The healthcare industry got closer to agreeing on how to handle online personal health records with the unveiling of a new PHR framework last week.
A collaboration of corporations offering PHRs, payers and several well-known provider organizations emerged from a private, multiyear effort orchestrated by Connecting for Health, an arm of the Markle Foundation, to come up with a consensus framework of operational, privacy and security guidelines for PHRs.
The collaborations Common Framework for Networked Personal Health Information was developed and endorsed by major PHR vendors including Google, Dossia, Microsoft Corp. and WebMD, as well as payers Aetna and the Blue Cross and Blue Shield Association. Also involved were Geisinger Health System, Danville, Pa.; New York-Presbyterian Hospital; the Palo Alto (Calif.) Medical Foundation; Partners HealthCare System, Boston; the Vanderbilt Center for Better Health, Nashville; and the Veterans Affairs Department.
This is going to plot a middle ground and some principles that represent a realistic approach to managing our information in a digital era, said Mark Frisse, a physician and professor of biomedical informatics at Vanderbilt University and director of the Volunteer eHealth Initiative at the Vanderbilt Center for Better Health.
Frisse said it is just too early to tell how big a role will be played in the future by PHRs or the new consumer-access service providers like Dossia, Google, Microsoft and others that are lining up to provide connections and content to them.
I think its just going to be part of the solution that evolves over time, Frisse said. I can no more predict how PHRs are going to play out than I could about the impact of the Internet on productivity 20 years ago.
The framework is more than 200 pages long and also includes a Web-based animated presentation narrated by David Lansky, president and chief executive officer of the Pacific Business Group on Health, which also endorsed the guidelines.
In his narration, Lansky outlined the work as rules that need to be in place to assure the consumer that their data will be handled appropriately and in the ways that they wish, and also assure the health data source that when they release the consumers information to these Internet information providers that information will be handled in a way that is consistent with their own obligations, both moral and legal, to that patient.
Lansky also said that there is great potential for risk to the security and confidentiality of consumers health information as less-regulated organizations record personal health information with these new, Internet-based services.
That opinion was borne out in a survey of 1,580 adults conducted May 13-28 for Markle by the marketing research organization Knowledge Networks, New York, using survey questions by privacy pollster Alan Westin, a principal with the Privacy Consulting Group, Teaneck, N.J., and a professor emeritus of public law and government at Columbia University, New York.
While just fewer than 3% of respondents indicated they were using a PHR now, another 14%, or what translates as 31 million adults, were very interested in a free online PHR. Thats quite a market, Westin said. I think were just beginning the process of considering personal health records.