Finalist: Longhauler Smart ID Card by Sarah Stern, Trudy Wonder, and Leah Shulz

Posted by Health+ Long COVID (Admin) 9 months ago Posted in Healthathon Finalists

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:

1. 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.

2. 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.

3. 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:

1. Legitimize requests for care with a government-sanctioned ID.

2. 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.

3. 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.

This post was edited on Sep 19, 2024 by Health+ Long COVID