Description
Precision Health initiatives will require research that not only uses a person’s clinical and genomic data, but their mobile health (mHealth) data as well. This app leverages HealthKit and integrates with the Health app to help Precision Health organizations build a standardized Precision Health mHealth database for Alzheimer’s disease and dementia research. It is a simple utility that lets people choose baseline Health app data they wish to share, creates standardized (OMOP CDM v5.0) files that Precision Health researchers can understand, and allows them to email their donation to any Precision Health Alzheimer’s disease project of their choosing. Before sharing data, users will be prompted to grant access to specific HealthKit fields relevant for Alzheimer’s disease and dementia research (sex, age, vitals, results, body measurements, etc).
Our app does not store, collect, or perform any analysis of your data. It is a mobile health adoption of the Observational Medical Outcomes Partnership (OMOP) Common Data Model (CDM) Version 5.0, an open source health informatics standard widely used by industry, government, and academic organizations (http://omop.org) with potential applications to Precision Medicine research initiatives.
The app can be used to donate HealthKit data to eligible downstream organizations interested/capable of creating Precision Health mHealth databases, and who are thus also responsible for describing study design (e.g. duration range: 2 weeks to 2+ years), potential risks (unintended data disclosures) and benefits (scientific knowledge advancement), confidentiality/handling of data (study data standardization/encoding), and the withdrawal process of user data (electronic request/notification).