Prepared Comments for the National Committee on Vital and Health Statistics (NCVHS)
Subcommittee on Privacy and Confidentiality

Prepared by Keith Tayloe, President, Portal Dynamics, Inc.

Good afternoon. I am Keith Tayloe, President of Portal Dynamics. Thank you for the opportunity to address the subcommittee today on the topic of third party disclosure of health information. My comments today do not represent a specific position of Portal Dynamics. Rather my comments represent the convergence of more than two decades of experience providing IT solutions to government organizations and for-profit entities with my experience buying and administering healthcare benefits for employees; with my experience implementing healthcare legislation for the Federal government; with my experience as a doctoral student pursuing the future of computing; and my personal experiences as a healthcare consumer and care-giver.

Throughout my comments I will refer to the phrase “personal health information”. I use this phrase – personal health information – to refer to any and all data about the past, present, or future physical or mental health of an individual.

Any discussion or comment on third party disclosure of health information needs to have context. In today’s post-HIPAA world, personal health information is owned and controlled by healthcare providers by default though HIPAA provides the recognition that consumers have an ownership stake in their personal healthcare information. In this bilateral context a discussion of when and how personal health information can be disclosed to a third party for any purpose is germane.

However, I believe that current and future discussions of third party disclosure need to be focused in a different context, one that is the current and future reality – where consumers exercise ownership responsibility for their personal health information and any question of disclosure is a two-party question, not a three party question. The Framework for Strategic Action formulated by HHS in response to the President’s April 2004 Executive Order promotes a vision of a consumer-centered and information rich healthcare industry. Engaging the consumer is increasingly positioned as a fix for a healthcare system in need of repair. Unfortunately, consumer-driven healthcare will only be a panacea unless the consumer is allowed to drive.

Engaging the consumer as the catalyst to improve the quality and efficiency of healthcare requires the simple recognition that the consumer is the owner of and controller of their personal health information. HIPAA implies as much and there is nascent agreement across a broad population of individuals and organizations that the consumer owns their personal health information. The CONFIDENTIALITY, ETHICS, PRIVACY, and ACCESS Breakout Group at the 2004 National Health Information Infrastructure Conference recommended that a regulation be established that will “Assign ownership of the Electronic Health Record to the consumer…” I salute this group’s intent and suggest that the wording should be changed to read “Acknowledge ownership of the Electronic Health Record by the consumer…”

What I am suggesting today is more than a token declaration acknowledging that ownership of personal health information rests with the consumer. I am suggesting that consumers initiate and maintain their own Electronic Health Record based on Government and healthcare industry standards. This consumer-managed Electronic Health Record provides a summary picture of the past, present, and future physical and mental health of the consumer; and it provides the pointer to the detailed records that reside with the individual healthcare providers. When a consumer seeks healthcare services, they grant access to or unlock their Electronic Health Record at the time of service. Consumers can choose to support studies or other requests for healthcare information by making information available from their Electronic Health Record without including identifying information. This keeps the consumer in complete control of their personal healthcare information. With consumer-managed Electronic Health Records the question of disclosure is a direct, addressable question.

There are many potential objections to putting Electronic Health Records in the hands of the consumers. Many of these potential objections stem from current mental models that promote “assigning ownership” versus “acknowledging ownership”. Other potential objections stem from misconceptions that a vast national infrastructure is needed to store and forward healthcare information. Technically, there are no barriers to putting Electronic Health Records in the hands of the consumer. Advances in peer-to-peer computing that do not require servers or central administration and leverage the current Internet infrastructure can support this approach to consumer-centered healthcare today. Practically speaking, consumers do not need a vast national infrastructure to begin managing their personal health information.

Putting Electronic Health Records in the hands of consumers is not a silver bullet that will improve the quality and efficiency of healthcare overnight. Putting Electronic Health Records in the hands of the consumers will begin to improve the quality and efficiency of healthcare tomorrow. More importantly, it will unleash the inherent innovation in the marketplace and force the healthcare industry to be responsive. The lessons of the Internet provide the best testimony to the potential of the consumer. We can now place our own orders, track shipments, book travel arrangements, get home loans, and manage our stock portfolios when and where we want to thanks to consumer demand and marketplace innovations. Within the healthcare industry, the pharmaceutical industry offers two strong testimonials about the power of the consumer to influence. First, pharmaceutical companies clearly believe consumers can and will influence their doctors as demonstrated by the unending barrage of drug commercials that dominate television advertising. Second, every bus load of senior citizens heading to a Canadian pharmacy is a bus load of consumers driving healthcare.

In closing I recommend that the topic of third party disclosure be deferred to the consumer. Let consumer demand drive the quality and efficiency of healthcare by letting the consumer drive their Electronic Health Records. Let the consumer decide whether or not personal healthcare information should be disclosed. Let the consumer decide the terms for that disclosure. Consumer managed Electronic Health Records will provide more information. More information will lead to better diagnoses, better decisions, and fewer errors. Thank you.