Consumers who use personal health records say they know more about their health, ask more questions, feel more connected to their physicians and take steps to improve their health, according to a new survey that many are calling ground-breaking.
The study -- commissioned by the California HealthCare Foundation and conducted by Lake Research Partners -- surveyed a representative sample of 1,849 U.S. adults between Dec. 18, 2009, and Jan. 15, 2010. CHCF is the publisher of iHealthBeat.
Michael Perry, a partner at Lake Research Partners, said the survey provides the first data nationwide on the use and benefits of PHRs. He noted that previous research generally has been speculative, asking "would you use" this kind of tool.
Jennifer Covich Bordenick, CEO of the eHealth Initiative, said the "survey shows that patients want to get engaged in their health care," adding, "PHRs are one of many tools that can help accomplish that. It is now just a matter of giving them the tools necessary to become meaningful participants in the health care system."
Despite the benefits of PHRs, adoption remains relatively low with just 7% of adults reporting having used a PHR. Still, that is a 159% increase from two years ago when a separate survey from the Markle Foundation found that 2.7% of consumers had used a PHR.
Who Is Using PHRs, Who Benefits Most
Younger, more-educated individuals with higher incomes are the most likely to use PHRs, the survey found. However, less-educated patients with lower incomes and multiple chronic conditions reported the greatest benefits from PHRs.
For example, 58% of PHR users with annual incomes lower than $50,000 reported that they feel more connected to their physicians, compared with 31% of higher income users. Meanwhile, 55% of PHR users without a college degree reported asking their doctors questions they might not have asked before, compared with 26% of PHR users with a college degree.
In addition, the survey found that 40% of PHR users with two or more chronic conditions reported taking actions to improve their health, compared with 24% of other respondents.
Noting that 75% of the $2.3 trillion spent on health care in 2008-2009 went to chronic conditions, Jane Sarasohn-Kahn -- a health economist, principal of Think Health and author of the Health Populi Blog -- said PHRs have the potential to curb rising health care costs.
Steven Findlay, senior health policy analyst at Consumers Union, said the "digital divide in the U.S. is very real." He stressed the need to make PHRs "easy-to-use" for people with less education and lower health care literacy, as well as older populations.
Barriers to PHR Use
According to the survey, privacy concerns are the top barrier to PHR use. Seventy-five percent of non-PHR users said they worry about the privacy of their information.
Findlay said the privacy finding shows that the "pressure is still on" and that is "a good thing."
Sam Karp, vice president of programs at CHCF, noted that once people have access to personal health information through PHRs, "concerns about privacy are lessened."
According to the survey, 47% of PHR users are not too worried and 11% of PHR users are not at all worried about the privacy and confidentiality of the information in their PHR.
The survey also found that 61% of non-PHR users said they don't need PHRs to handle their health needs.
Perry said that his firm's regression analysis showed that there was a greater correlation between PHR use and whether consumers believe they need a PHR to handle their health needs than PHR use and privacy or any other barrier. "That is the one in our analysis that stood out," he said.
The survey also found that:
- 51% of non-users said PHRs "might cost too much";
- 38% of non-users said PHRs "would take too much time"; and
- 26% of non-users said they "don't like computers/Internet."
How To Drive Greater PHR Use
Joshua Seidman -- acting director of the Office of the National Coordinator for Health IT's meaningful use division -- noted that patient engagement is a high priority for ONC. He said, "Certainly, we are hopeful [the PHR adoption rate] will be much greater two years from now."
Seidman said the reason for low PHR use could be "in part a reflection of providers not encouraging patients to use them."
Findlay agreed, noting the need to leverage trust in physicians to encourage PHR use.
In a blog post, John Moore, a health IT analyst for Chilmark Research, writes, "We still have a long way to go to drive further adoption, but PHR adoption/usage does appear to provide broader societal benefits." He added, "To date, there has been very little out of Washington that addresses the consumer. Hopefully [these results] will act as a wake-up call for without consumer/citizen support much of the intent of the HITECH Act will be wasted."
Karp said, "We want policymakers to hear the consumer voice," particularly as we move into health care reform.
Based on the survey findings, CHCF offered five recommendations:
- Congress should develop consistent PHR privacy safeguards;
- The Obama administration should ensure there is rigorous enforcement of current health privacy rules;
- ONC should expand the timeframe for EHR adoption;
- The Health Resources and Services Administration should educate community health centers about PHR benefits; and
- HHS should raise public awareness of PHR benefits and risks.
Karp called the recommendations "achievable and actionable."
Future Research
Findlay said that while the survey provides useful data, it is "just a start." He said future research should explore more about the functionality of PHRs -- what kind of information is included in PHRs and how consumers are using that information.
Findlay said such information will be "critical going forward" and will help vendors develop better tools.
Covich Bordenick said, "We need to determine which health IT applications consumers find most helpful. We should explore how consumers are accessing their information, what information they want, and how they want it delivered -- mobile, online, etc. We need to leverage these findings to meet consumer demand and then build tools to accommodate their lifestyle."
Covich Bordenick added, "The variations in geography are interesting. More research is needed to figure out why the Western region’s usage is double that of all the other regions." She said, "Pinpointing why the South, Midwest, and Northeast are slower to adopt will be crucial."