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Three Trends That Will Influence Medical Specialty Data Initiatives in 2025
The confluence of advancements in personalized measurement, interoperability, and artificial intelligence is driving a new era of transformation in registries and similar data initiatives.
Nov 12, 2024
For medical specialty societies (MSS), the environment in which they launch and operate registries and other patient data initiatives is poised for significant change in 2025.
The last major shift in the way registries and patient data initiatives were designed was nearly five years ago, driven by federal regulations that mandated interoperability between clinical systems. Today, however, the changes are being propelled by a combination of peripheral trends that collectively have the potential to once again revolutionize the acquisition and use of clinical data to enhance patient care. As with the introduction of mandated interoperability, the journey towards transformation will be fraught with examples of incomplete solutions and all-in-one approaches that fail to address the inherent challenges of innovative methods. MSS leaders should consult experts with transferable real-world experience when evaluating how these trends will impact their initiatives, rather than relying on technology vendors promoting specific products.
Trend 1: Increasing levels of personalized measurement. The “quantified self” movement (self-tracking of personal health signals) has steadily grown in popularity since its inception in the 2010s. Initially driven by hobbyists repurposing early Internet-enabled medical devices to track their personal vital signs, personalized measurement has evolved into a multi-billion-dollar marketplace of consumer wearables and apps, many of which employ FDA-approved sensors and algorithms. Considering the Apple Watch outsold the entire Swiss watch industry combined last year1, and this year Dexcom released the first over-the-counter continuous glucose monitor2, this trend is expected to continue unabated into 2025. The ever-increasing ability for patient communities to generate personalized health data outside of a clinical setting with unprecedented precision and longitudinally will only be accessible to MSS leaders who transition from relying on traditional, case-based views of the patients in their data initiatives to embracing more holistic, multimodal views of these patients. In practical terms, the transition from building case-based registries for specific initiatives to building real-world data hubs capable of managing multiple modalities and initiatives (simultaneously and over time) will become mainstream in 2025. Quality-focused MSS leaders will appreciate that data hubs are the most effective infrastructures for creating clinical quality measures (CQMs) capable of better incorporating both clinician and patient experiences, and for keeping pace with the Centers for Medicare and Medicaid Services’ (CMS) latest “Digital” (dCQM) roadmap3, while leaders seeking to boost sustainability through collaborations with life sciences, payers, and other stakeholders will find data hubs the best choice for dynamically harmonizing, repurposing, analyzing, and securely sharing approved patient data.
Trend 2: Maturing of the interoperability ecosystem. The essential component enabling the above and below trends is a health data interoperability ecosystem that is expected to reach maturity in 2025 after several years of rapid experimentation and growth. Today, the reliable several years of rapid experimentation and growth. Today, the reliable methodologies for accessing health data from both clinical settings and patients directly are consolidated in an assortment of proven companies, all leveraging the de facto standard for interoperability, HL7 Fast Healthcare Interoperability Resources (FHIR). No single company or methodology dominates health data interoperability. Instead, MSS infrastructures will require the ability to employ multiple interoperability partners and methods simultaneously, even for the same initiative, well beyond 2025, further influencing the transition to modern data hubs. As this ecosystem maturity is at a tipping point, MSS leaders and their peers are increasingly eager to expand interoperable access beyond the “structured” data available today (i.e., health information stored as discrete variables with consistently defined values) to include “semi-structured” and “unstructured” data, which are important segments of electronic health records (e.g., clinical reports and clinical notes). Such access is needed to achieve similar data coverage as the legacy chart abstraction-based approaches employed by registries for generations; however, even when access to semi- and unstructured data is possible, the need for human review or abstraction can negatively offset much of the clinician burden reduction that initially drove interoperability.
Trend 3: Experimenting with Artificial Intelligence (AI). A leading contender to mitigate the burden associated with human review or abstraction of semi- and unstructured data is the nascent application of artificial intelligence methods, specifically those employing large language models (LLM) and generative pre-trained transformers (GPT). While still in the very early days, the first pilots of these approaches with MSS initiatives will focus on pre-populating traditional case report forms and/or enriching existing registry data with derived phenotypic or biomarker information. Both are expected in 2025. If successful, operationalizing AI-based abstraction of semi- and unstructured data will further influence MSS leaders to transition to modern data hub infrastructures capable of embracing both trends above – without which, there will be no data for the AI to process.
In summary, the MSS community must acknowledge and understand these three influential trends, which have the combined power to fundamentally transform how patient data initiatives are conducted. These trends equally apply to adjacent healthcare segments, such as clinical research and patient advocacy, where they are already being considered in infrastructure and operational decisions. Ignoring these trends, whether individually or as a community, will prevent medical specialties from embracing and driving the next great era of positive change in care delivery.
To learn more about emerging trends in data collection, click here.
1 Revolution Watch. (n.d.). Rolex and Apple Watch Market. Retrieved from https://revolutionwatch.com/rolex-apple-watch-market/
2 American Journal of Managed Care. (2023). FDA Approves First Over-the-Counter Continuous Glucose Monitor. Retrieved from https://www.ajmc.com/view/fda-approves-first-over-the-counter-continuous-glucose-monitor
3 eCQI Resource Center. (n.d.). Data Quality Management Strategic Roadmap. Retrieved from https://ecqi.healthit.gov/dqm?qt-tabs_dqm=dqm-strategic-roadmap