain points in the Long COVID patient journey, particularly the stigma and difficulty in finding specialized care. The Long COVID Care Directory simplifies the process of finding appropriate care, thus having a profound impact on patients' lives. By leveraging community endorsements and rigorous verification processes, we provide a novel approach to healthcare resource management.
Collaboration
This project exemplifies collaboration across disciplines. Our team worked with healthcare professionals, patient advocates, and tech experts to create a seamless and effective platform. This interdisciplinary approach ensured that all aspects of the user journey were considered and addressed.
More than just an online platform, the Long COVID Care Directory gives patients hope as they navigate the complex healthcare system. We connect patients with trusted, compassionate, and well-informed healthcare providers to transform Long COVID care. This will improve health and restore healthcare system confidence. Our project meets an immediate need and sets a new standard for patient-centric care and healthcare innovation.
Long COVID CARE is an easily navigable web application that helps patients suffering from Long COVID to find treatment options provided by CMS-licensed healthcare professionals by inputting their specific symptoms and location.
The team: Olivia Hebner, Kathryn Cronquist, Kyle Crane, Scott Senkier, Quan Nguyen, Tyler Whitaker, Kyle Follendorf, Ashley Lucero, Bryan Stapleton, Catherine Sun, and Christian Tjoa
Project Case Study
BACKGROUND
Summit Consulting is a quantitative consulting and data analytics firm that works with public and commercial clients to turn data into actionable intelligence. For our submission, we selected Track 1: People First.
A growing number of adults in the United States experience Long COVID, many of whom face barriers to finding and accessing the proper care. The United States Census Bureau Household Pulse Survey states that 17.6% of adults in the United States have experienced Long COVID. Further, of the adults who ever had COVID, 29.6% have experienced Long COVID. The Health+ Long COVID Report states that people suffering from Long COVID face many barriers to healthcare, including the person’s inability to easily identify healthcare providers to address their symptoms.
Summit Consulting’s solution, Long COVID Customized Aid and Resource Explorer (CARE), is a free-standing web application that removes patient barriers by providing access to care for Long COVID symptoms while also promoting disease awareness.
DATA
The Long COVID CARE application uses the following data sources:
Centers for Medicare & Medicaid Services (CMS) National Doctors and Clinicians file
Center for Disease Control and Prevention (CDC) Long COVID or Post-COVID Conditions page
Federal Long COVID data from CDC’s National Center for Health Statistics
Long COVID clinics in each state, collected by Summit Consulting
The CMS National Doctors and Clinicians dataset contains over 2.5 million CMS-registered providers at the clinician/enrollment record/group/address level. This publicly available dataset contains relevant information including each provider’s National Provider Identifier (NPI), name, geographic location, and specialty(s). This is considered the primary tool by which Long COVID CARE matches patients with providers near their location.
The CDC’s Long-Covid or Post-Covid Conditions page provides public information on symptoms commonly associated with Long COVID. The Long COVID CARE application crosswalks patient symptoms to CMS-registered providers with corresponding specialties. For example, patients experiencing headaches or dizziness will be matched with local neurologists as defined by the CMS National Doctors and Clinicians dataset.
Federal Long COVID data provides Long COVID statistics from the Household Pulse survey. The statistics provided within Long COVID CARE are based on the user’s location. Similarly, the Long COVID clinics information are aggregated for each state.
USING LONG COVID CARE
Users of the application begin by entering their address in the United States and selecting their Long COVID symptom(s) from a dropdown list. Available symptoms include general symptoms (e.g., respiratory and heart issues, neurological problems, digestive issues, and other symptoms associated with Long COVID (joint/muscle pain, rash/ changes in menstrual cycles). For the prototype, our team focused the application’s geographic bandwidth to the greater District of Columbia, Maryland, and Virginia (DMV) area.
After users select their active symptoms, Long COVID CARE ingests the data and returns a list and map of CMS-approved providers as well as Long COVID clinics that can provide appropriate treatment to address each symptom. This list of recommended providers is ranked by proximity to the user’s location and is located on the top right side of the application. The list also includes the facility name, address, telephone number, provider name, type of specialty, and the distance from the user’s address. The map with pins for the user’s location and for each provider’s location appears on the left side of the application.
