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Data Collection Principles of NAMI MD

The following principles of NAMI Maryland address privacy and confidentiality issues with regard to data collection for the Maryland medical care database by any entities concerned with mental illness/neurological brain disorders. These principles will guide us as we adopt positions on state and federal legislation and as we review and recommend regulations or regulation changes to existing laws.

Principle #1:

We believe that providing management information for use in public policy decisions concerning health is important, but this should only be done with proper safeguards in place to protect privacy and confidentiality.

Principle #2:

Entities responsible for collecting data and keeping it secure should have accountability including appropriate consequences for any violations or breaches of privacy and confidentiality which occur with the data or use of the data. The laws pertaining to data collection of this nature should include provisions for blanket prohibition for use of the data other than its original intended purpose and a review process should be put in place if there is proposed use of the data other than its original intended purpose.

 

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