Ensuring the privacy and security of information stored in personal health records while promoting awareness of the benefits of their use and ensuring the portability of the information they contain were named as the key elements necessary for widespread adoption of PHRs during a meeting Tuesday of the consumer-empowerment work group of the American Health Information Community, the health information-technology advisory panel for the HHS.
The work group is tasked with making recommendations to AHIC and to HHS Secretary Mike Leavitt that will help spread adoption of PHRs, and it worked at hammering out exact language that would define how to accomplish this goal, what mechanisms to use, who the stakeholders are in the process, and when its recommendations should be initiated.
There was concern about duplicating the efforts of other work groups and making recommendations that would require acts of Congress or major policy changes. It was also reiterated that AHIC itself could not promulgate binding federal rules, but it could still be extremely influential in shaping policy. Urging the use of federal procurement mechanisms and IT certification processes were identified as possible avenues of making PHR vendors see things the work group's way.
"There might be opportunities for us to give legs to some of these recommendations," said Kelly Cronin, director of the Office of the National Coordinator for Health Information Technology's office of programs and coordination.
The group reviewed a list prioritizing its recommendations. It was topped by protecting privacy and security, promoting consumer and provider awareness, and increasing interoperability and data liquidity.
Work group Co-Chairwoman Nancy Davenport-Ennis, the founding executive director, president and chief executive officer of the National Patient Advocate Foundation, said that this last point was the "heart and soul" of a portable PHR. The need for portability was revisited several times during the meeting, and it was noted that -- without it -- a person's information could be "held hostage" under any number of scenarios.
The panel also determined that mandating PHR functions and setting interoperability standards were not items in its jurisdiction, and it brainstormed on what its role would be in a "social marketing" effort to promote consumer awareness of the benefits of PHRs, as well as the secondary use of the data they contain.
Davenport-Ennis noted that there was a lack of a business model for PHRs, and Ross Martin, director of business technology for Pfizer, said that what was also missing was a compelling narrative illustrating to patients why they should invest any energy into developing their own medical records.
"We don't have enough of a story to tell yet," Martin said.
Cronin suggested that the group keep an eye on the Blue Cross and Blue Shield Association's program promoting PHRs and see if any lessons can be learned from it.What do you think? Write us with your comments
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