Healthcare Organizations Should Not Sell Patient Data without Patient Consent

Every healthcare organization is looking for ways to increase revenues and cut costs in these austere times and may consider the sale of patient data as a way to meet those goals. Though HIPAA requires explicit consent for sale of data, many healthcare facilities have very broad global consents into which such a global consent for sale of data could be inserted. Even if highlighted by a separate signature or initials, many patients feel obligated to sign these broad consents in order not to offend those from whom they desire high-quality care. Sometimes selling patient data does not result in a check, but a cost reduction. If an EHR vendor offers “free” services in return for access to your organization’s patient data, is this ethical? What if the vendor’s intention is to use the data to push pharmaceutical ads disguised as decision support recommendations which might raise organizational costs or even harm the patient?

How should data sharing be managed with business associates? Should the easiest process that meets the needs of the organizations be sufficient or should only the minimum data needed be shared? When sharing data beyond the minimum needed in order for the business associate to meet the terms of the agreement with the covered entity, should de-identified data be shared? If de-identified data sets are to be released to business associates, is the HIPAA standard for de-identification adequate to remove the possibility of identifying a patient, or should more effective techniques be used?

Healthcare Organizations Should Limit Secondary Use of Patient Data to Those Permitted by HIPAA

It is convenient to use HIPAA as a starting point rather than list all of the secondary uses it permits. To complete the exercise, an organization may wish to list each HIPAA-permitted use in a separate principle and evaluate whether to use that principle as written in HIPAA or modify it to better fit the organization. Your organization may determine that some of the secondary uses are ethical in many situations, but not all, and would benefit from some additional restrictions.

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