Collaborative Response to the U.S. Department of Health and Human Services RFI: Voluntary Storage of Personal Data in Preparation for Emergencies | Markle | Advancing America's Future

Collaborative Response to the U.S. Department of Health and Human Services RFI: Voluntary Storage of Personal Data in Preparation for Emergencies

Publication Date: July 24, 2006


Markle Connecting for Health, a public-private collaborative group whose goal is to advance health information technology in the public interest, is pleased to offer the following response to the U.S. Department of Health and Human Services’s (HHS) request for information1 (RFI) issued on May 23, 2006. We limit the scope of this response to personal health information. We therefore exclude other types of personal information such as wills or birth certificates, which fall outside the domain of our work.

In sum, we applaud the department’s recognition of the importance of having access to electronic records in the case of an emergency. However, we suggest that HHS broaden the scope beyond mass disasters to include individual health emergencies as well as chronic care and self-management.

We have very modest expectations for an approach that relies solely on consumers to store their own health information for emergency retrieval. It is appropriate for the federal government to encourage people to maintain, backup and protect key information virtually. Clearly, Americans can be more personally responsible and better prepared. However, even the most effective government efforts to encourage this behavior will inevitably fail to motivate a very large percentage of the population. Vulnerable populations (i.e., the older, sicker, poorer, uninsured, non-English speaking, etc.) are particularly difficult to reach and will require focused attention from HHS and others.

We discourage the creation of a new “centralized information silo” that will likely be out of date and unfamiliar to health care providers when the next disaster strikes. Instead we urge HHS to coordinate all health IT efforts within a vision of a decentralized nationwide health information network (NHIN).

A variety of solutions will likely be necessary to support the availability of essential health information in an emergency (as opposed to a single, centralized, nationwide database.) HHS should prioritize near-term emergency-preparedness work on achieving minimum consensus on identification, authentication and authorization practices for a wide range of health professionals. We encourage incorporation of the lessons from the KatrinaHealth experience in HHS planning. We believe the government has an important role to help educate and remind all custodians of critical health information to maintain adequate data backup and recovery procedures, as well as consider mechanisms for small, rural, and safety-net organizations and regions to sustain this critical and ongoing effort.

Finally, we feel that HHS should play a significant role to facilitate a collaborative, transparent process to develop electronic health data sharing policies that earn the public’s trust.

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