Literature Review and Environmental Scan: Evaluation of Personal Health Records Pilots for Fee-for-Service Medicare Enrollees. General Consumer Attitudes about and Usage of PHRs


While recent research on public attitudes and beliefs about PHRs suggests interest in their potential, few statistics on their actual usage are available, and PHRs have not yet caught on with many patients.[53] In a recent Harris Interactive survey,[54] approximately two in five respondents indicated that they maintained personal health information, but most said they were keeping these records in paper form.

Although some commercial vendors and health plans track the number of users registered for their own products, to date there is no comprehensive source of information on how many people total in the U.S. are using any type of PHR. It is believed that only a small proportion of the population has ever used a PHR, and that adoption of commercially available PHRs by consumers has been negligible.[55] A survey conducted by Aetna in 2007 found that an estimated four percent of the U.S. population uses some form of electronic PHR.[56] Another survey conducted in 2006 found that 17 percent of the adult consumer population has used a paper- or electronic-based PHR.[57] An estimated two percent of adult consumers in this survey have used PHRs to create and maintain their own records.[58]

A survey conducted in 2007 by the Foundation for Accountability (FACCT) as part of the Markle Foundation’s Connecting for Health Collaborative found that nearly three-fourths of respondents would be willing to routinely use one or more features of PHRs. The function they most frequently said they desired was the ability to communicate by email with their physicians.[59] About two-thirds reported they would use PHRs to track immunizations, identify errors in their medical records, transmit information between providers, and store and track medical test results. Interest in using PHRs was highest among respondents who had chronic medical conditions or were caring for those with chronic conditions, and thus were heavy users of health care services.

Carmella Boccino, Executive Vice President for Clinical Affairs and Strategic Planning at the America’s Health Insurance Plans (AHIP) estimates that 70 million insured people have access to PHRs through their health plan or insurer.[60] Among consumers who are offered PHRs through their health plans, it is believed that 15 to 20 percent will sign up.[61] A 2006 survey sponsored by the Blue Cross Blue Shield Association suggested respondents prefer an insurer-sponsored PHR to one provided by the government or a third-party vendor.[62] IBM, Pepsi, Dell, and other employers offer PHRs to their employees through health plans or third-party vendors. They advertise the use of firewalls to address issues of distrust. A number of health plans and employers provide, or are considering providing, financial incentives (e.g., reduced premiums) to employees who access the PHR.[63]

Consumers appear to be very concerned about the security and confidentiality of information contained in PHRs. According to David Lansky, Senior Director of the Health Program at the Markle Foundation, almost all (91 percent) consumers they surveyed in 2003 said that confidentiality of information in a PHR would be “very important” to them.[64] Yet most also said the convenience of being able to access their health information would outweigh their concerns.[65]

Research findings suggest that consumers’ concerns about privacy vary by the PHR sponsor. One survey found that electronic PHRs sponsored by primary care providers were more acceptable to consumers than electronic PHRs sponsored by an employer or pharmaceutical company. They preferred detached, paper- or PC software-based PHRs to employer or pharmaceutical PHRs.[66] A 2006 survey conducted for the Markle Foundation found that 74 percent of respondents were ‘very concerned’ or ‘somewhat concerned’ about their employers gaining access to the information and 79 percent of respondents were ‘very concerned’ or ‘somewhat concerned’ that their insurance company would gain access to sensitive health data.[67] Another survey found that 79 percent of respondents were ‘very concerned’ or ‘somewhat concerned’ that their insurance company would gain access to sensitive health data.[68]

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