Testimony from George R. Flores

George R. Flores, MD, MPH

Health Officer and Public Health Director,
Sonoma County Department of Health Services

3313 Chanate Road, Santa Rosa, California 95404-1744
Phone: (707) 576-4742 Fax: (707) 573-5151

Good morning, members of the National Committee on Vital and Health Statistics. Thank you for the opportunity to testify today on privacy, confidentiality, data standards and issues in regard to Public Law 104-191. I appear before you today not representing the County of Sonoma, but rather as President of the Health Officers Assocation of California, and on my own behalf as a public health professional.

The focus of my testimony is on the issues of privacy and confidentiality, from a California and public health perspective. Privacy and confidentiality are critical elements of public health practice. Any standards to exchange information electronically must protect privacy and confidentiality to the same degree that occurs in non-electronic systems.

Public health holds an unique position, in access to and the need to work with sensitive client information. In order to be able to make contact with persons having contagious conditions, and to have the cooperation and trust of their medical providers, the door to public health must be open to all categories of individuals, including those who may be disadvantaged by disclosure of their identity. For the door to be open, their must be public confidence in the privacy and security of medical information. This holds true for medical as well as mental health clients, their medical records, and in many cases, their identities.

California's immigrant population, both legal and undocumented, number in the millions of people. When Proposition 187 was passed in 1994 clinic attendance dropped precipitously across the state. Studies undertaken by researchers at the University of California at San Francisco, the California Conference of Local Health Officers, and others, have shown that many immigrants and non-immigrants chose to stay away from essential medical services rather than engage in an encounter which they believed would put themselves, a family member, or a friend, in a position in which they would be interrogated about their immigration status. Many believed that jeopardy to immigration status would result if such information were made accessible to immigration authorities purported by Proposition 187. Consequently, hundreds of persons with tuberculosis, pregnancy, terminal diseases and other contagious or life-threatening conditions failed to get care. This deterrence to care posed by concerns over privacy and security of medical encounter information, not only jeopardized individual health, but put at risk the health of the general population. Those with untreated contagious disease continued to circulate in our communities. Those with severe conditions became more ill and eventually ended up in emergency rooms and hospitals, impacting access to those facilities, as well as costing more for treatment.

Immigrant concerns over privacy and confidentiality are a real and daily presence in medical practice in California. These concerns not only apply to individuals, but also to citizen households in which some members may not have adequate documentation of immigration. In most cases, these are hard-working well-meaning people who are simply looking out for health and well being of their family members. Immigrants also have concerns about identity security in other ways, such as employment repercussions from mistaken identity, erroneous presumption of illegal status, or political retaliation for activities/affiliations in a home country.

The social consequences and concerns, and consequent behavior of persons with disfavored public status is not limited to immigrants. Persons with HIV are similarly at risk. Problems, real and potential, are well-known and documented. Misuse of medical record information, specificallly personal identifiers, has lead to insurance red-lining, exclusion from employment and housing, and other public embarrassment. One of the big losers when supposedly protected HIV status information is leaked is public trust and confidence in the system. Here in California, there are laws against such a thing, but it still happens.

We in local public health agencies take seriously the duty to protect the privacy and confidentiality of medical information. We receive confidential reports of persons with sensitive diseases and conditions from many sources. We work to protect the advantages to public health from shared patient information. Epidemiologic analysis, program design, policy development, outcome measurement, population health research, immunization registries, service-targeting such as the Family Health Outcomes Project, and our statewide birth records system, are all examples of how shared information systems serve the public health.

There are also distinct disadvantages to the individual as well as to public health. Most notably, intrusion by unauthorized agencies or individuals who would use linked data systems for their own non-medical purposes must be prohibited and prevented. Although society also has an interest in preventing system abuse, doing research, and facilitating enterprise, it is essential to balance the risk of losing public trust and confidence with the perceived benefit of shared information, which could fall into the wrong hands.

I am from local public health where the rubber meets the road. We are the arm of government which sees and treats people on a daily basis. Each of our clients needs to feel trust and security in our eyes and in our actions across a registration desk, or in an exam room. Otherwise, they will not come, to their disadvantage and to ours. We have the sometimes unenviable task of balancing diversity in personal values and ethics in our own workforce and that interaction. Where some of our staff would be only too willing to share information with the INS, other staff would rather defy law or quit their jobs than to refuse service to a person because of their legal status or reveal the status of a person with HIV, alcoholism or any other condition from which public disclosure could cause personal disadvantage. You must consider this: system standards cannot stand on their own; the workforce must believe in, support, and promulgate them.

As the local arm of government, too, we are in an advantageous position to oversee local shared information systems both in their use and misuse. Local oversight seems to be a missing factor in many research protocols, data collection system standards, and processes for linked systems. A number of community health information networks are emerging in California, and roles for local oversight by public health are evolving. Local public health jurisdictions are in the perfect position to oversee and assure privacy and confidentiality in shared information systems.

In closing, the recommendations I wish to leave you with are as follows: Do all that is possible to assure fail-safe confidentiality and security in shared information systems. I encourage this committee to promote to the public statements detailing the lengths to which security and confidentiality will be protected. Clearly define the controls on access for research, and for which purposes research using shared information systems would be done and by whom, with a role for local oversight in each. Consideration must also be given to unlinking or otherwise masking immigration status, so that personal jeopardy, or class discrimination does not occur.

I leave you with the age-old adage accorded to medical students upon graduation: "First do no harm." This exhortation is also highly appropriate to implementing standards for linked data systems. I encourage you to be fair, be reasonable, and to be humane.