Real-world data (RWD) is transforming the healthcare and life sciences industries by providing the insights needed to drive innovation, improve patient outcomes, and accelerate drug development. Forty percent of life sciences organizations report that greater use of RWD is a top transformational trend, yet many still struggle to extract its full value due to discovery and access challenges.
Despite its potential, realizing the full benefits of RWD requires overcoming significant obstacles in data discovery, feasibility assessment, and privacy compliance. These components must be addressed holistically to build fit-for-purpose datasets that can accelerate research, reduce development resources, and enable delivery of more effective therapies.
Current Challenges with RWD Discovery and Evaluation
1. Fragmented Data
Across the healthcare value chain, the number of data sources is outpacing the availability of data aggregators. This rapid expansion amplifies the longstanding challenge of siloed healthcare datasets, making integration and accessibility even more complex. The introduction of new data formats further adds to this fragmentation, with genomics data serving as a prime example. While genomics data offers immense potential for advancing precision medicine and drug discovery, it also compounds the data universe by introducing vast, complex, and highly dimensional datasets.
2. Inefficient Data Discovery
Most clinical studies require linkable, fit-for-purpose datasets, but identifying the right data source can be a time-consuming and uncertain process. It often takes months to validate whether a dataset contains the necessary attributes for a given research question. We’ve heard from data consumers that approximately 40% of data purchases fail to deliver expected results, leading to extended research timelines, increased R&D costs, and delayed value realization.
3. Data Movement and Access
Data sources and aggregators must balance the need to protect their datasets while enabling access for potential consumers. Traditional data-sharing methods require organizations to move copies of datasets, reducing visibility into how data is being evaluated and increasing security risks. At the same time, data consumers need better ways to assess dataset utility before purchase, ensuring alignment with research needs.
4. Privacy and Security
Addressing compliance with HIPAA, GDPR, and other privacy regulations is a top priority for organizations dealing in health data. Privacy-preserving measures are critical to maintaining customer trust during the pre-purchase feasibility process, but with the current tooling available in market, this often results in lengthy timelines and incomplete pre-pruchase assessments. Organizations must find ways to balance privacy and security with the need for collaborative, rapid data assessment.
Advancing RWD Discovery and Evaluation with a New Approach
To address these challenges, industry leaders are introducing innovative, privacy-first solutions that enable more efficient and secure data discovery and evaluation.
1. Limited Data Movement
Instead of transferring sensitive patient data, organizations can tokenize datasets within their own cloud environments. This approach preserves privacy by allowing researchers to evaluate the relevance of a dataset without direct access to raw records.
2. Simplified Data Discovery
A centralized platform for data discovery enhances transparency, helping researchers quickly find and evaluate high-utility data with less manual back and forth. Data consumers can also benefit from evaluating multiple data providers simultaneously, performing custom feasibility assessments across datasets of interest.
3. Privacy-Preserving Data Evaluation
Leveraging privacy-enhancing technologies like AWS Clean Rooms enables secure analysis of patient overlap between datasets without exposing underlying data. This fosters trust among data producers and consumers while addressing compliance with data protection regulations.
4. Efficient and Scalable Data Sharing
By implementing structured data-sharing frameworks, life sciences companies can facilitate seamless access to critical RWD while minimizing unnecessary data movement. This approach reduces inefficiencies, accelerates research, and supports compliance with evolving regulatory requirements.
How a Cloud-First RWD Strategy Creates Value for Data Providers and Data Consumers
A cloud-first approach to data discovery and evaluation overcomes traditional challenges related to inefficiency, security, and access controls. This model balances privacy, accessibility, and efficiency to benefit both data providers and consumers.
Key benefits for data providers:
- Maintain control by setting access and query rules to define how datasets are evaluated.
- Better visibility into the analysis and utilization of data assets.
- Establish privacy-enhanced environments that reduce security risks while supporting collaboration.
Key benefits for data consumers:
- Accelerate data discovery with a transparent, standardized process.
- Execute custom queries on datasets for deeper feasibility insights.
- Access data in a secure, privacy-preserving environment that supports compliance .
Join the Movement of Cloud-First RWD Strategy
As healthcare data continues to expand, organizations that embrace secure and efficient RWD discovery and evaluation practices will gain a significant competitive advantage. The ability to more rapidly assess data quality, minimize privacy risks, and improve research collaboration will drive innovation and new opportunities for patient care.
Industry leaders like Datavant and AWS are pioneering solutions that transform how organizations discover, access, and evaluate data.
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