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Patient Privacy News

25% of Patients Did Not Access Data Over Patient Privacy Concerns

A recent ONC study found that 25 percent of individuals offered access to their online medical records did not access that information because of patient privacy and security concerns.

Patient Privacy, Patient Data Access

Source: Thinkstock

By Fred Donovan

- The HIPAA Privacy Rule guarantees patient data access as well as patient privacy.  

While both guarantees are important, they can sometimes be at odds. The goal of HHS under the HIPAA Privacy Rule is to ensure patient privacy is protected, while facilitating the flow of healthcare information to legitimate sources. 

That tension is reflected in a recent study by the Office of the National Coordinator for Health Information Technology (ONC) about individual use of online medical records and technology.

Using National Cancer Institute survey data, the study found that 52 percent of US citizens were offered access to an online medical record by a healthcare provider or insurer in 2017, up from 42 percent in 2014. Of those who were offered access, 53 percent viewed their records at least once in the past year.

However, of the individuals offered access to online medical record, one-quarter did not access that information because of privacy/security concerns.  

Other reasons cited for not accessing online medical records included a preference to speak with their healthcare provider directly, not having a need to use their online medical records, not having access to the website, and no longer having an online medical record.

To help individuals access their health information, ONC has put together a guide on how to get and use health records.

“It’s important that patients and their caregivers have access to their own health information so they can make decisions about their care and treatments,” said National Coordinator for Health Information Technology Don Rucker. “This guide will help answer some of the questions that patients may have when asking for their health information.”

ONC said that an individual’s ability to access and use health information electronically is a cornerstone of the agency’s efforts to increase patient engagement, improve health outcomes, and advance person-centered health.

The guide informs patients and consumers about the value of health information and provides individuals with advice on how to:

• Get their health record, including offering tips through the process of accessing their records electronically

• Check their health record to make sure it is complete, correct, and up-to-date

• Use their electronic health records, such as sharing their records to better coordinate their care and using apps and other digital technologies to manage their health

ONC said the guide supports both the 21st Century Cures Act goal of empowering patients and improving patient access to their electronic health information and the recently announced MyHealthEData initiative.

Led by the White House Office of American Innovation and supported by ONC, the initiative originated from President Donald Trump’s executive order to promote healthcare choice and competition issued Oct. 12, 2017.

The executive order directed government agencies to “improve access to and the quality of information that Americans need to make informed healthcare decisions.” The order is part of a broader effort to increase market competition in the healthcare market.

The Trump Administration designed the MyHealthEData initiative to give patients more control over their healthcare information. Other participants in this effort include the Centers for Medicare and Medicaid Services (CMS), National Institutes of Health, and the Department of Veterans Affairs.

“CMS serves more than 130 million beneficiaries through our programs, which means we are uniquely positioned to transform how important healthcare data is shared between patients and their doctors,” said CMS Administrator Seema Verma in announcing the initiative on March 6, 2018.

“Today, we are calling on private health plans to join us in sharing their data with patients because enabling patients to control their Medicare data so that they can quickly obtain and share it is critical to creating more patient empowerment.”

The ONC guide that grew out of the MyHealthEData initiative is intended to educate individuals and caregivers about the value of online medical records as well as how to access and use their information. ONC also developed videos and fact sheets to inform individuals about their right to access their health information under HIPAA.

In addition, through the Trusted Exchange Framework and Common Agreement, individuals will be able to request access to their health information across multiple providers. Provider adoption and use of the 2015 edition of certified EHR technology, which includes application programming interfaces, will make it easier to electronically exchange health record data and patient-generated data to and from apps and devices.

Patient data access and privacy can work together if there are systems in place to securely share protected data. It’s up to the government, healthcare providers, business associates, and individuals to work together to ensure that happens.

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