Taking Personal Health Records to a New Level; Establishing a Platform for Allowing for Consumer Control of Interoperable Health Care Information

Thomas Milton Jones* Thomas Milton Jones*, Tolven, Sonoma, United States
Lon Newman, Family Planning Health Services, Wasau, United States

Track: Practice
Presentation Topic: Personal health records and Patient portals
Presentation Type: Oral presentation
Submission Type: Single Presentation

Building: LKSC Conference Center Stanford
Room: Lower Auditorium 130
Date: 2011-09-18 01:00 PM – 02:30 PM
Last modified: 2011-08-12

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The Personal Health Record should be the hub for exchange of health care information among all of the actors (physicians, allied health care personnel, research personnel, families and the consumers themselves) engaged in a consumer’s health care. Making the PHR the hub rather than treating the PHR as a node on a provider-centered system of systems (such as can be seen in “tethered” PHR solutions) solves knotty issues surrounding patient consent and consumer control of health information exchange. We will describe how effective use of and development of open source software has created an infrastructure for empowering consumers and for securely separating consumer health care information from other information networks (including social networks) wherein consumer privacy can be compromised.
Effective development and deployment of Personal Health Records (PHRs) have the power to reduce the tension between advocates of federated and consolidated electronic health records (EHRs). The widespread fear of national health information data bases has driven many to espouse federated “shareable” EHR systems in which health information is kept in source systems and can then be assembled through a series of queries for viewing by duly authorized users. Each “view”, of course, necessitates a new assembly. While this approach certainly does not create a national health information data base, it also has many performance and logistical problems that contribute to sluggish adoption.
In contrast, the consolidated model involves creating the shareable EHR in near real time by updating from the source systems to the lifetime EHR. While this model is thought to have a better price to performance ratio, simpler access control, and heightened security, the specter of a national health information data base has knee-capped its adoption. The use of PHRs to consolidate health care information is an appropriate model to reconcile the tension between these two approaches.
In 2006, the National Committee on Vital and Health Statistics (NCVHS – USA) focused its attention on Personal Health Records and concluded that “The greatest opportunities for improving health and health care lie in enabling information exchange between the three dimensions (Healthcare Provider, Personal Health, and Population Health) of the national health information infrastructure.” The NCVHS concluded that “The full potential of PHR systems will not be realized until they are capable of widespread exchange of information with EHRs and other sources of personal and other health data.” Because the Tolven PHR has been developed on the same open source platform (and utilizing the same information model, standard vocabularies, and data types) as the Tolven EMR and the Tolven Clinical Research applications, interoperability of data exchanged between all three dimensions is greatly enhanced. The Tolven platform is now serving as a secure infrastructure for health information exchange in the Netherlands, the United Kingdom, and the United States and is being implemented in Singapore. By placing the consumer at the hub of health information exchange, consumers can be more confident that health information is shared only when appropriate and only with whom the consumer designates. Through the creation of secure accounts for consumers and for health care providers, Tolven has created a model for avoiding collisions between networks with competing interests. The Tolven PHR consolidates health information for the consumer while side-stepping the pitfalls of a national health care information database.
Our current experience has shown that patients are motivated to use PHRs that assure privacy and consumer control of information flow and that provide the ability to send and receive personal health information to and from their providers. We believe that PHR use will be accelerated by including such functionality as secure messaging between patients and providers and availability of appointment scheduling options.

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