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HHS Unveils Personal Health Record Privacy Notice

The template will help consumers learn more about PHR security and data management practices, much like nutrition labels do for foods.

Healthcare Innovators
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The Department of Health and Human Services (HHS) has unveiled an easy-to-read, standardized template to help consumers to learn more about the privacy and security policies and data practices of personal health record (PHR) products.

With the goal of helping PHR companies build greater trust among consumers, the PHR model privacy notice is similar to nutrition labels on foods, in that it simplifies complex information to improve transparency and consumer understanding, HHS officials said.

The PHR model privacy notice was launched at the first-ever HHS Consumer Health IT Summit, held Sept. 12 at the Department of Health and Human Services in Washington, D.C. The summit brought consumers, providers, and the public and private sectors together to discuss how best to empower consumers to be partners in their health and care through health IT.

"PHR vendors can use (the PHR model privacy notice) to communicate their data sharing, and security and privacy policies to consumers. This tool provides a uniform and easy-to-understand approach for PHR vendors to be transparent about key privacy and security issues," Farzad Mostashari, national coordinator for health IT, told the audience. "The model privacy notice is intended to enable companies to present complex information in a manner that is accessible, consistent, and conducive to promoting informed choice by consumers."

[Which healthcare organizations came out ahead in the InformationWeek 500 competition? See 10 Healthcare IT Innovators: InformationWeek 500.]

The Federal Trade Commission worked closely with HHS on the development of the template and will enforce it for entities under their jurisdiction. PHR vendors Microsoft, Dossia, and NoMoreClipboard have all agreed to use the notice on their websites.

Despite lackluster PHR adoption rates, Jessica Ohlin, a Frost & Sullivan analyst covering healthcare IT, said the move is a positive step that helps to prepare vendors and consumers for the day when PHR use will become more common.

"This announcement is another small step in the thousand mile journey towards a functioning health IT ecosystem, of which the PHR will be a critical part. It shows that the [office of the national coordinator of health IT], unlike other U.S. policymakers, is actually tackling this problem one smart, if incremental, step at a time." Ohlin told InformationWeek Healthcare. "There are so many elements of IT systems development and management that need to be put together for adoption to occur, and this is a case where government is actually helping with a problem by working with industry to tackle a formidable barrier to adoption."

Ohlin also said that the more prevalent PHR use becomes--with early and forced adopters leading the way and gradually generating mass understanding--the more exponentially the technology adoption will occur. She also said that while the emphasis on the PHR model privacy notice has been on building trust with consumers, it will take much more to convince people to use a PHR.

"PHR success depends on so many more factors than trust. Frankly, trust may be on the wane as an obstacle to PHR adoption, especially as people realize that in today's Facebook society they essentially have no privacy," Ohlin said. "Having a functional, easily accessible and actionable record or portal is going to drive consumer adoption more--and as with online banking, the appetite will come with the eating."

Find out how health IT leaders are dealing with the industry's pain points, from allowing unfettered patient data access to sharing electronic records. Also in the new, all-digital issue of InformationWeek Healthcare: There needs to be better e-communication between technologists and clinicians. Download the issue now. (Free registration required.)

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