ONC Developing Online Project To Educate Consumers About PHRs

Government Health IT reports that the the Office of the National Coordinator (ONC) is developing an online model containing information for consumers about personal health records (PHRs) and the privacy policies related to their use. ONC's effort appears targeted at engaging consumer to make more informed decisions about the use of PHRs.

The Office of the Secretary for HHS issued a notice of Agency Information Collection Request and 30 day Comment Request, 74 Federal Register 24012 (May 22, 2009), providing details of the proposed project.

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The abstract in the Federal Register notice states:

A new health information technology, the personal health record (PHR), seeks to provide consumers with the capability to directly manage their own health information. Although PHRs can exist in different formats or media (i.e., paper or electronic), the term usually refers to an online record containing an individual’s personal health information. PHRs typically include information such as health history, vaccinations, allergies, test results, and prescription information. Given the newness of the electronic PHR concept, the different ways to establish PHRs, and the sensitivity of personal health information, ONC is taking steps to establish that useful facts about PHRs and PHR privacy policy information be made available to consumers so they can make informed decisions about selecting and using PHRs. Toward this end, ONC has a project to develop an online model for PHR providers.

The model will be developed to:

› Allow presentation of important PHR facts and policies to consumers,

› Allow consumers to understand and consistently compare PHR service provider policies with others, and

› Focus on the key information that may influence decisions and choices of PHR service provider.

The project includes iterative rounds of in-depth consumer testing during April–October 2009 to assess and analyze consumer understanding and input about the model. The model will be iteratively revised to design a final template that will allow PHR vendors to convey useful and understandable facts to consumers about their privacy, security, and information management policies. Testing will be conducted in six locations that cover the four geographic census regions and will include 90-minute, one-on-one, cognitive usability interviews with six to seven participants at each of six sites, for a total not to exceed 42 interviews. In addition, each participant will have been recruited through a 15-minute screening interview. The participants will be recruited according to U.S. census statistics for race/ethnicity, age, marital status, gender, and income. Also, the sample will include participants both familiar and unfamiliar with PHRs and participants who manage chronic health issues or a disease for themselves or others.