Patient Privacy Rights Calls for Patient Control Over Data Exchange on the Nationwide Health Information Network (NwHIN)

In our comments about the NwHIN, Patient Privacy Rights (PPR) urged the Office of the National Coordinator for Health IT (ONC) to use this critical opportunity to address the fatal privacy and security flaws in current systems and state and federal data exchanges. “Multi-stakeholder” public-private governance at the state and federal level has failed to gain public trust.  Public-private governance assures that industry, research, and government interests trump the public’s rights to health information privacy.

To restore public trust, PPR strongly believes:

  • All state and federal data exchanges should be certified to assure that patients control the exchange of their health data. Privacy certification should be designed by a non-profit, patient-led organization with expertise in health privacy;
  • Data should only be exchanged using the Direct Project for secure email between patients, physicians, and other health professionals (with rare exceptions);
  • Patients should always give meaningful informed consent before their information is disclosed; and
  • Sensitive personal health information should only flow to those directly involved in an individual’s treatment, or to those who are conducting research in which an individual has agreed to participate.

Without a network designed to make sure individuals decide who sees their health records, Americans will grow even more wary of seeking needed treatment. We urge the ONC to act now to create a nationwide network that requires comprehensive data privacy and security measures to protect patients’ intimate personal health data. See comments here.

Proposed Rules Prevent Patient Control Over Sensitive Information in Electronic Health Records (EHRs)

The proposed federal rules will require physicians and hospitals to use Electronic Health Records (EHRs) that prevent patient control over who can see and use sensitive personal health information.

This is the second time the federal government has proposed the use of technology that violates Americans’ strong rights to control the use and sale of their most sensitive personal information, from DNA to prescription records to diagnoses.

The proposed rules require EHRs to be able to show “meaningful use” (MU) and exchange of personal health data. PPR and other consumer and privacy advocacy groups submitted similar comments for the Stage 1 MU rules. These newly proposed rules are known as “Stage 2 MU” requirements for EHRs.

The most important function patients expect from electronic health systems is the power to control who can see and use their most sensitive personal information. Technologies that empower patients to decide who can see and use selected parts of their records have been working for 4 million people for over 10 years in 8 states with mental illness or addiction diagnoses. Today we do not have any way to know where our data flows, or who is using and selling it.

Even if we had a ‘chain of custody’ to prove who saw, used, or sold our personal health data—which we do not—it is still essential to restore patient control over personal health data so we can trust electronic health systems.

Technologies that require patient consent before data flows are cheap, effective, and should be required in all EHRs.

See Patient Privacy Rights’ formal comments on the Stage 2 MU proposed requirements submitted to the Centers for Medicare and Medicaid and the Office of the National Coordinator for Health IT at: http://patientprivacyrights.org/wp-content/uploads/2012/05/PPR-Comments-for-Stage-2MU-5-7-12.pdf