The results of a survey released today of thousands of users of electronic personal health records nationwide (PHRs) revealed that while the wealthy tend to use them more, it was the poor who derive the greatest benefits from online records.
Unlike electronic health records (EHRs), which are used by doctors and other healthcare providers, PHRs are used by the patients to access information online about their health, whether it is the latest medical laboratory test results or their medical histories from various sources. PHRs can also be used to communicate with physicians through e-mail.
PHR websites are being offered by hospitals, physician practices, healtcare plans and private businesses such as Google and Microsoft, for consumers have their healthcare information aggregated for easy access.
The survey, funded by the private California HealthCare Foundation and conducted by the Lake Research Partners, showed the use of PHRs has more than doubled over the past two years, though it has remained low: one in 14 Americans.
The survey included 1,849 respondents and it also found that two out of three Americans are concerned about the privacy of their health information, but that the concern dissipates through experience with PHRs as well as the benefits from the sites. Consumers with online access to their health information also tend to pay more attention to their health, the survey found.
Not surprisingly, consumers prefer to use PHR websites that come from their health care providers.
"Most care is self care, particularly those with chronic conditions. So, this research is really important to helping us understand why consumers are using PHRs and other patient-facing technology and what some of the challenges are," said Joshua Seidman, the acting director of the Meaningful Use Division of the Office of Provider Adoption Support at the Office of the National Coordinator for Health Information Technology (ONC).
The ONC is in charge of managing about $46 billion earmarked through the Health Information Technology for Economic and Clinical Health (HITECH) Act, passed earlier this year. In order to receive tens of thousands of dollars in reimbursements for eHealth technology rollouts, hospitals, physicians practices and other healthcare providers must meaningful use of their online health records systems.
Seidman said that when the definition of "Meaningful Use" was being discussed at the ONC, the health IT Policy Committee recommended that patient and family engagement be one of the five main health policy outcome priorities.
"This is something that's a high priority for us," he said. The ONC plans to perform its own surveys of PHR users over the next two years, he said. "One of the really critical findings here ... is the frustration with health care."
The survey found that 64% of respondents wish they had more information about a loved one's care; 60% indicated they wanted their doctors had more time to talk to them; 55% said they felt like they had to be their own healthcare advocates and that they wished their doctors talked more and shared more information with them.
Fifty-one percent said they wish their doctors knew them and their health better.
The California HealthCare Foundation's survey also took into consideration demographics of PHR users. Of Americans who use PHRs, 13% have household incomes of $75,000 or greater, 12% are college graduates and frequent Internet users, 11 % are men aged 29 to 45, 9% have chronic conditions and 8% live in metropolitan areas.
"These early adopters of PHRs are the typical subgroups who adopt new technologies both inside and outside of healthcare, but we'll likely see this group broaden over time," said Michael Perry, a partner with Lake Research Partners.
Perry said that while the typical user of PHRs are younger, higher educated and have higher incomes, individuals with less education, lower incomes and those with chronic health conditions who may benefit the most.
Specifically, Perry said 58% of PHR users with annual incomes under $50,000 feel more connected to their doctors versus 31% with those with higher incomes. Fifty-five percent of users without a college degree ask more questions as a result of their PHRs versus 26% of college-educated users.
And, 40% of users with two or more chronic health conditions did something to improve their health as a result of their PHR versus 24% of others surveyed.
"So while these populations may be less likely to be using PHRs now the potential for them is perhaps greater," Perry said. "This is intriguing information that we need to learn more about, but suggests that making PHRs more available and accessible to these populations could really reap some health benefits."
Jane Sarasohn-Kahn, a health economist and principal with THINK-Health and the Health Populi blog, said $2.3 trillion is spent every year on health care and 75% of that goes toward the care of the chronically ill, such as those with diabetes or congenital heart failure.
She noted that one in three of those PHR users surveyed said the information inspired them to do something about their health. "There is this light bulb moment in this survey ... and that is that people do things to improve their health when they have a PHR," she said.
California lead the country in use of PHRs with 15%. Regionally, the Northeast showed 6% use, the south and Midwest had 5% use and the west overall had 11% use.
Sixty-four percent of survey respondents said the most useful thing about a PHR is ensuring their medical information is correct; 57% said looking at test results were useful; 50% said they liked being able to e-mail healthcare providers.
Also scoring high was reviewing prescription information online, scheduling doctors visits, receiving reminders for tests, seeing doctor's instructions, sharing information with family members and keeping track of a child's records.
Dr. Kate Christensen, the medical director for the Internet Services Group at healthcare provider Kaiser Permanente, said the survey's findings confirmed her company's own studies of its PHR users.
She said one of the most important aspects of PHRs going forward will be to make them useable by people of all ages.
"We need to provide something useful ... not something that necessarily looks the best or has the slickest, newest, Web 2.0 functionality, but [something] that's taking care of people's health business," she said. "They want to make appointments, refill their medicines, check their chart, e-mail their doctors and go about their lives."
Lucas Mearian covers storage, disaster recovery and business continuity, financial services infrastructure and health care IT for Computerworld. Follow Lucas on Twitter at @lucasmearian or subscribe to Lucas's RSS feed . His e-mail address is firstname.lastname@example.org.