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Exploring New Options for Patient Data Initiatives
Patient Data Initiative Playbook, Part Three
Jan 29, 2025
The world of patient data initiatives is evolving fast. Thanks to breakthroughs in technology and health data sharing, in addition to new federal regulations, it’s easier and more affordable than ever for organizations to collect and use patient data. In this third part of our Patient Data Initiative Playbook, we’ll dive into how these changes are unlocking new possibilities and how patient-centered approaches are making data initiatives more impactful than ever. Read part two of this blog series.
Looking back: How it all started
Not so long ago, patient data initiatives were limited to two main approaches, both of which had their challenges.
- Site-based data collection: This method involved staff at clinics or research centers manually gathering data from patients. While it was highly accurate, this approach was also expensive and time-consuming. It relied on patients being treated at specific sites, which meant the data often wasn’t very representative. Plus, tight budgets and limited time forced organizations to make hard decisions about how much data they could afford to collect and analyze.
- Patient-reported data collection: With this approach, patients shared their own health outcomes and experiences through secure websites or apps. It was a great way to hear directly from patients, but the data didn’t always meet clinical standards, which made it harder to draw reliable insights.
Both methods were expensive and rigid, making it tough for many organizations to even get started. And those that did invest often found the return disappointing, with limited actionable insights to show for their effort.
Where we are now: The power of hybrid models
Fast forward to today, and we’ve entered an exciting new chapter. Thanks to better technology and falling costs, organizations now have access to hybrid models that combine the best of both worlds. These models bring together clinical data from electronic medical records (EMRs) with patient-reported experiences and outcomes, resulting in a more detailed understanding of patient health.
Even better, patients are becoming active partners in this process. With direct access to their EMR data, they can share critical information, reducing the need for labor-intensive site-based methods. By engaging patients and caregivers, organizations can streamline data collection while making it more personal and meaningful. In some cases, instead of relying on clinics to identify the right participants, organizations can turn to patients themselves to report data that meets study criteria.
What makes hybrid models so effective?
- They’re faster, more accurate, and more comprehensive.
- They save money by reducing reliance on clinical sites.
- They simplify long-term studies by making it easier to gather data over time.
- They focus on what patients and caregivers care about most.
- They reduce the burden on participants, making studies easier to join and complete.
What’s next: The future of patient data initiatives
With all the tools and technology available today, the possibilities are endless. Patient data initiatives are no longer limited to collecting basic clinical data or standard survey responses. Now, organizations can add new layers of information, like imaging, at-home biospecimen collection, and data from fitness trackers. Studies can also capture a patient’s health journey over time, combining clinical records with patient-reported data for a much richer perspective.
This new wave of patient data initiatives is opening doors to a wide range of exciting opportunities, including:
- Discovery services: Finding new drug targets, uncovering biomarkers, and validating treatments through advanced data analysis.
- Better trial design: Identifying markers and endpoints that predict disease progression, making clinical trials more effective.
- Natural history studies: Tracking how diseases develop and progress in different patient groups to inform care and research.
- Data licensing: Giving researchers and organizations access to de-identified data to fuel new discoveries.
- Patient insights: Making sure the patient voice shapes drug development by incorporating their experiences, needs, and priorities.
Of course, as the volume and variety of data grow, researchers need the right tools to keep up. Scalable storage, reliable partners, and advanced analytics are critical for turning this data into meaningful insights. We’ll talk more about these tools in a future post.
Moving forward together
The good news is that the limitations of old-school patient registries are a thing of the past. With today’s technologies and direct-to-patient models, organizations have an incredible opportunity to build innovative, impactful patient data initiatives. While scaling these efforts can be challenging, embracing hybrid models and patient-centric approaches is the key to unlocking faster clinical insights and improving care.
As we’ve explored, we’re at a pivotal moment for patient data initiatives. In the next part of this series, we’ll shift gears and focus on practical steps organizations can take to plan and launch successful initiatives.
To learn more about how IQVIA can help you with patient data, contact us at ppa-contact@iqvia.com.