- Patients enjoy having patient portal health data access because it allows them to take ownership of their own care, makes them feel empowered as partners in their treatments, and helps them detect and identify errors their providers may have made in their medical records, according to a recent study.
The findings, published in the Journal of Medical Internet Research, helped investigators from Beth Israel Deaconess Medical Center answer the question: what motivates patients to access their own health data?
Beth Israel Deaconess has been at the forefront of expanding patient access to health data as one of the leading healthcare facilities in the 2010 OpenNotes pilot.
The researchers have now pinpointed what makes health data access so attractive to patients.
“Opportunities to more effectively connect with various patient populations and family care partners through shared notes are vast, but relatively under-explored, and patients, families, and communities remain a largely untapped resource as health partners,” the team said.
The researchers accepted qualitative reports from patients with OpenNotes access between August 2014 and 2015. These reports included information about how often patients looked at their notes and engaged with a feedback tool. The feedback tool allowed patients to report errors in their medical records or even anonymously give provider feedback.
The reports also had the option for patients to give feedback on the process of looking at their health data and clinician notes.
The team received 260 qualitative reports in total, and 98 percent of the reports indicated that patient data access was beneficial. Sixty-eight percent of the reports helped reveal four common themes about why patients liked accessing their own health data.
First, patients appreciate being able to confirm or remember the next steps in their care plans.
“I sometimes have white coat syndrome where I am a little nervous in the doctor’s office and then cannot remember all that was said,” one respondent reported. “Reading the notes after my visits confirms what I have heard.”
Patients also like having quicker access to their test results and the ability to share their information with family members and other care partners.
Access to medical notes also confirmed positive perceptions of patients’ providers, the researchers found.
“I felt like someone cared,” a respondent noted. “May seem quite simple but it was a nice human touch. I am a nurse and I am impressed.”
The reports also indicated what patients enjoyed about the clinician note feedback tool.
Foremost, patients appreciated being able to detect and report medical errors. The tool also helped patients identify problems in their own communication strategies with providers that could result in medical record errors.
“[Reading] my notes allows me to see how well I am communicating my issues, which leads to how well my doctors are hearing and documenting my issues,” a patient participant explained. “It also allows me to catch errors.”
Interacting on with the feedback tool also improved partnership and engagement between patient and provider, as well as bidirectional communication and educational goals.
Patients also noted the importance of giving their providers feedback using the tool. Patients explained that prior to the feedback tool, they felt uncomfortable offering critiques or praise about their providers. Patients felt more empowered to give feedback to their providers now that the tool can be completely confidential.
The researchers were notably struck by how patients value simply seeing their medical information. This finding showed that the act of just sharing clinician notes and medical record access helps empower patients.
The team also noted the effect these findings can have on providers going forward. Ultimately, understanding patient values will help providers determine their next steps.
“Although these reports reflect the perspectives of patients and care partners who are already engaged by reading notes, organizational exploration of what patients value about note transparency can have a large impact, considering that over 15 million patients have access to their notes across the country today,” the researchers said.
“Building a system in which people want to engage requires knowing what matters most to them,” the researchers explained.
Going forward, researchers should focus on what matters to patients and families who do not use OpenNotes or their patient portals. Understanding these values or any potential health literacy limitations can help drive adoption in these untapped populations.