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Published: June 2009

Ensure “meaningful use” by giving consumers control

Coalition: Medical Privacy

Consumer Action signed onto a coalition letter to the Health Information Technology Policy Committee, which is tasked with defining how implementation of electronic health records will meet the standard of "meaningful use," such as reducing hospital admission times. The letter asks the Committee to include the ability for patients to control the uses and disclosures of their protected health information in this definition.

Below is an excerpt from the letter:

We envision an ethical health system that reaps the benefits of technology while simultaneously protecting our children and grandchildren from discrimination based on their protected health information. Individuals can best ensure that personal data goes only to the ‘right’ places at the ‘right’ time. With control over PHI, consumers can prevent the most egregious violations of privacy and most destructive uses of our health information, including rampant electronic fraud and identity theft by limiting who can access our records.

The key critical function needed in every EHR to enable "meaningful use" of EHR data is the ability for patients to control the uses and disclosures of all protected health information (PHI). We recommend adopting existing open source technology that enables detailed control over disclosures as a baseline model or floor for consent technologies. The millions of members in our organizations want granular control over disclosures of their electronic health records, analogous to the ethical principles that have long governed our control over disclosures from paper health records.

Accurate and complete information cannot be obtained by force. We know from the California HealthCare Foundation’s National Consumer Health Privacy Survey of November 9, 2005 that 1/8 patients or 12.5% of the population avoids their regular doctor, asks doctors to alter diagnoses, pays privately for a test, or avoids test altogether. If we do not restore patient control over PHI, we can expect electronic health data to have error and omission rates of up to 12.5 %. The breakthroughs and benefits possible with technology‐enhanced research will never be reached with such a high rate of errors and omissions.

The Workgroup recommended 5 policy priorities, with goals and objectives to be achieved between 2011 and 2015, and methods to measure those achievements. The policy priorities are (1) improve quality, safety, efficiency, and reduce health disparities, (2) engage patients and families, (3) improve care coordination, (4) improve population and public health, and (5) ensure adequate privacy and security protections for personal health information.

Our recommendations focus on the Workgroup’s Policy priority (5), because none of the other policy priorities can be achieved unless the public trusts doctors and consumer control over PHI is restored. The Coalition’s key recommendation to ensure “adequate privacy and security protections for personal health information” is to restore consumer control over PHI in electronic health records and systems.

Recommendations:

1) The Coalition for Patient Privacy recommends using the consent requirements in the existing federal regulation 42 CFR Part 2 for the release of information relating to alcohol and substance abuse be used as the policy standard for the release of all protected health information.

2) The Coalition for Patient Privacy recommends using the electronic open source consents developed by the NDIIC that meet the requirements of 42 CFR Part 2 for the release of information relating to alcohol and substance abuse be used as the minimum standard for electronic consent to release of all protected health information.

Lead Organization

Patient Privacy Rights

More Information

American Civil Liberties Union | Electronic Frontier Foundation | Just Health | The Multiracial Activist | The National Coalition of Mental Health Professionals and Consumers | Patient Privacy Rights | Private Citizen, Inc. | United States Bill of Rights Foundation

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