Draft Model Personal Health Record (PHR) Privacy Notice & Facts-At-A-Glance

Background

In June 2008, the Department of Health and Human Services (HHS) began a multi-phase and iterative research project to develop, using research and consumer testing, a model for presenting easy-to-understand information about personal health records (PHRs) to consumers. The draft model PHR privacy notice, including the draft Facts-At-A-Glance, below represents the beginning of Phase 2 (out of 3) of this project, and is being made public to offer stakeholders an early opportunity to comment. Details about public comment will be released in the near future.

Project Purpose

The project purpose is to develop a “plain language” model PHR fact sheet that will enable consumers to clearly understand and compare privacy policies across PHRs. The final product is envisioned to be a template for a web-based PHR fact sheet for vendors to use to deliver complex PHR privacy and security information simply and clearly so that consumers can make informed decisions, similar to the nutrition label that provides a format for consumers to quickly learn nutritional information about a food or the financial services industry model privacy notice that dictates how the financial institutions inform consumers about financial privacy information practices.

Project Approach

The project is scheduled to be completed in three phases. Phase 1, work done from the beginning of the project up to this point, included conversations with Federal experts in this area, an in-depth analysis of relevant background materials (consumer communication literature, actual PHR privacy policies, and other published analyses) and a limited round of consumer testing. Phase 2, will include opportunities for public comment. Input from stakeholders in the public and private sectors, consumers, and communication specialists will be sought and incorporated into the design process of the model PHR fact sheet. Using the input gathered during Phases 1-2, Phase 3 will occur in 2009 and focus on iterative rounds of in-depth consumer testing to assess and analyze consumer understanding and input. Also, input gathered from Federal stakeholders will continue to inform Phase 3. The project is scheduled to be completed with a final template for use in December 2009.

• To view a draft blank model notice template click here: Blank Template
• To view a draft completed model notice of a fictional company called Birch Health click here: Birch Health Model Notice