Background: Stakeholders across the research and medical communities recognize that data - including clinical, lab, claims and others - provide material advantages for a diverse range of applications including care delivery, research, clinical trials, commercial operations, and new technology development.

This survey focuses on two topics: (a) what healthcare data sources are available today, and (b) the technologies that are used to access them. The objective is to inform researchers about where, and how, to access data for research.

Methods: Data collected for this survey came from database searches and online research of publicly available information about organizations offering, or selling, access to healthcare data. Details regarding the data sources were further investigated with direct interviews with organizations hosting data or their vendors. These data were then aggregated into an independent database that was used for analysis. Government-sponsored databases (eg CMS, FDA, etc.) and academic databases were excluded from this analysis. The scope of the exploration is limited to data in the United States.

Results: 116 databases were identified excluding government and academic databases. These databases were categorized in one of three categories: (1) patient registries, (2) data vendors, and (3) data marketplaces. Seventy-percent (70%) of total organizations were patient registries (n=81). Specialty societies and patient advocacy groups created the majority of patient registries for specific therapeutic areas. Data vendors (n=26) and data marketplaces (n=9) comprised the remaining share of organizations.

Four data interchange models were most commonly used including: (1) direct file transfers, (2) APIs, (3) integration engines or middleware, (4) EHR app stores.

Conclusions: Patient registries continue to be one of the most common sources of healthcare data used for research. Alternative sources from commercial vendors and for-profit marketplaces are readily available. These sources can be accessed with a range of technologies ranging from simple to complex.