Based on the user’s state, the application also populates four boxes with statistics from the Household Pulse Survey Long COVID data. These boxes are located in the bottom right side of the application and include the following statistics: the percent of adults who have contracted COVID, the percent of adults who have experienced Long COVID, the percent of adults who have had COVID and have also experienced Long COVID, and the percent of adults who are currently experiencing Long COVID.
Although Long COVID CARE is currently localized to the DMV area, our goal is to expand access to healthcare providers for individuals suffering from Long COVID across the entire United States. Long COVID CARE increases accessibility for patients by simplifying the first step of finding care, both for individual providers as well as Long COVID clinics. It may also reveal locations that currently do not have enough resources for an individual to get the care they need. We hope that our application can shed more light on healthcare access and inspire further research.
Storify empowers patients with Long Covid by inviting them to share experiences, advocate for their needs, and address their healthcare challenges. It promotes innovation, raises awareness, and advocates for patient involvement in healthcare decisions.
Project Case Study
Storify is an innovative concept uniting patients, providers, and researchers to tackle the challenges of Long Covid. Through storytelling and data-sharing, Storify drives innovation, fosters understanding, and amplifies voices in healthcare.
Four years ago, in the spring of 2020, patients coined the term 'long COVID' to describe a form of viral infection from which recovery seemed impossible. They united to understand the condition, its symptoms, challenges, and potential solutions, as they often found themselves isolated in their struggles. Through social media, they shared their healthcare journeys, revealing patterns that demanded attention and change, and even offered solutions.
Unfortunately, the healthcare system operates in silos, hindering the voices of those most impacted from reaching researchers, healthcare providers, and policymakers. Long COVID compelled researchers and providers to engage more deeply than before, as they read lived experience stories online, recognized, learned, and unlearned together.
These narratives helped researchers refine their questions and informed providers that the condition was real and not merely psychological.
As design researchers, we always prioritize placing those most impacted by a design at the forefront. We explored how to center individuals living with long COVID, their caregivers, healthcare providers, and researchers, fostering collaboration among them. The healthcare system is immensely complex, and meaningful progress cannot be achieved without these stakeholders connecting, sharing, and learning from each other.
Storify is a safe platform for sharing stories, journeys, needs, solutions, and ideas, where those most impacted by the healthcare system are connected directly or indirectly, considering their busy schedules and sensitive situations. Based on two years of research with people living with Long Covid, healthcare providers, and researchers, Storify aims to address issues hindering collaboration among these three sectors and encourages their active involvement. Storify fosters partnerships instead of viewing patients as mere participants or end-users and values lived experience as a form of expertise.
Storify not only offers a fresh perspective on the current system but also introduces another, much needed, data source to complement evidence-focused research in healthcare. Additionally, as the description of health has evolved, it is no longer merely conceived as the absence of disease, but rather as a holistic consideration of one's well-being. This shift dramatically changes how professionals, patients, and the public engage with the topic of health (Huber et al., 2011). Now more than ever, we need to explore alternative research approaches, and Storify does this by examining care through an exploratory design research lens in combination with evidence-based research. As we witnessed, the absence of relevant evidence-based knowledge led to people living with Long Covid being overlooked and undervalued.
Storify aims to prevent over-researching certain topics and focuses on addressing the right questions at the right time.
The concept took shape as we delved into the stories and data shared on social media platforms, identifying improvement potentials, barriers, and data security concerns. Following an in-depth secondary research on healthcare systems and the value of patient-provider participation in healthcare, interactive interviews were conducted with providers, people living with Long Covid, and researchers. The result of data analysis led to the development of Storify. The project is currently in the feedback phase, with the next step being the redesign of features in collaboration with individuals with lived experiences.
The platform has been designed with the people who have lived experience and not simply for them. This collaborative approach ensures that their needs and dreams are addressed and they are empowered to take action.
Storify addresses the innovation ecosystem opportunity highlighted in a Long Covid report. It creates a platform for individuals living with a condition to advocate for their needs and fosters a space for partnership with researchers and providers. This enables meaningful and impactful research to be conducted and facilitates timely action, potentially leading to rapid innovation and breakthroughs.
In the journey to address the complexities of Long Covid, Storify emerges as more than just a platform—; it is a catalyst for collaboration, innovation, and empowerment. By amplifying the voices of those affected, breaking down silos between patients, providers, and researchers, and fostering meaningful partnerships, Storify paves the way for impactful change. It's not merely about sharing stories; it's about transforming experiences into action, driving forward a future where every voice is heard, every need is valued, and every step brings us closer to a healthier future.
