- Patient data access has taken center stage in the healthcare industry. Policymakers agree that full data access is a fundamental patient right. Providers assert that patients who access their own health information will be better informed and therefore more engaged in their own care.
And according to new data from the University of California Los Angeles (UCLA), patients believe data access will help them understand their health and communicate with providers and family members.
In a recent report published in Practical Radiation Oncology, the researchers looked at patient perceptions of expanded data access. Specifically, the researchers looked at how patients with cancer viewed increased patient data access.
An initial survey of 136 patients revealed that most anticipated that data access would improve their healthcare experiences.
Ninety-nine percent of respondents said they believed patient data access would improve their understanding of their diagnosis, 98 percent said it could improve their knowledge of treatment side effects, 96 percent said data access could reassure them of their treatment goals, and 99 percent said data access would improve communication with their family caregivers.
Eighty-eight of those who completed the baseline survey also completed a post-survey that collected insights about patient experiences with health data access.
Ninety-six percent of the post-survey respondents said patient data access improved their knowledge of their diagnosis, 94 percent said they better understood their treatment side effects, and 96 percent said they felt more reassured about their treatment.
What’s more, the surveys largely disproved common misconceptions related to patient data access. Some providers have expressed apprehension that expanding patient data access and publishing clinician notes in the EHR will make patients confused or erode patient-provider relationships.
The UCLA researchers have added to the collection of data that could assuage those fears. Only 11 percent of patients expressed increased worry after viewing their own data and clinician notes. Only 6 percent of patients were left confused and only 4 percent encountered information that they later regretted reading.
This data makes the case for expanded patient access to health data, the researchers concluded. Although patients do have the legal right to their own medical information, the healthcare industry as a whole must leverage systems that make data access more streamlined. Getting rid of the barriers to patient data access will ensure more patients capitalize on their right to view their medical records.
Some industry stakeholders have made considerable headway in granting more patient data access. Patient portals have been instrumental in allowing patients to view their medical histories, lab data, and other key information. These tools are patient-facing and trump the hurdles that manual data access can present.
OpenNotes, the health data management philosophy that calls for provider notes to be presented to the patient, has also become an industry mainstay. In October, OpenNotes celebrated 30 million patients who have access to their clinical notes.
This expanded access has had a vital impact on patient health, according to Catherine DesRoches, DrPH, the executive director of OpenNotes.
“Our research shows that patients benefit from reading their notes. They report doing a better job taking their medications and finding serious mistakes in their visit notes,” DesRoches said in a statement. “Patients also say that reading notes helps them feel more in control of their care and builds trust between them and their clinicians.”
Ultimately, technology should make enhanced patient data access more possible, said Tom Delbanco, MD, the co-founder of OpenNotes and John F. Keane & Family Professor of Medicine at Harvard Medical School and Beth Israel Deaconess Medical Center.
“The benefits of sharing are enhanced by close communication among clinicians, patients, and families. We are exploring ways to make notes truly collaborative through co-generated medical records,” Delbanco said in a press release. “Our ultimate goal is for shared notes to become the standard of care.”
Of course, there are some caveats providers must acknowledge when pushing for better patient data access. Although the UCLA data showed that patient confusion is less of a concern than some providers may believe, clinicians still must ensure their notes are clear for patients.
Research has suggested offering explanations or using natural language processing (NLP) algorithms to translate medical terminology could be helpful in driving patient understanding of a clinician note.
Additionally, providers must be mindful of how they will deliver certain types of clinical data. A cancer diagnosis, for example, should still be reserved for an in-person meeting or phone call as to preserve the patient-provider relationship.