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Why Now is the Time for Patient Data Initiatives
Patient Data Initiatives Playbook, Part 1
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 16, 2025

In part 1 of our Patient Data Initiatives Playbook, we will explore the defining moments in the history of healthcare data sharing to understand the perfect alignment of regulations, technologies, and patient empowerment we are seeing today. Read the introduction to this blog series.

The introduction of electronic health data

Today’s healthcare systems generate an enormous amount of electronic health information (EHI) from a variety of sources including electronic health records (EHRs), appointment scheduling, billing, laboratory information systems, and more. However, not too long ago, health data was stored as an inefficient network of paper records.

The introduction of EHRs and the transition to EHI promised advantages like increased security, improved storage, and enhanced accuracy. Yet, the transition was expensive and technologically challenging. In 2009, the U.S. federal government passed the HITECH Act, which accelerated the shift from paper to electronic medical data. This Act provided financial incentives to make the transition viable and ensured robust privacy and security measures, along with early promotion of health information exchanges and interoperability. This foundational moment set the stage for future digital health data initiatives, but many challenges remained.

Steps toward health data sharing and interoperability

Initially, EHRs created a patchwork system with varying levels of technology adoption and inconsistencies in data collection, storage, and communication, complicating data sharing efforts. These challenges were noted in the 2014 JASON report on healthcare, which called for a comprehensive overhaul of the U.S. health data exchange system to improve interoperability and patient care. It recommended adopting modern, secure, and scalable technologies to create an efficient and effective health data infrastructure. Other industries, like travel and finance, had already successfully navigated the delicate balance of data sharing, showing that freer data flow leads to better outcomes.

To address these challenges, the U.S. Federal government passed the 21st Century Cures Act in 2016. This Act was designed to create a strong, connected data sharing network by removing obstacles and enhancing interoperability. The Office of the National Coordinator for Health Information Technology (ONC) established the United States Core Data for Interoperability (USCDI) to support standardized health data formats and APIs. The USCDI continues to evolve, supporting more comprehensive data elements and further facilitating seamless data exchange across different health IT systems.

The move to patient driven data access

As healthcare data formats become more consistent, easing the burden of data sharing and exchange, the focus remains on improving patient outcomes. Keeping the patient at the center of any healthcare initiative is essential for achieving this goal. The 21st Century Cures Act also established direct and immediate patient access to their own personal EHI. Mandated availability of key health data and clinical notes through secure online portals promotes transparency and patient engagement. This can be leveraged by any organization interested in developing or expanding research programs. Data no longer needs to flow exclusively through complex and expensive site-based IT and study infrastructure but can be directly provided by the patients themselves. Since this mandate was enacted in 2019, patients are more empowered than ever to be integrally involved in their own care and contribute their personal medical information to research opportunities.

The perfect alignment

Over the past several years, the medical data landscape has drastically matured. Medical systems have achieved nearly universal digitization of medical records through robust EHR system implementation, and newly required interoperability standards are beginning to provide clearly defined pathways for easier data sharing.

Direct patient access to their personal health information allows patients to be integral partners in research. Patients can choose to share their health information with trusted sources like patient organizations and receive tangible benefits in return.

All the technical components to support efficient, modern patient-centric data initiatives now exist and are already hitting the market today. While many companies across sectors are eager to take advantage of these resources, nonprofit patient organizations, focused on mission-oriented challenges to improve lives and health outcomes, are uniquely positioned to mobilize their patient community. This community has already proven to be a powerful force in advocacy, fundraising, and now, more than ever, research.

Despite past roadblocks like costs, regulatory muddle, and technical inefficiencies, today’s landscape offers renewed optimism for patient organizations to implement complex patient data initiatives to support their missions.

Up Next: Key Benefits of a Patient Data Initiative

In the next part of the series, we will dive deeper into what patient organizations can gain when they leverage their connections to patient communities and harness the power behind patient-mediated access to their own personal health information.

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

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