Augment wearable-measures and scores, that lack personalized outcome data to validate their utility, with performance measures used in fatigue-risk management as well as other relevant measures such as mood.
Project Case Study
What problem was the team trying to solve? Why did you choose that particular problem? How did you use federal information and datasets in the course of the project?
The development of the LongHauler Companion Platform by PhysioForecast was motivated by several factors: 1) Health+ Long COVID Human-Centered Design Report (ref. 1) highlighting the need for better data tracking, 2) interest within longhauler (LH) (and related ME/CFS) communities in current wearable consumer-scores (ref. 2), and 3) a compelling in-depth longhauler interview further underscoring the need for such a platform that addresses:
Improved Long COVID data tracking: provide longhaulers with better data for personal monitoring and support services – aligned with the Health+ Report Opportunity Area 5: Structural Capacity,
Accommodation guidance: By providing comprehensive data tracking, we offer insight that for facilitating accommodation strategies - aligned with Opportunity Area 3, importance of accommodation guidance,
Facilitating telehealth: accessible platform provides holistic measures for remote monitoring thus facilitating telehealth services - aligned with Opportunity Area 6 emphasizing the importance of telehealth.
Our initial focus is on mental fatigue. Assessing, tracking, and eventually predicting mental fatigue remains a challenge. For instances, individuals have difficulty reporting the total effects of chronic sleep loss (ref.3), and sleep-measure reported-fatigue relationships in ME/CFS are mixed (ref. 4). Stimulant medications like modafinil may provide short-term relief but mask accruing brain fatigue. There is a lack of objective data on meaningful outcomes. These challenge how to track and thus manage fatigue for individuals and providers. These are areas of research but what can we offer to longhaulers now?
A first step to intervention is good data. That is what this proposal aims to address. To provide an accessible platform to collect data in the real world for both individuals with Long COVID (or ME/CFS) and their support system, as well as clinical researchers.
How did you approach your project? Who was involved in the project? What experiences did team members bring to the table?
Dr. Shashaank Vattikuti, Founder of PhysioForecast, performed the entirety of this. He is a quantitative physician-scientist with work in neuroscience/mental health and fatigue science (NIH, DoD). He has a background in computational modeling and building digital tools. He has also struggled with poor sleep for much of his life.
We took a two-pronged approach: 1) seeking input from those with or who support Long COVID, and 2) development of the platform based on prior work and input from (1). We reached out through social media, one-on-one requests, and the Long COVID Alliance. Received three positive replies from longhaulers and conducted one interview, in time for this report.
Interview: Adult female neuropsychologist with Long COVID since early 2023. Ongoing tiredness and mental fatigue, needing rest by mid-evening. Tried NAC and nicotine with some success. Interested in tracking data, found PF LH platform appealing for comprehensive measures and mental tests, and holistic view. Would “help with (her) sanity”. Wants data sharing with providers. Would like to inform work-team but through provider, based on this data. Supports having a user-forum. Will use platform on phone/computer, and desires updates and to support development. Potential interest in smartwatch/ring.
Based on initial considerations above and this target-user feedback, we are designing the platform with some key elements:
Holistic - capture a whole picture of the individual across time by including - wearable measures (automatic tracking but need better personal-validation), short mental and physical performance tests (well-tested for decades in fatigue (ref. 5,6) research), longhauler symptoms and self-reported energy/mood, real world (RW) outcomes (user-defined outcomes), RW contributing factors (potential user-defined contributing factors like stressors and interventions);
Environment – track informative external factors (e.g., local night/day, ambient light, pollen count, weather);
Personal – add custom measures for individuals, health providers, researchers, others;
Accessible - web-app works with common devices (computers/phones) and public computers via secured access;
Social support - share data with health providers, managers, etc. and feedback through user forum; and
Cutting-edge – PhysioForecast advances predictive models using this type of data - platform facilitates adding this functionality.
What obstacles did you encounter along the way?
Feedback from target-users was slow. However, given the positive feedback, including future use and support, we anticipate more input as we move forward.
Discover the C19LAP Patient-Developed Long COVID Model of Care at CLC3s, where integrated, holistic treatment plans not only enhance outcomes for patients but also streamline operations, reducing costs and improving satisfaction across all healthcare stakeholders.
