Data Generation Sources
Will all data be generated by the institutions involved in the study or will some come from outside parties, e.g., wearables?.
Best Practices:
- Where possible use searchable and indexable formats, such as:
- Json
- Csv
- xlsx/xls
- txt
- Determine whether and how harmonization across different devices and apps for a seemingly common data stream is possible and what work will be required to achieve it.
- Determine data threshold to find signal in the data to be considered statistically significant or meanginful (e.g. power analysis, etc.)?
- Keep the source data. It is important to maintain original data downloaded from device/vendor cloud without any pre-processing so any errors in the processing algorithms can be fixed in the future
Things to Avoid:
- Missing data/metadata (organize your data collection from the beginning to ensure inclusion)
- Using non-standard data formats (e.g. PDF, Word)
Value Set Definitions:
- Yes: At least some data will come from outside sources
- No: All data will be generated by the institutions involved in the study
Value of Use Case Example:
Yes - Wearable device or other type of data stored on some other cloud service (see also existing data); from device to mobile phone app (via Bluetooth) to vendor cloud (via WIFI or cellular network); some devices can communicate with the vendor cloud directly via WiFi or even cellular network (like Apple Watch).
Discussion of Use Case:
Jordan will need to ensure that any cloud-based computing and/or storage resources that she chooses to use will both be capable of handling these outside data sources, and will provide the needed level of privacy and security for these data sources.
See Also:
- Raw Data Repositories
- Clinical Trials and Mobile Technologies: https://feasibility-studies.ctti-clinicaltrials.org/resources
- Platforms for remote assessment
- Radar-base (Remote Assessment of Disease And Relapses): An open source platform to leverage data from wearables and mobile technologies. The main focus of RADAR-base is seamless integration of data streams from various wearables to collect sensor data in real time and store, manage and share the collected data with researchers for retrospective analysis
- Elektra Academy: Free curriculum, resources, and research for organizations considering the incorporation of remote health monitoring.
- Behavior, sensitivity, and power of activation likelihood estimation characterized by massive empirical simulation