Anonymous record contribution

For such purpose one might consider an ARC, that is, archive of anonymous record contributions. Such an archive would essentially mirror contributed records, except for being anonymized (see the next chapter). However, fairly sophisticated software would need to be used to serve as gatekeeper between the identified and anonymized archives. Moreover such sophistication will need to extend to police the gates between the ARC and the researchers so that no researcher opens a means of threading back to identify the patient. That is, unless a patient required that he or she be warned of freshly identified medical risks, a process that itself can involve complex security so that outsiders cannot intervene in or reproduce the tracking back mechanism. 

Surprisingly, HIPAA rule permits a covered entity (a person) to have access to health information for research purposes, without obtaining an authorization or documentation of a waiver or an alteration of authorization, to use and disclose PHI included in a limited data set. A covered entity may use and disclose a limited data set for research activities conducted by the covered entity itself, another covered entity, or a researcher who is not a covered entity if the disclosing covered entity and the limited data set recipient enter into a data use agreement. Limited data sets may be used or disclosed only for purposes of research, public health, or healthcare operations. Should the patient find this objectionable, it may be possible to formulate reform such that a patient still contribute anonymized records to an archive of Anonymous Record Contributions (see Chapter 5) ... 

But participants at this conference contributed many valuable observations while discussing specific points. Unfortunately, more often than not, it proved impossible to identify them in the records. Accordingly, we incorporated here and there some of these "anonymous" contributions as part of the edited version of the texts. 

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