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Patient Data Access Elusive for Nearly Half of Healthcare Consumers

A survey found that nearly half of all Americans are unable to get health records when needed, underscoring patient data access barriers that could impact patient health outcomes.

Even though the vast majority of Americans want quick patient data access, many of them struggle to obtain their health records, uncovered a new survey conducted by Propellar Insights on behalf of DrFirst.

The survey of more than 1,000 healthcare consumers over age 18 found that 92 percent of patients think it’s important to have quick and seamless access to their medical records. However, 45 percent of patients reported having trouble getting health records from a patient portal and 42 percent stated that they even had trouble getting health records from their provider during a time of need.

Most of the surveyed respondents stated that managing health records is a difficult task. In response to the reported difficulty, 46 percent of patients keep printout health records, 23 percent use a mobile app, and 17 percent have a copy saved on their computer. Yet some patients (32 percent) have decided not to store them at all.

Patients also reported concern regarding the ability to share their personal medical information with family members and caregivers, with 52 percent of respondents stating that it is difficult.

Health record portability has also been an issue for patients. More than 30 percent of Americans are worried about accessing their patient data during times of travel or being away from home.

This lack of data access is happening despite federal rules. Policymakers agree that full data access is a fundamental patient right. The 21st Century Cures Act that went into effect in 2020 requires all healthcare organizations to offer immediate access to health information, including clinician notes.

Overall, patient data access is about improving patient engagement and empowerment in care. When patients have full health data access, they can review and understand their personal health information and will be more involved in their own care.

Healthcare providers who have offered patient portals and clinical note access have seen a difference in their patients.

A 2020 report published in JAMA Network Open found that 18 percent of providers said their patients mentioned the notes during a later clinical encounter, highlighting gains in patient engagement and activation.

In addition, 14 percent of providers stated that their patients had called the office with a question about clinical notes.

“We’ve learned over the past 10 years that truly transparent communication brings enormous clinical benefits to patients,” said OpenNotes co-founder Tom Delbanco, MD, co-senior author of the JAMA study. “It helps them manage medications more effectively, and it builds trust and patient safety.”

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