Project Case Study
Long COVID care coordination at Comprehensive Long COVID Care Centers (CLC3s) adopts a holistic, patient-focused approach to healthcare delivery, integrating medical and social care to address the complex, multifaceted needs of Long COVID patients effectively. This integrated model prioritizes patient engagement and positions patients as active participants in their care, enabling them to guide clinicians and expedite tailored solutions. By organizing care activities and information sharing among all participants, CLC3s ensure safer and more effective outcomes, avoiding redundant treatments and fostering a cohesive care strategy. The centers emphasize high-quality interactions, cultural competency, and extensive training for staff, supporting seamless communication and coordination across various specialties. Regular team meetings, dedicated case management, and financial counseling address both the social determinants of health and the medical complexities of Long COVID, establishing CLC3s as "one-stop-shops" for comprehensive, patient-centered care. These centers also enhance patient empowerment through educational programs that improve self-management capabilities, making them pivotal in managing this chronic condition effectively.
The Program Leadership Team (PLT) at Comprehensive Long COVID Care Centers (CLC3s) orchestrates a structured, patient-centered care process designed to address the complex needs of Long COVID patients through a comprehensive, integrated approach. The process begins with an initial telehealth assessment conducted by the PLT, who preload the patient's medical data, develop assessment questions, and discuss the patient’s condition as a team before meeting virtually with the patient or their caregivers. This step allows the team to tailor the subsequent steps precisely, which may include referrals to specialists or further diagnostic tests. These appointments are arranged flexibly, with options to consolidate multiple appointments into a single day or two half-days to reduce travel and associated costs, enhancing patient convenience and reducing barriers to accessing care.
Following these initial assessments, the PLT reviews the outcomes and refines the patient's care plan, integrating input from various specialists and tests conducted. The ongoing care involves continuous monitoring and adjustments by the PLT to respond to the evolving health needs of the patient, ensuring that each phase of the treatment is effectively coordinated and that the care delivered is both comprehensive and continuous. Each patient is supported by a dedicated case manager who handles all logistical aspects, such as appointment scheduling and record management, further alleviating the burden on patients and caregivers. This cycle of personalized assessment, intervention, and reassessment continues for as long as necessary, with regular virtual check-ins to reassess the patient’s progress and adapt the care plan as needed. Through this model, CLC3s aim to deliver whole-person care that not only addresses the medical aspects of Long COVID but also considers the patient’s broader social and economic challenges, ultimately aiming to enhance overall patient and family outcomes in managing Long COVID.
The patient-developed Long COVID Model of Care, implemented by Comprehensive Long COVID Care Centers (CLC3s), demonstrates strong potential for effectively managing Long COVID through a highly integrated, patient-focused approach. This model is predicated on seamless care coordination that significantly enhances the healthcare experience for all stakeholders—patients, caregivers, clinicians, and healthcare systems alike. By positioning patients as active participants in their care team, the model leverages their insights to expedite and refine care solutions, ensuring that treatment plans are not only medically sound but also personally attuned to each patient’s specific circumstances.
Key to this model is its holistic approach that addresses the full spectrum of patients' needs—physical, mental, and social. This comprehensive care is streamlined through strategic scheduling and ongoing communication, minimizing patient inconvenience and optimizing treatment efficacy. The Program Leadership Team (PLT) plays a crucial role, initiating care with thorough assessments and continuously adapting the care plan as patient needs evolve, supported by a robust infrastructure that includes educational programs and logistical support through case managers. The integration of various services under one roof and the collaboration among diverse specialists foster a cohesive care environment that enhances patient outcomes, reduces costs, and contributes to the sustainability of healthcare systems. This model not only meets the immediate health needs of Long COVID patients but also anticipates and mitigates potential complications, promoting long-term health stability and patient satisfaction.
To read more about this project, click the PDF below.
Long Covid Symptom Tracker is a mobile application designed to empower individuals affected by Long COVID through advanced AI-driven symptom monitoring. The app's primary goal is to provide a platform for users to log and track daily symptoms.
Project Case Study
Problems Identified with Existing Resources
Lack of Centralized Information: Current resources for Long COVID are fragmented across various platforms, making it challenging for users to find comprehensive and reliable information.
Lack of Real-time Data Tracking: Traditional resources are often static and cannot track symptoms or progress in real time.
Generalized Information: Existing resources typically offer broad information that may not address individual-specific symptoms or conditions.
