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Personal Health Record (PHR) Use Ups Cancer Follow-Up Rate to 86%

Results about personal health record (PHR) use for colorectal cancer follow-up access might be replicable across different cancer types with some tailoring, researchers said.

Personal health record (PHR) use is key to driving patient engagement, with recent JMIR Cancer data showing PHR use among colorectal cancer survivors increasing access to follow-up care and screening by more than 30 percentage points.

Additionally, PHR use increased the proportion of survivors who believed access to certain follow-up cancer screenings was important to their health and well-being, according to researchers from the Regenstrief Institute, the VA, and Indiana University’s schools of medicine and nursing.

PHRs are different from EHRs in that they are patient-facing and give users insights into their own health information. Most PHRs, particularly PHRs “tethered” to the EHR, come with some secure messaging and patient notification systems, giving the technologies even more patient engagement power.

“PHRs have the potential to engage patients with cancer and cancer survivors to play a more active role in their surveillance care and to increase self-efficacy and knowledge about surveillance,” the researchers wrote in the study. “Providing patients access to their own health information, management strategies, web-based resources, and communication tools with providers can increase self-management and the quality of patient-provider communication, which lead to better patient outcomes.”

That communication functionality is especially important for cancer patients who need to regularly access follow-up care and cancer screening even after entering remission. According to the researchers, survivors of colorectal cancer are at risk for recurrence in the first two or three years of remission, so engaging patients in follow-up care is crucial for early detection.

But access to that follow-up screening isn’t always ideal, the researchers said, with access rates ranging anywhere from 23 to 94 percent, the researchers said.

In a pre- post-intervention study of 28 colorectal cancer survivors, the researchers found that a PHR designed specifically for survivors of the condition could be effective at engaging patients in follow-up care. The PHR, titled the Personal Health Record for Colorectal Cancer Survivors (CRCS-PHR), was designed to be tethered to the EHR and have secure messaging and patient notification functions that could prompt users to get follow-up screening care.

“This is a system that we built leveraging OpenMRS, an open source electronic medical record system platform developed at the Regenstrief Institute, and tailored it to respond to and meet the specific needs of colorectal patients and survivors,” David Haggstrom, MD, MAS, research director for the Regenstrief Institute Center for Health Services, senior author of the study, and a co-designer of the digital PHR, said in a statement. “It’s really a shift in who has access, even ownership of the survivor’s health record.”

All said, PHR use was linked to better adherence to follow-up cancer screening. Prior to PHR use, access to colonoscopy was 52 percent, but following introduction to the tool, that figure jumped to 84 percent. PHR use was also linked to an increase in CT access, with access going from 67 percent to 86 percent.

Patient data access via the PHR also increased the proportion of patients who believed access to certain screenings, like carcinoembryonic antigen (CEA) testing, was important. However, that increase was modest because most of the patients believed CEA testing was important even at the study’s baseline.

Haggstrom, who is also a research scientist at the Richard L. Roudebush Veteran’s Administration Medical Center in Indianapolis, an associate professor at IU School of Medicine, and a researcher at the Indiana University Melvin and Bren Simon Comprehensive Cancer Center, indicated that the tool’s success was a result of its patient-first design.

“Combining patient-centered design with our extensive experience with doctor-patient communication and electronic medical records we saw an increase in adherence to national guidelines recommending critical follow-up by colorectal cancer survivors using the tool,” he noted.

These findings could be replicable across other cancer types, according to Eric Vachon, PhD, RN, the study’s corresponding author and a Regenstrief Institute research scientist, but with some caveats.

“The general framework that we’ve taken with colorectal cancer survivors is one that can serve as a guide for designing technologies for other cancer populations or types of cancer,” Vachon explained. “But, in my experience, the clinical details and unique needs of different types of cancer require different approaches.”

To replicate this approach to digital patient engagement and PHR use, Vachon recommended looking at the specific needs of patients with different types of cancer. After all, they are all different disease states that can impact the body, and therefore patient medical needs, differently.

“I think that there is a huge opportunity to implement personal health records among all types of cancer more widely and to design and test them for the many types of cancer there are,” added Vachon, who is also an assistant professor at IU School of Nursing and a researcher at the IU Simon Comprehensive Cancer Center.

“When people think about cancer, they often think of a large monolithic disease, and along with heart disease, cancer is indeed one of the two most prevalent diseases among the U.S. population. But cancer is many diseases and they all require their own unique approaches, so there is much work ahead of us all – clinicians, research teams, patients and caregivers.”

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