To assess and compare the level of understanding, engagement and satisfaction in patients who received pharmacogenetic results and are randomized to 1) a web-based portal with personalized educational content tailored to subject's results or 2)standard of care. Subjects will be surveyed to determine 1) understanding 2) engagement and 3) satisfaction.
Showing 3 ideas for tag "engagement"
The All of Us Research Project's success depends on public trust, active participant involvement, and long-term support from all stakeholders. All of Us should support ethics and qualitative research on questions related to participant engagement and incentives such as: What constitute ethically appropriate incentives? How can All of Us encourage participation of less engaged groups and individuals to ensure that the... more »
In Power to the People:Data Citizens in Age of Precision Medicine "solution[s] may lie in embracing broader concept of autonomy empowers individuals to protect their interests by exercising meaningful rights of data citizenship". Using distributed ledger technology (a public or private) provides advanced privacy&security measures that data warehouses, gatekeepers of citizens' genetic/genomic data, etc. would be remiss... more »