Solutions Provided by the Long COVID Symptom Tracker Mobile App
Centralized Information Hub: A comprehensive database within the app that consolidates information from reliable sources such as federal health data and peer-reviewed research. App provides a single, accessible source for users to find comprehensive and reliable information about Long COVID.
Real-time Data Tracking: With this App users can log daily symptoms and track their health over time. Including interactive elements such as reminders for logging symptoms and tracking progress. Providing patient condition summary reports and personalized insights based on the user’s data.
Personalized Educational Content: The App offers educational content, including articles, videos, and infographics, about Long COVID symptoms, treatments, and research developments. The App provides User engagement and satisfaction with an interactive and intuitive interface.
Raising Awareness: The App includes educational content, notifications, and reminders to keep users informed about the latest research, treatments, and recommendations regarding Long COVID. Improved public awareness and knowledge through targeted strategies to combat misinformation and stigma.
Approach and Methodology
Key Deliverables: The long Covid Symptom Tracker app is an intuitive mobile app interface. Implementation of AI-driven data analysis tools. Comprehensive research outputs detailing findings on symptom patterns and AI effectiveness.
Utilization of Federal Health Data: Incorporated federal health datasets to train the AI model. The accuracy of the app is ensured by the model's predictions are based on reliable and up-to-date health data.
Challenges:
Combatting Misinformation: There is a lot of misinformation about Long COVID circulating online. Correcting these misconceptions and providing accurate information is a significant challenge.
Overcoming Stigma: Long COVID sufferers may face skepticism and stigma, making it difficult to encourage open discussion and awareness.
Impact of the Long Covid Symptom Tracker App
Improved Patient Outcomes: AI-driven insights enable more personalized and effective management of Long COVID, leading to better patient outcomes. Empower users to self-manage their symptoms.
Reduced Healthcare Costs: The app's preventative and proactive approach to Long COVID management can lead to significant cost savings. The app is Scaled to meet the growing demand for Long COVID management tools.
Conclusion
The Long Covid Symptom Tracker app stands as a testament to the power of technology when aligned with human-centric values. It embodies the collective effort to not only manage a public health crisis but also to foresee and mitigate its long-term impacts. By harnessing the potential of AI and making it accessible to all, Long Covid Symptom Tracker gives voice to those silently suffering from Long COVID, offering not just tools for monitoring but a promise of recognition and action. This app is not just a utility; it is a guardian and a guide through the fog of uncertainty that Long COVID brings. As it continues to evolve and adapt, the Long Covid Symptom Tracker illuminates the path to recovery and resilience, reminding us that through innovation and inclusivity, we can tackle even the most daunting challenges.
This discussion guide helps Long COVID patients have more productive visits with their doctor.
Project Case Study
Often, patients bounce around the healthcare system without getting the care they need. The problem is multifaceted, contributed to by a lack of awareness about Long COVID among healthcare providers and patients often facing difficulty articulating their symptoms or not understanding how to navigate the healthcare system effectively. This project was conceived as a solution to this challenge.
The team behind this project included multiple Long COVID patients, a healthcare practitioner, an attorney, and a technical writer.
We chose to create a 1-page (front and back) resource in the hopes that it would be easy for Long COVID patients to understand and bring with them to their appointments. Our approach included group discussions about the problem, multiple feedback sessions, and iterations on the work product. Our main obstacle was trying to include all the important information in the discussion guide without getting distracted by secondary issues related to access to care for Long COVID patients. We incorporated the Treatment Journey section (pages 30-35) of the Health+ Long COVID report into our work product because it illustrates the challenges we’re hoping to address. Additionally, we recognized the significant numbers of disabled long COVID patients identified by the U.S. Census Bureau’s Household Pulse Survey when deciding to include additional information about obtaining disability benefits into the resource.
We will be sharing this resource on the Pandemic Patients website for free. We intend to continue iterating on the work product to strengthen its utility for Long COVID patients.
Long COVID Studies is a mobile-friendly website that makes it easy for people with Long COVID to learn about and enroll in research studies—and for the Healthathon, we're making the site even more patient-centered and educational.
To learn more about this solution, click on the PDF below.
Revolutionizing medical research by empowering patients globally. Transform your smartphone and wearable into research tools, allowing those with complex illnesses to actively participate in vital studies. All on an open-source, decentralized platform.
Learn more about this solution by clicking the case study PDF below.