Connecting Researchers to Patient and Person Generated Data
summary
A six month study called the health data exploration project collects surveys, interviews and public data and reports that 361 individuals and about 100 researchers responded so far Researchers show nearly half have used self-tracking data and most rate donated, curated repositories as useful and not insurmountably problematic Companies express conditional openness but lack R&D bandwidth and fear privacy breaches and current clickthrough consents fail institutional review standards
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chapters (17)
- 0:00Introduction
- 0:39Ecological model of thinking
- 0:54Traditional approaches
- 1:20Changing times
- 2:03Questions for researchers
- 3:10What are we doing
- 3:25Health Data Exploration Project
- 4:17Preliminary Results
- 4:43Sharing Data
- 5:12Data Ownership
- 5:41Privacy
- 6:16Researchers
- 7:00Would this be useful
- 7:22Research data sources
- 7:48Results of companies
- 8:36Informed consent
- 9:52Summary
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