Finalist: Building the world's largest dataset on Long COVID by Syed Rashid and Rahim Rasool

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

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.

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