NPAF draws attention on need to ensure patients' right to privacy in Virginia's HIE

NPAF Delivers letter to Chair of Virginia's Health Information Technology Advisory Commission

The National Patient Advocate Foundation (NPAF) – a national, non-profit organization dedicated to the mission of creating avenues of improved patient access to health care through public policy reform at the state and federal levels – delivered a letter to Dr. William Hazel Jr., M.D., Secretary of Health and Human Resources and Chair of Virginia Governor's Health Information Technology Advisory Commission (HITAC), bringing attention to the need to ensure patients' right to privacy in the state's health information exchange (HIE).  Virginia has been involved in the development and implementation of a comprehensive plan for Health Information Technology since 2005, when Governor Mark Warner established a dedicated task force for the issue. HITAC consists of a broad range of stakeholders including physicians, HIE and privacy experts, hospital and insurance executives and patient advocates who are interested in health information technology and exchange.

"While NPAF supports the rapid deployment of health information technology (HIT) and applauds the HITAC's initiatives to expand HIT use, we want to ensure that patient concerns regarding privacy and security safeguards are addressed in the development of HIT policy, standards and innovations," said Nancy Davenport-Ennis, CEO & Founder, NPAF. "NPAF firmly believes that patients must have the right to control their medical information in every health care setting, and in this instance, we found it important to speak out on patients' behalf."

The NPAF letter expresses concern that the "opt-in" patient participation model of HIE, in an all-or-nothing approach, restricts a patient's fundamental right to withhold information from their personal medical record if they so choose. Patients who are given the "all in or all out" ultimatum when asked to consent to Virginia's HIE are more likely to be discouraged from participation and may simply opt-out. NPAF recognizes that the "opt-in" model at the participating organization level reduces administrative burden and when patients choose to opt-in, assures a certain continuity of data. However, adopting a state HIE which requires a model that would lead to decreased patient participation is at odds with the goals of health information technology, degrading its usefulness and reducing patient control of data.

NPAF supports the "opt-in with restrictions" patient participation model, which allows patients to make all or a defined set of data available for exchange. This model assures that patients who may not want sensitive data included in their medical record still have the ability to participate in Virginia's health information exchange (HIE).

The NPAF letter states that HIE must be structured to serve the best interests of patients. Some patients fear that electronic medical records containing certain personal, sensitive medical information may compromise their employment, borrowing ability and health and life insurance. Allowing patients to prohibit the inclusion of personal, sensitive medical information in their medical record relieves these concerns and encourages greater participation in the exchange.

NPAF and its companion organization, the Patient Advocate Foundation (PAF), were founded on the principle that health care is a basic human need and shared social responsibility. NPAF is dedicated to working with Congress and all levels of government to overcome challenges and create solutions that will allow for progressive, modern, and effective health care for all. PAF directly assists patients with chronic and life-threatening conditions who are struggling with access to care issues.  Last year, PAF received more than 4 million contacts requesting information on-line with complete case management mediation and arbitration services provided to 55,384 patients confronting issues denying access to sustained health care for their diagnosis of chronic, life-threatening and debilitating conditions.