PHRs: What's stopping more consumers from viewing them
Patients now have more access to their personal health information than ever before, thanks to the HITECH Act and its meaningful use incentive program. Stage 2 of the MU program calls for doctors to actively engage with patients and their families through patient portals to help them manage their health.
In study published in last month’s Journal of Medical Internet Research, researchers from Johns Hopkins University, the National Cancer Institute, and Ohio State University predicted that adoption of patient health records could reach 75% by 2020.
To many observers, that forecast seems woefully optimistic. Physician resistance, interoperability challenges, patient identify issues, and the usability of different portal technologies all stand in the way of widespread use. In addition, some medical practices and health systems charge a fee for accessing their portal, which can discourage patient use.
“Some of the figures that we’ve seen point to about 25% adoption now, which I think makes 75% adoption four years from now fairly unrealistic,” says Chilmark Research analyst Brian Eastwood.
A recent study in the American Journal of the Medical Informatics Association found that patients will view their clinician’s notes when prompted by email alerts, though viewing dropped off without the alerts.
A separate study at a large integrated health system, Geisinger Health System, found poor uptake of a patient portal a decade after it was implemented.
John Santa, director of dissemination for OpenNotes - a nationwide movement that encourages doctors to voluntarily share their complete notes with patients - says peoples’ interest in viewing their notes varies depending on their particular circumstances, such as if they are dealing with a chronic condition.
“About 70% of people who do open notes look at them once, something like 15% look at them two to five times and 1% look at them 10 or more times,” Santa says.
However, in a 2012 study in the Annals of Internal Medicine, only 80% of people actually looked at a note, but 99% wanted to be able to continue to look at their notes.
“The best performing physicians and health systems achieve significant rates of adoption of core technologies like secure messaging, patient access to records and scheduling tools,” says Arien Malec, a vice president at RelayHealth and former employee of the Office of the National Coordinator for Health IT.
Malec points to Kaiser Permanente, which achieved a 69% adoption rate of its patient portal following a long-term push. A shorter-term press by the Department of Defense’s Military Health System got more than a million beneficiaries to sign up on that portal.
These results show that patients want access to their records and other online tools. According to a 2014 survey by Accenture, more than two-thirds of consumers in the U.S. with chronic health problems believe patients should be able to access their healthcare information, and half believed doing so outweighed any privacy risks.
A key strategy is getting the whole organization to buy into patent engagement, Malec says, adding that one can’t just put up a poster and hope adoption will happen. “Success leaves patterns, and it is clear that successful organizations integrate patient access and engagement into their clinical and business practices in a substantive and holistic way,” he tells Healthcare Dive.
From a technology standpoint, most vendors can support open notes, Santa says. The issue is often physician resistance. Doctors worry that sharing their notes will increase their workload, mostly through email, he explains, although that perception often tails off once they implement record sharing.
Others worry about the adequacy of their notes or that transparency will lead to higher malpractice rates. In fact, the opposite appears to be true, with record sharing leading to greater trust and confidence in physicians.
Malpractice carrier CRICO has been tracking Beth Israel Deaconess Hospital for several years to determine whether open notes can improve communication around errors and safety issues, Santa shares.
While it is too soon to see if malpractice rates have declined, there is been no upward trend.
There are still practices that have chosen not to invest in the technology, due to cost, convenience or some other reason, notes Lesley Kadlec, director of HIM excellence at the American Health Information Management Association. AHIMA is active in the GetMyHealthData campaign, an alliance of consumer and industry groups working to increase access to digital health information.
Most of OpenNotes’ work has involved larger health systems and medical groups that have dedicated IT staff and a smaller subset of vendors. But the group is starting to look at small and medium-size practices and specialty practices. “It’s a bit more challenging because you’re talking about 35 to 40 different vendors that serve that market and some of them are very unique,” Santa says.
Another issue is the records' interoperability, which varies from region to region and vendor to vendor.
“If you have appointments with two or three different facilities that are not sharing a patient portal, you might have to keep track of three different logins and understand how to use three different types of systems, and you’d be getting appointment reminders in three different places,” Kadlec says.
“That can be challenging, especially with people who are not particularly comfortable with technology or who would prefer to have everything in one place.”
Lack of interoperability can also occur within an integrated health system when disparate technology is purchased.
The majority of patient portals were created by slapping technology onto existing systems to achieve the government’s meaningful use goal and not to foster patient engagement, Eastwood says. Even the more sophisticated patient portals are not typically designed to really engage patients, he adds.
“The logins are there, but the designs are very rudimentary,” usually a list of links and options. Compare that with a wearable app that is color-coded and offers images and actual data. “It’s not something that you want to engage with.”
Moreover, “limitations around digital identities and the need to identity-proof individuals will still require access to health records to be enabled on a setting of care by setting of care basis,” Malec says.
For patient portals to be truly effective, they need to connect to multiple members of a patient’s care team, Eastwood says. They also need to provide information in language the patient can understand. “In a lot of cases the information is presented without any sort of explanation … It’s sort of a data dump as opposed to a useful tool for helping patients understand” their overall health.
Chilmark has been “bullish” on patient portals for a long time, Eastwood adds.
As organizations move toward value-based care models and more coordinated care, they may also be moving beyond just pushing information to patients and add functionalities that really help with health management.