Request for Information: Real World Data Sources for Health and Health Care Research (Closed)

The Advanced Research Projects Agency for Health (ARPA-H) is conducting market research for potential procurements for real world health care data and related services. ARPA-H has a need for real world data (RWD) both to inform strategic direction, as well as on an ad-hoc basis in support of individual mission offices and their research and development programs.  

View the full Request for Information: ARPA-H Real World Data Sources for Health and Healthcare Research. 

Given the fragmented nature of available data sets, ARPA-H may have analytical needs surrounding the curation and integration of data sets. The Agency seeks technologies that can be used to link records for individuals using privacy preserving record linkage techniques (PPRL) across all data sets. 

Additionally, ARPA-H is exploring potential models by which integrated data sets could be made available to the broader research community, complying with relevant privacy and ethics agreements while also lowering the barriers to access for the data. This RFI invites respondents to identify potential economic models, limitations, and potential restrictions in this topic area. 

The RFI explores three inter-related areas of need: 

Need Area #1: Real World Health care Data 

To fulfill the mission of ARPA-H to accelerate better health outcomes for everyone, the agency wishes to establish a repository of RWD related to the health and health care of the United States population including but not limited to: 

• Electronic Health Records (EHR) 
• Public and private payer claims  
• Prescription claims 
• Diagnostic testing 
• Social Determinants of Health (SDOH) 
• Socioeconomic factors, such as housing insecurity, financial insecurity, psychological pressures, discrimination, etc. 
• Geolocated environmental factors and associated data 
• Pollutants, climate, wastewater testing, toxicology, etc. 

Need Area #2: Data Curation and Integration 

In obtaining a significant amount of potentially disparate data, ARPA-H seeks solutions to ensure that data can be federated and integrated for maximum utility including linkage of individuals across data sets using privacy preserving record linkage (PPRL) methods. 

Given that bringing this data together would almost certainly require federated models we are seeking input on design patterns such as the Trusted Research Environment (TRE), patterns where the control of data remains with the providers, or more sophisticated methods such as performant homomorphic encryption and secure multi-party computation. 

Need Area #3: Real World Data as a “Public Utility” 

One potential goal for the agency is to make such a federated data resource available to the research community as a “public utility.” The agency is seeking industry input on the potential economic models that might support such a public utility model, enabling research by lowering barriers to data access while fairly compensating vendors for their investments. 

The agency is also interested in understanding potential limits on data usage as it pertains to privacy, intellectual property, and data rights concerns, as well as mitigation strategies addressing these concerns. 

Vendors are requested to submit their response to the RFI no later than 4:00 PM ET on August 23, 2024. Send responses to Acquisitions@ARPA-H.GOV.