04.Data collection07.Patient data donation - sporedata/researchdesigneR GitHub Wiki
- Allows for patients to participate in the process of data collection, often by providing biospeciments (saliva, blood, etc) along with PROMs
- Infrastructure to add value to patients every time they donate data.
- Ability to personalize information on Quality of Life as a mechanism to reward patients for their data.
- For hospital-based data, the willingness of clinicians and hospitals to participate.
- Variability of Brain Death Policies in the United States [1].
- Collection of self-report information.
- Biosample collection: saliva, blood, feces (bioma).
The following R packages are available:
- Data collection through chatbots.
- n-of-1 randomized trials.
- Mixed methods.
- Books *
- Articles *
- Sites
[1] Greer DM, Wang HH, Robinson JD, Varelas PN, Henderson GV, Wijdicks EF. Variability of brain death policies in the United States. JAMA neurology. 2016 Feb 1;73(2):213-8.