Real-World Data: can we turn information overload into real-time impact?

Clinical Pathways

Reflecting on UpHill’s participation in the symposium The Impact of RWE on Clinical Pathways, we take a deep dive into how real-world data could be better aligned with the immediate needs of patients, healthcare professionals, and health systems.

Matilde Ferreira

November 15, 2024 · 6 min read

Broadly speaking, all routinely collected data on patient health - outside of controlled clinical trials - are known as Real-World Data (RWD).

The FDA defines RWD as:

“data relating to patient health status and/or the delivery of health care routinely collected from a variety of sources, such as electronic health records (EHRs), claims and billing activities, product and disease registries, patient-generated data from in-home settings, and data from other sources, such as mobile devices.” ¹

When we analyze this RWD, we produce real-world evidence (RWE):

“clinical evidence regarding the usage and potential benefits or risks of a medical product derived from analysis of RWD.” ¹

Real-world data have been widely used in research for purposes like tracking drug safety after release and observing patient disease progression over time. With the rapid expansion of healthcare technology—such as electronic systems, biosensors, and mobile and wearable devices—large amounts of RWD are now collected routinely. This wealth of information has immense potential to improve study design and address previously unmet clinical needs.

But could RWD be doing even more? Are there ways to use this information in real-time to improve care rather than only after studies are complete?

Reflecting on UpHill’s participation in the symposium The Impact of RWE on Clinical Pathways, we take a deep dive into how real-world data could be better aligned with the immediate needs of patients, healthcare professionals, and health systems.

To be clear, the value of RWD in assessing a medical product’s benefits in real-world settings is well-documented. The lack of strict eligibility criteria, the ability to track patient behavior in actual healthcare settings, and the potential to support research on high-risk groups - such as pregnant women and children - make it invaluable, especially for research that randomized controlled trials (RCTs) cannot always accommodate.

However, aren’t these approaches working at two very different paces? While RWD may be more cost-effective than an RCT for assessing, for example, the safety of a drug used in heart failure treatment, could this traditional approach fall short of the real impact that the same data could have on managing disease in real-time? Used effectively in day-to-day practice, couldn’t real-world data create a transformative impact on patient care?

Real-World Data & Journey-Based Care

Let’s take a step back to address the critical challenge facing healthcare systems worldwide: demand for care is skyrocketing - driven by an aging population and rising rates of complex chronic diseases - while healthcare capacity, regarding available health professionals, remains largely stagnant. This widening gap leads to familiar issues: long waiting lists for appointments, delays for surgeries, and overcrowded emergency departments.

In this context, healthcare professionals don’t need an overwhelming influx of data that complicates their work; they need precise, relevant data to make informed decisions at the right time. Health systems don’t need to invest in the latest technology for technology’s sake; they need to focus on interventions that have demonstrated potential to improve patient outcomes. And patients don’t need the newest devices on the market; they need a healthcare system that’s available when they need it most.

UpHill has been refining the concept of Journey-Based Care, which relies on two core pillars:

Care coordination, integration, and continuity – focused on creating a clinical consensus around each patient’s care journey, ensuring visibility into patient progress, and applying individual risk stratification.
Automation to manage capacity challenges – balancing healthcare demand and response to optimize resources and efficiency.

In this approach, real-world data proves its value when it can influence the course of care for an individual patient while simultaneously streamlining care delivery on a population-wide scale. This involves:

Prioritizing patients who have immediate, pressing needs.
Monitoring each patient closely and acting proactively, especially for those who might otherwise struggle to access care (such as patients without family physicians).
Truly centering patients in the care process, recognizing that real-time data only works when patients actively participate.

This journey-based model, fuelled by real-world data, is uniquely equipped to respond to each individual’s unpredictable disease progression, adapting to meet needs as they arise.

The Journey to the Best Care

A few years ago, while reflecting on the global response to the COVID-19 pandemic, we observed that the future — and increasingly, the present — belongs to hybrid models that blend different types of evidence. Each of them plays a crucial role: scientific evidence should guide care delivery, serving as a map, while real-world data should drive real-time decisions - much like a GPS, offering real-time guidance based on constantly updated information.

This may sound idealistic, but it’s exactly what UpHill does every day. Believe it or not, all patients need is a mobile phone.

Disclaimer: This article draws on the presentations by Clara Jasmins and Eduardo Freire Rodrigues at the symposium The Impact of RWE on Clinical Pathways.

References

US Food & Drug Administration. Real world evidence. 2022. https://www.fda.gov/science-research/science-and-research-special-topics/real-world-evidence. Accessed 14 November 2024.

Matilde Ferreira

Content Strategy & Communication Manager

Graduated in Communication Sciences, early on fell in love with storytelling. Started off as a journalist and then pivoted to the public relations world, she was always driven to craft relevant stories and bring them to the stage.