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Key Benefits of a Patient Data Initiative
Patient Data Initiatives Playbook, Part 2
Harvey Jenner, Principal, Real World Networks, IQVIA
David Voccola, Senior Director, Technology & Registry Strategy, Patient Insights, Experience & Registry Solutions (PIERS), IQVIA
Melissa Rittase, Strategy Lead, Patient Insights, Experience & Registry Solutions (PIERS), IQVIA
Jan 22, 2025

In today’s rapidly evolving landscape of healthcare regulations, technology, and vendor offerings, patient organizations stand at a pivotal moment. As discussed in the previous post ‘Why Now is the Time for Patient Data Initiatives', the critical technical and regulatory components necessary to start a modern and impactful patient data initiative have perfectly aligned. Patient organizations now have the opportunity to tap into these resources while leveraging their strong community ties to build comprehensive and diverse research programs. A modern patient-centric data initiative will enable more robust and inclusive studies, ultimately advancing the mission and research goals. Read part one of this blog series.

Driving research with patient-centered data

The 21st Century Cures Act of 2016 has empowered patients like never before, allowing them to access and share their electronic health information securely. This shift enhances patient engagement and breaks down barriers that have historically excluded marginalized groups from participating in research. Patients no longer need to be treated at a major medical center to be included in critical research initiatives, opening the opportunity for a more diverse and inclusive population to participate and benefit. Incorporating diverse patient experiences enables the exploration of patient care dynamics across communities, helping to identify unmet needs in care management and treatment and develop targeted interventions to improve patient outcomes.

Participating patients can also directly benefit by receiving personal insights about their condition to improve their own care. This could include:

  • individual symptom tracking,
  • customized educational materials,
  • eligibility notifications for potential clinical trials, and more.

Combining direct access to patient-mediated data, a modern data pipeline, and advanced analytic tools accelerates research, leading to actionable insights more quickly. Patient organizations can leverage these insights and their community connections to build patient-centric research initiatives, aligning with their mission to prioritize patient needs and drive meaningful advancements.

Accelerating medical discoveries and partnerships

The convergence of a connected healthcare data ecosystem and an engaged patient community positions patient organizations to harness data that can accelerate medical discoveries, forge strategic industry partnerships, and improve patient care and outcomes.

Imagine a data pipeline that securely collects patient medical data over time, creating a rich longitudinal data asset. This asset, enriched with data from patient questionnaires, wearables, and other smart health devices, becomes a multi-dimensional resource. Such a resource is invaluable to so many stakeholders, including:

  • Patient organizations
  • Life sciences companies
  • Payers
  • Other nonprofits
  • Government organizations
  • Academic institutions
  • Community groups

For example, regulatory bodies like the U.S. Food and Drug Administration (FDA) and European Medicines Agency (EMA) are increasingly open to using real-world data acquired through patient data initiatives in their decision-making processes. This shift allows patient organizations to transition from being mere funders of research to becoming active drivers of innovation through patient health data initiatives.

Benefits of a modern, optimized data registry platform

A modern, optimized data registry platform enables patient organizations to:

  • Address research gaps and accelerate clinical developments.
  • Understand patient community unmet needs.
  • Influence policy and define clinical guidelines and guidance.
  • Equip patients with the information they need to advocate for their care.
  • Improve provider understanding of patient treatment needs.
  • Help investigators ask more relevant questions throughout the clinical research process.
  • Cultivate strategic partnerships with stakeholders in biomedical research, medical specialty societies, and therapeutic development.
  • Facilitate effective long-term follow-up initiatives to drive positive care outcomes.

These examples illustrate what a modern, patient-centric data initiative can achieve. By mobilizing an engaged patient community and accessing innovative technologies available today, patient organizations can modernize their data strategies. These modern data initiatives can enhance the exchange of critical information among those affected by a disease, foster strategic industry partnerships, deepen the engagement with the patient community, and ultimately improve health outcomes for the patients they serve. This transformation not only advances critical mission objectives but also ensures that patient voices are at the heart of medical research and innovation.

Up Next: Exploring New Options for Patient Data Initiatives

In the next installment of this series, we’ll discuss the evolution of patient data initiatives, exploring how advancements in technology and data exchange have transformed traditional registries into hybrid models that leverage cutting-edge technology and patient-centric approaches.

To learn more about how IQVIA can help you with patient data, contact us at ppa-contact@iqvia.com.

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