The citizen scientist revolution: Empowering patient advocacy groups, patients and researchers with AI and multimodal data

Executive Summary

 

• Researchers often face significant barriers, including small, fragmented datasets, static registries, and limited technology, which stalls progress in getting new therapies to market for rare diseases or small populations.
• AI-powered patient support applications like Tempus’ olivia offer a new paradigm by providing immediate, tangible value to patients—helping them manage their care journey while simultaneously building dynamic, longitudinal, multimodal research registries.
• This patient-centric model transforms patients into "citizen scientists," empowering advocacy groups to generate the robust, real-world data needed to accelerate therapeutic discovery and improve care across oncology and other complex diseases.

Introduction

 

A serious diagnosis marks the beginning of a complex and often overwhelming journey. Patients and their families are suddenly tasked with navigating a fragmented healthcare system, managing appointments, deciphering medical records, and staying abreast of the latest research—all while coping with the physical and emotional weight of their condition. In this challenging landscape, patient advocacy groups serve as indispensable allies, uniting patient voices, providing critical resources, and driving research forward.

 

At Tempus, we believe patients empowered by advocacy groups hold the key to the next wave of medical innovation. The future of research lies in a symbiotic relationship between patient support and data generation. The convergence of the 21st Century Cures Act’s data-sharing mandates and the analytical power of Generative AI has created a historic opportunity for advocacy groups to transform patients from passive recipients of care into highly informed, empowered drivers of their own clinical journeys. Our AI-enabled personal health concierge, olivia, embodies this vision, creating a new model where patients become active partners in advancing research.

 

A new paradigm: The patient-centric data ecosystem

 

Tempus aims to provide tools that help patients navigate their own care while also contributing data to research initiatives. This is the principle behind olivia, Tempus’ AI-enabled personal health concierge.

 

olivia empowers patients by:

 

• Aggregating medical records: The application gives patients a complete, longitudinal view of their health by aggregating complex medical records, including genetic testing, radiology, and lab results, from across more than 65,000 institutions.
• Providing AI-powered assistance: olivia helps patients understand their health history and trends, prepare for appointments, and get personalized, educational responses to their health questions 24/7.¹
• Creating a single source of truth: Patients can manage their journey, track symptoms, and take notes, all within a secure, centralized platform.

 

Not only is olivia a helpful tool for a patient or caregiver navigating a condition, but it also allows patients to contribute their de-identified data to a larger research effort. This transforms the act of data contribution from a passive request into an active, empowered choice. Patients become "citizen scientists," directly fueling the research that could one day lead to new treatments for their community.

 

Building the research engine: From personal data to population-level insights

 

The olivia platform is more than a patient-facing tool; it is the front end of a powerful research engine. It is designed to create the "living data registries" that researchers need.

 

1. Capturing rich, multimodal data: A patient’s journey cannot be fully understood through clinical records alone. olivia captures a comprehensive, multimodal view by integrating:

• Longitudinal clinical data, including diagnoses, treatments, and outcomes.
• Patient-reported outcomes (PROs) through in-app surveys on symptoms, quality of life, and mood.
• Data from connected wearables and other lifestyle tracking sources.
  This granular, patient-driven data provides a 360-degree view of the disease experience, unlocking insights that are invisible in traditional datasets.

 

2. A scalable and efficient framework: To streamline the creation of these registries, Tempus established the ONCO-OLIVIA Master Protocol. This IRB-approved framework allows for the rapid and efficient launch of disease-specific sub-studies. Our partnership with Blood Cancer United to build a registry for pediatric Acute Myeloid Leukemia (pAML) is a prime example. By leveraging the master protocol, Blood Cancer United can establish a dedicated pAML sub-study with minimal administrative burden; its model is disease-agnostic and can be applied across oncology, cardiology, neurology, and other complex disease areas.

 

3. Powering collaborative research: All data collected through olivia is curated, de-identified, and harmonized within Tempus’ Lens platform. This secure, cloud-based environment provides patient advocacy groups and their research partners—from academic medical centers to the biopharma community—with a shared space to analyze data, discover novel biomarkers, and accelerate the development of next-generation therapies.

 

The impact across the healthcare ecosystem

 

This patient-centric approach creates a virtuous cycle that benefits the entire healthcare ecosystem.

 

• For patients: They are empowered with tools to better manage their care, feel less burdened by the logistics of their disease, and become active partners in advancing research.
• For advocacy groups: They can overcome chronic data limitations, generate robust real-world evidence, develop new research partners, and ultimately deliver greater impact for their communities.
• For researchers and biopharma: They gain access to the rich, longitudinal, and multimodal data needed to de-risk clinical development, optimize trial design, and accelerate the path to new discoveries.

 

Tempus is committed to providing the intelligent infrastructure that empowers patient advocacy groups to lead this transformation.

 

To learn how your organization can partner with Tempus to build the next generation of patient registries, contact us.

 

Note on Forward-Looking Statements: This content may contain forward-looking statements within the meaning of Section 27A of the Securities Act of 1933, as amended (the “Securities Act”), and Section 21E of the Securities Exchange Act of 1934, as amended, about Tempus and Tempus’ industry. These statements are not guarantees of future performance and are subject to risks and uncertainties. Tempus undertakes no obligation to update any forward-looking statements to reflect events or circumstances after the date of this article or to reflect new information or the occurrence of unanticipated events, except as required by law.

 

Footnotes

 

1. olivia is not a substitute for professional medical advice, diagnosis, or treatment.