Patient Data Access News

ONC Issues Guidebook for Patient Access to Health Information

The guidebook reviews patient rights, tips and tricks, and uses for patient access to health information.

onc patient access to health information guidebook

Source: Thinkstock

By Sara Heath

- HHS and the Office of the National Coordinator for Health IT (ONC) has issued a new guidebook to assist patient access to health information. This playbook comes as a part of the HHS and CMS MyHealthEData initiative.

The ONC Guide to Getting and Using Your Health Records is an online and patient-facing document helping patients overcome the challenges they face in accessing their medical records. The guide reviews obtaining a patient health record, checking the health record for accuracy and completeness, and using health records and data sharing for better patient engagement.

This guidebook, in conjunction with the MyHealthEData initiative announced last month, supports HHS’s goals for better patient engagement. Patients become more activated in their own care and are empowered to make healthcare decisions when they can obtain access to their own medical records.

MyHealthEData and patient access to health data also aligns with the 21st Century Cures Act. Patient access to their own medical records is a measure of interoperability, HHS and ONC contend, as is the ability for a patient to send her own medical data to another healthcare provider.

“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,” ONC head Don Rucker, MD, said in a statement. “This guide will help answer some of the questions that patients may have when asking for their health information.”

READ MORE: Reviewing Patient Access to Health Data Under HIPAA Privacy Rule

Currently, patients face a number of challenges in accessing their own medical records. A June 2017 report from ONC noted that patients don’t always see a need to access their own medical records, highlighting a considerable lapse in patient engagement in their own care.

Additionally, patients often believe they do not have the right to their own medical records. There is a pervasive misconception that clinicians, healthcare organizations, and other medical stakeholders own medical records. In fact, HIPAA mandates that patients are the arbiters of their health records and have a right to access them at any time.

“According to federal law, you have a right to see and get a copy of your health record from most health insurance plans and health care providers, including clinics, hospitals, pharmacies, labs, and nursing homes,” the guide instructs patients.

The guide also offers a quiz to help patients learn more about their health data access rights under HIPAA.

Limited health data interoperability also poses a challenge, the guide continued.

READ MORE: Biden: Federal Action Needed for Patient Access to Health Data

“It can be a real challenge to get your health record if you’ve been cared for by multiple doctors in multiple places,” the guide notes. “Each one may have a different process for asking for and getting your record.”

The guide continues by reviewing the circumstances under which patients, family caregivers, and other authorized individuals can access a patient medical record. This list also contains instructions for doing so.

For example, patients should always go into the healthcare facility knowing their rights. This will empower them should they encounter a medical professional reluctant to share medical documents.

“If your provider says they can’t provide access to your health record because of HIPAA, tell them that both HIPAA and the Department of Health and Human Services (HHS) require them to give you access to your records,” the guide instructs. “This is your protected right under the law.”

The guide also details the purposes for obtaining medical records. Patient access to their own health data will help patients better understand their own health and conditions and arm them with the knowledge to engage in conversations about treatments with their providers.

READ MORE: How Patient Health Data Access Drives Patient Engagement

“It can also be empowering to have your record for your own use,” the guide explained. “Your health record can help you understand, advocate for, and manage your own health care — it can make you an expert on you.”

Additionally, patients with a thorough understanding of their own health and access to their records can better support patient safety initiatives.

“Once you’ve got your health record (also known as a medical record), review it to make sure that all of your health information is complete, correct, and up-to-date,” the guidebook noted. “This is important because you may have forgotten to tell your doctor something or they may have forgotten to write it down.”

The guidebook concludes by emphasizing the importance of sharing a medical record with relevant stakeholders. Patients may choose to appoint authorized individuals, such as a family caregiver, to access their medical records. Patients should also share medical records with other medical providers treating them.

HHS, CMS, and ONC have long advocated for patient access to health data. This principle has been a core aspect of meaningful use and MACRA and can be credited with the widespread adoption of patient portals. A 2017 ONC data brief showed that 80 percent of patients who accessed their own medical records found that access useful.

But patients still see challenges when accessing their medical records. Aside from misconceptions about patient rights to access, limited interoperability and underperforming technology serve as barriers.

Earlier this year at the annual HIMSS conference, CMS announced the MyHealthEData initiative to begin work on overcoming those barriers. This program calls on healthcare organizations, payers, and other providers to offer patients access to their medical records and to create the interoperable technologies necessary.

“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,” CMS Administrator Seema Verma stated at HIMSS. “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.”


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