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In addition to providing consumers the tools they need to accurately record their PGDH, ONC should evaluate the reasons why a patient would not provide accurate information in any case.
For example, a patient who has health insurance through an employer, which includes incentives for participating in “wellness programs”, may not be willing to share all relevant health data. They may simply want to benefit from lower premiums used to incentivize participation. However, it may be that employees believe that not participating in “wellness programs” indicates health issues, so they don’t really see themselves having much of a choice.
Patients may also believe, based on evidence easily found online, that their employers can access their PGHD on from the data aggregators… more »
In order to meet jherbert’s challenge to convince patients that they should have no control over their “de-identified” health records, ONC could attempt to convince patients that all the scientific literature on the ease with which de-identified information can be re-identified is fallacious.
Compensating patients who wish to contribute de-identified information to the research community, which is well compensated for their efforts, might prompt some patients to agree to this. ONC could conduct an economic analysis on this approach to determine whether the price that researchers are willing to pay is sufficient for patient participation. However, arguing that patients should have an altruistic interest in furthering research, which isn’t demonstrably altruistic in… more »