Boundless Potential: How Unlocking Big Data Can Change Health

Panel Consensus on Big Data Status

• The audience vote regarding "Big Data: Hype or Reality" was divided between "Reality," "Both," and "Neither," with the panelists collectively affirming it is a "reality" but falling short of early hype cycles.
• Murray Eakin (Quintiles IMS) asserts that while progress is real, the pace is slower than anticipated 5–10 years ago, though it is already impacting drug discovery, clinical trial efficiency, and value-based care benchmarks.
• Robin Thurston (Helix) argues that the industry faces a cultural gap where the expectation for "magical," immediate consumer experiences (e.g., Uber's 4ms response) is far higher in other sectors than in healthcare.

Barriers to Implementation

• Data Quality and Integration: Martin (ex-Obama administration CTO) identifies the primary barrier as "episodic and dirty" data; healthcare data is fragmented across silos (primary care, hospitals, pharmacies) lacking unified feedback loops.
• Cultural and Behavioral Barriers: A significant impediment is the failure to translate known insights into action; for instance, fewer than 15% of eligible Medicare patients receive paid transitional care services post-discharge despite clear evidence of efficacy.
• Incentive Misalignment: Currently, ~90% of physician revenue is tied to volume (seating throughput), leaving only 5–10% tied to value-based outcomes, disincentivizing the adoption of big data tools for personalization.
• Information Asymmetry: Despite public data showing a generic drug (Avastin, $50) is clinically equivalent to branded alternatives (Lucentis/Aliya, $3,500), 85% of prescriptions remain the expensive branded versions, driven by cultural habits rather than clinical necessity.

Project Data Sphere and Clinical Trials

• Origins: Founded by the CEO Roundtable on Cancer (initiated by George H.W. Bush), the platform was created to address the "silos" in clinical trial data following the death of Vice President Joe Biden's son.
• Growth: The repository has grown from 22,000 patient lives to over 100,000, becoming the world's largest open-access cancer clinical trial database.
• Impact: The platform now supports SAS tools (valued at $41 million) free of charge, resulting in 11 major publications in journals such as Nature and The New England Journal of Medicine.
• Synthetic Control Arms: The FDA has agreed to test "synthetic control arms" using historical data from 57 prior small cell lung cancer trials to potentially replace randomization to control groups.
• Projected Efficiency: Adopting synthetic controls could reduce clinical trial time by ~50% and costs by ~15%, potentially leading to the first increase in overall survival rates for small cell lung cancer.

Consumer Genomics and Precision Health

• Market Scale: Helix aims to empower consumers to unlock DNA data for health, ancestry, and fitness, leveraging the "quantified self" movement where a subset of users maintains complete, non-episodic data logs.
• Strategic Shift: The industry is moving from massive, incomplete datasets toward smaller, highly complete datasets for specific sub-segments to enable better analysis.
• Prevention Potential: Early genomic identification of conditions like Lynch syndrome (in a patient's 20s) allows for life-extending interventions decades before traditional diagnosis (e.g., at age 45).
• Cost Trends: The cost of genomic sequencing is dropping significantly (from ~$50,000 a decade ago to negligible today), alongside decreasing costs for storage and AI analysis.

Technology and Future Enablers

• Blockchain: Identified as a critical enabler for maintaining data distribution while ensuring privacy, allowing for the secure linking of genetic and clinical data without de-identification loss.
• Precision Public Health: The "All of Us" research program facilitates direct consumer data enrollment (approx. 40% of target); case studies in Louisville, Kentucky, show that GPS-tracked asthma inhalers led to a 27% reduction in uncontrollable asthma risk by targeting environmental interventions.
• Consumer Feedback Loops: Unlike healthcare, consumer tech (e.g., Uber, MyFitnessPal) utilizes real-time interaction data to continuously refine products; healthcare lacks this immediate "voting" mechanism from patients.
• Data Sovereignty: Panelists suggest that future systems will allow patients to directly deposit records into research repositories (e.g., via "Sync for Science"), bypassing institutional gatekeepers.

Policy and Legislative Context

• Value-Based Payment: Financial incentives are shifting toward rewarding organizations that reassemble the delivery system to achieve better outcomes, though this transition is slow.
• Regulatory Approval: The FDA's Oncology Center of Excellence (created by the 21st Century Cures Act) is expected to release guidance allowing trials to reference historical data sets rather than randomizing patients to standard care arms in rare cancer types.
• Global Collaboration: Cultural and policy differences in Europe (e.g., Germany) present challenges for cross-border data sharing, even with patient consent, necessitating a global dialogue on data usage.