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What's Happening Now

March 29, 2013 7:02 pm

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 »

…associated with the health plan or other sources, e.g., credit reporting entities. Patients may fear that their employers as well as other entities such as workers compensation, disability, and life insurers or their credit card issuers and mortgage lenders may use this information when making decisions about this patient.
There are likely other examples of pragmatic reasons that a patient might not provide accurate information through patient tools or to their providers for incorporation into an EHR. Similar reasons might prompt a patient to pay for services and prescriptions out of pocket to avoid, e.g., data mining of their health information being used for purposes to which they did not consent. (Unfortunately, the logistics for a consumer to exercise this right will likely make it infeasible to exercise – an example of patient “disempowerment”.)
Having outlined the problem, here’s the requested action item: ONC should find mechanisms to ensure that PGHD will be used appropriately, and with patient knowledge, authorization, and consent as required by law. « less
March 30, 2013 1:32 am

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 »

…its contributions to improving overall health of their communities, may be a “hard sale”.
Unfortunately, in many cases, even getting on the candidate list for a clinical trial, which may not even exist yet, a patient has to agree to disclose all health information (no guarantees of de-identification) into the future to all entities involved in the research community in which a current (or future) clinical trial is being conducted.
So the question of how to convince patients that they don’t own their de-identified health information may be moot due to the research community’s “contract of adhesion” approach to forcing authorized disclosure of the patient’s health information. Interesting that this approach is similar to that used by insurers who are not governed by HIPAA. « less
March 30, 2013 12:13 pm

Welcome to Planning Room, curious and thank you for your comment. Ensuring that consumers have adequate access to, and control of, their health information is an important goal of the ONC.

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