One of the "five pillars" of meaningful use is to engage patients and their families in electronic health data. The stage one requirements of the HITECH Act, already in place, include the relatively simple tasks of sharing discharge instructions and providing patient education—electronically or by printing out the information from the patient's electronic health record. But it's clear that in future stages hospitals will be required to do much more, such as using remote monitoring devices and communicating with patients electronically to help them manage chronic conditions and to intervene before they require emergency care.
But engaging patients and families with electronic health data isn't just about HITECH requirements and stimulus money—it's also a way to foster collaborative decision-making between provider and patient, which, in turn, improves the patient experience, leads to better outcomes, and can reduce readmissions.
Americans pay more attention and become more engaged in their health and medical care when they have easy access to their health information online, according to a 2010 California HealthCare Foundation survey. For example, patients who use a personal health record say they take steps to improve their own health, know more about their healthcare, and ask their doctors questions they say they would not otherwise have asked.
But even though PHR use has doubled since 2009, consumer adoption is still low—just 7%, according to the national CHCF survey. The questions facing the healthcare industry are how best to get those numbers up and whose job it is to do so.
"We need to find better ways to tap into the skills of the consumer. There's hardly anyone more motivated to manage their own health or that of a family member," says Donna DuLong, RN, cochair of the American Health Information Management Association's Personal Health Information Practice Council. "The trick is finding the right tools and helping educate them and raise awareness."
The government line is that patients love the idea of electronic health data. "In my personal experience of providing care with an electronic health record I never found a patient who wasn't either intrigued or supportive of the use of an electronic health system, says David Blumenthal, MD, HHS' national coordinator for health information technology.
But there are many consumer concerns and barriers to patient adoption.
Privacy and security of data is a big one: About 75% of the people currently not using EHR/PHR who responded to the CHCF survey call it "a significant barrier" to participation. Right or wrong, some patients think that if they release their personal health information, insurers might use it to deny coverage, employers might use it to decide whether to hire or fire them, hospitals might sell the data to marketers, or careless employees might release the records to a nosy neighbor or an identity thief.
Concerns about misuse of data are legitimate, says U.S. Surgeon General Regina Benjamin, MD. "And that's where government comes in, to protect the information, [to ensure] that your information isn't shared with anyone unless you want it to be. That's important."
In fact, she says, physicians should stress to patients that electronic data is more secure than paper charts, which might be lying out on a desk where anyone can see them instead of behind a firewall in a password-protected computer. "We're trying to explain to people that it's easier to protect electronic data than it was to protect that paper chart," she says.
Benjamin's comment aligns with conventional wisdom among healthcare leaders: that the task of engaging patients in their electronic health data should fall primarily to primary care physicians.
"While there is still a lot of work to be done to overcome concerns about privacy, as more physicians adopt EHRs, their patients will have easier access to their health information. Most important, we need physicians and patients to start talking about how these tools can improve their communication and assist patients to be more in control of their own health," says Sam Carp, CHCF vice president of programs.
But busy doctors—or those who are reluctant adopters—need an incentive to do so. Partnerships will play a role in giving both docs and their patients a push toward embracing electronic health data, Blumenthal says.
"There's a shared responsibility across the government and the private sector. In a very direct and intimate way, physicians and nurses can help patients understand the value of EHRs," he says. "As in everything in our society, the private sector can't do it alone and the government can't do it alone."
Mark D. Smith, MD, MBA, CHCF president and CEO, agrees that physicians need that government push. "The more successful the current federal effort is to promote EHR adoption among physicians and other providers, the easier it will be for patients to access their health information from their most trusted source."
Online portals are one way providers are reaching out to help their patients become meaningful users. Sutter Health, a 24-hospital integrated system in Northern California, has an online portal that allows patients to send secure e-mails to their doctor's office about nonurgent health questions, view and chart test results, request a prescription renewal, view instructions from a recent doctor's visit, and request an appointment.
Sutter uses a number of tactics to protect health information and reassure patients with security and privacy concerns, including 128-bit SSL encryption, session timeouts, page expirations, and disabled data caching. Sutter also monitors the Web server for evidence of unauthorized break-in attempts. "In the unlikely event that the Web server is compromised, no health information would be exposed because it is not stored on the Web server. Patient information is stored only in the EHR, behind a firewall," according to the organization's privacy and security statement, part of a concerted effort to educate patients about the PHR.
More than half of the patients at the Palo Alto (CA) Medical Foundation, a multispecialty group practice that's part of the Sutter Health System, have accessed their personal health records. Quick access to lab tests and results is a big selling point for patients, says Vice President and Chief Innovation and Technology Officer Paul C. Tang, MD.
"Most of the people sign up at the time they are in the office," he says. "If we are going to order lab tests—or any tests, for that matter—I'll look up and see [if the patient] is online. Because it's on the EHR. And if they're not I'll say, 'You know, you can look at these results electronically. Would you like to sign up for that?' That's the most important time to approach a patient because then they will get the results oftentimes the same day, and they love that."
In the paper-based model, the time it took a physician to send out the tests, get back the results, and then pass them on to the patient was "horrible," Tang says. And, in fact, sometimes patients didn't get their results at all.
"In the electronic world they know they can get it reliably. They will get it [because] we have systems in place so that even if the doctor doesn't release it in time, the system will automatically release it at a certain point. That's one of our fail-safe mechanisms," he says. "You can look at it as what we owe the patient or you can look at it as a patient safety issue, because it's not going to fall through the cracks."
There are signs that there will come a time when patient access to health records is the norm. Patients are not only used to accessing data—they're demanding it. "They're using information they can glean off the Web right now; I think if we make more information that's pertinent to them available they will use it more effectively and they'll achieve better outcomes," Tang says. "That's the end goal, here."
The PHR will benefit outcomes by delivering healthcare that is personalized and appropriate for each individual, Tang says. "By partnering with patients we'll be more effective in dealing with diabetes, heart failure, coronary disease" and other chronic conditions.
Tang, who is also a vice chair of the federal HIT Policy Committee, says engaged patients and families will have a "big payoff" as the population of Medicare-eligible patients rises. Many say that engaging caregivers—those family members or friends who are often volunteering their time to care for their loved ones—will help ease the impact the aging population will have on the healthcare industry.
"We will need to partner with patients and their families in order to address the health needs of aging baby boomers," Tang says.