LUNA - sporedata/researchdesigneR GitHub Wiki
Luna is a platform developed, owned, and managed by the public benefit company LunaPBC, aimed at facilitating data sharing between individuals and researchers. Ownership in Luna is granted to its members based on the types and volume of health data they share for research purposes. All shares in Luna are held by members who contribute their data, and these shareholders receive dividends (cash distributions) proportional to the number of shares they own, derived from profits generated through research conducted on the platform.
The founders of Luna aimed to promote the sharing of health data by ensuring privacy protection, establishing a new model for consumer data transparency and oversight, simplifying the data contribution process for individuals, allowing users to retain control over their shared data, and maximizing data accessibility for the research community. Luna emphasizes participant control over data usage and is committed to strict privacy and security standards, adhering to regulations such as GDPR and CCPA.
Luna provides a platform-as-a-service model that reduces the need to recreate infrastructure for data management and sharing. The platform is designed to ingest and manage numerous types and formats of data, enabled by application programming interfaces (APIs), which facilitate integration and interoperability between different applications.
When utilizing Luna for research, it is essential to comply with GDPR and CCPA principles to ensure data privacy and security. Researchers must have IRB approval or the equivalent outside North America before accessing the data. All data analysis is performed within a secure computational workbench within the Luna platform to maintain a member’s control over their shared data. Researchers are also required to accept the terms of use and associated policies, which function as a contract between data contributors and those accessing the data.
Maintaining the integrity and quality of data is critical. Automated quality assurance protocols are built into the process of data ingestion and submission, tailored to the type of data (e.g., genomic, survey, registry data). These protocols help ensure that data are reliable and suitable for research purposes.
Luna's platform is used in various research projects, including:
- Genomic Studies: Research on genetic predispositions to diseases using DNA files from direct-to-consumer companies.
- Patient-Reported Outcomes: Studies utilizing Luna-generated health surveys and validated survey instruments.
- Activity and Fitness Tracking: Research using data from fitness/activity trackers and smart devices.
- Electronic Health Records (EHR): Continuous data flow from EHRs through patient portal integrations for health studies.
The datasets on Luna include a broad range of variables such as:
- Survey Data: Patient-reported outcomes from health surveys.
- Genetic Data: DNA files from 23andMe, Ancestry.com, and other DNA companies.
- Clinical Data: Information from electronic health records (EHRs).
- Activity Data: Data from fitness trackers, smart devices, and medical devices.
- Data Integration: Combining different data types can be challenging due to varying formats and standards.
- Privacy Concerns: Ensuring the privacy and security of personal health data is a primary concern, requiring strict adherence to GDPR and CCPA principles.
- Data Completeness: The types of data available for sharing are dynamic and evolving, which may affect the completeness of datasets.
- Access Restrictions: Researchers must have IRB approval and comply with data use agreements.
- Sharing Health Data: The Why, the Will, and the Way Forward
- The human face of ABCC6
- Privacy and Genetic Testing
- The application of artificial intelligence in the diagnosis of cancer and rare genetic diseases
Researchers affiliated with academic institutions or pharmaceutical companies can access Luna’s datasets by adhering to institutional data use agreements and protocols. In order to collaborate with Luna, one must normally get IRB approval, accept the conditions of usage, and submit to an internal evaluation by LunaPBC staff.
Researchers interested in using the Luna platform must initiate collaboration through direct outreach to LunaPBC or an online inquiry link. After obtaining IRB approval and completing the necessary review process, researchers can access the data within a secure computational workbench on the platform.
[1] Grossmann C, Chua PS, Ahmed M, Greene SM. Sharing Health Data: The Why, the Will, and the Way Forward. 2023.
[2] Grossmann C, Chua PS, Ahmed M, Greene SM. CASE STUDY: Luna - Sharing Health Data. National Academies Press (US). 2022.