Privacy concerns could present a significant psychological barrier to individuals signing up for personal health records while a sizable majority of the public wants a panoply of privacy protections wrapped around PHRs, according to a new public-opinion survey.
"The results documented firm attitudes in a majority of adults surveyed regarding privacy practices in the unfolding world on online PHR services," according to a seven-page report of the survey findings. The survey discussion was part of a news conference on PHRs hosted by the Markle Foundation and its Connecting for Health program to promote the use of interoperable healthcare information technology.
The survey of 1,580 adults was conducted May 13-28 for Markle by the marketing research organization Knowledge Networks, New York, using a survey instrument developed by veteran 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.
According to Markle, the national survey of a representative sample of adults 19 years of age and older was conducted online, and included both those who use the Internet and those who do not.
For now, utilization rates of PHRs are exceedingly low, according to the surveyless than 3% of respondents, which corresponds to about 6.1 million people in the U.S., have a PHR. Interest in PHRs, however, is much higher, with 33% of survey takers (representing 75 million people) indicating they are at least somewhat interested in enrolling in a free, online PHR system and nearly 14% (31 million) of those responding were very interested in signing up for a PHR.
Until recently, PHR availability has been the province of smaller, stand-alone vendors and so-called "tethered" systems with primary data links to the providers, payers and employers. The rollouts of PHR platforms by Microsoft Corp. last fall and Google in February will be a game changer for the estimated 106 million people the survey shows are already interested in signing up, according to Westin.
Demographic information about survey respondents was not published with the survey results Wednesday, but Westin said a broader report with more details about who was interested in what will be ready for release next month.
"That's quite a market," he said. "I think we're just beginning the process of considering personal health records. If you look at the demographics for that 31 million people (with high interest in PHRs), they run across all the demographic categories of age, income and education."
The two IT giants, Microsoft and Google, and even some of the second-tier of PHR system vendors, apparently have their work cut out for them in terms of marketing to improve consumer acceptance, according to the survey. When individuals were asked whether their interest in using a free, online PHR would be "greater," the "same," or "less" if the PHR were offered by various entities, Internet-based services from companies such as Intuit, Google, Microsoft, Revolution Health Group and WebMD ranked lowest, with just 6% of respondents indicating their interest would be greater with them. Westin said "greater" was a proxy for preference of PHR providers. In comparison, 33% of respondents indicated their interest in PHRs would be greater if the PHR were provided by a hospital or medical practice they use, the most favored PHR providers, according to the survey.
Westin said interest in the major IT companies' products will likely grow in the next couple of years if they don't have a big, highly publicized privacy problem. The relative newness of their products most likely is the reason their preference scores were so low in the May survey period, he said.
When it came to enforcement of privacy protections, survey respondents fired both barrels and then reloaded, giving all four enforcement options suggested very high marks.
Eighty percent of respondents indicated that legal enforcement of privacy policies by the Federal Trade Commission and the state attorneys general offices was effective. The same percentage expressed confidence in some form of independent certification of good practices. But an almost equally high 76% of respondents wanted Congress to pass new laws expanding legal privacy protections to PHRs, while 76% also indicated that market forcesin effect, vendors policing themselvesalso would provide significant protection.
"I think that was one of the more surprising things," Westin said. "There is an old American tradition, if you don't like anything, pass a law. It may well be that everything needs to be done to protect privacy; you can't just put your hope in one tool.
"Take market forces," he said. "I think people understand that if Google or Microsoft gets a bad rap because they've done something with people's information, they could wipe out their personal record. But people (also) think it's a very good thing if the AGs bring the suits they have over the past decade."
Consent for use is another big issue with PHRs, according to survey results. More than 90% of respondents indicated that their expressed permission should be required for each use of their information, with 44% indicating patient control was "essential" in deciding to use a PHR, and another 43% responding it would be "one factor" in that decision.
A related question, whether individuals could make "informed choices about how their information is collected and used," had similar ratings, with 42% indicating it was an essential factor and 45% reporting it was one factor.
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