Patients Gain Control of Their Health Data

Data provenance and EHRs: The significance of patient-generated health data (PGHD).

Electronic health records (EHRs) Meaningful Use requirements, Stages 1 and 2, empower patients to become more involved in their own care. For example, per Meaningful Use requirements, patients must be able to view online, download, and transmit their health information under HIPAA standards 170.210(f) and 170.204(a). Such patient engagement is meant to improve healthcare outcomes. To give patients further control, consider using Patient Generated Health Data (PGHD).
PGHD are defined as “health-related data that includes health history, symptoms, biometric data, treatment history, lifestyle choices, and other information created, recorded, gathered, or inferred by or from patient or their designees to assist them with their health concerns.” Examples might include blood glucose monitoring or blood pressure readings using home health equipment, or exercise and diet tracking using mobile apps. Patients, rather than healthcare providers, are primarily responsible for capturing or recording their data and for deciding how to share or distribute it.
Types of PGHD include:

PGHD Types Description
Patient Proxy Measures vital signs by means of a device and recorded by the patient (e.g., temperature, blood pressure, blood glucose, and weight)
Self–reported Recorded by the patient or family member about the patient’s lifestyle data (e.g., caloric intake, diet, exercise, hydration, medication adherence, ability to perform activities of daily living)
Self-reported Quality of Life Data Recorded by the patient’s family or a patient proxy

To incorporate PGHD with your practice management, develop a strategy and educate staff, patients, and patients’ families about the ways they can provide health information, as well as the benefits of doing so. Specifically, greater granularity and specificity of documentation can improve patient safety, quality of care, and clinical quality measures.
Patients may gather supplemental data and record changes in their health condition using smart phones, tablets, and online patient portals. PGHD helps to provide a comprehensive picture of the patient’s signs and symptoms, and changes in his or her conditions occurring outside of the traditional clinical environment. PGHD also provides relevant information for preventive and chronic care management, and allows a provider to be more prepared for a patient’s visit because the patient’s health information is available before the encounter.
When the patient transmits or shares data with the healthcare provider, and when the provider reviews the PGHD to assist in formulating the patient’s care plan and documents the information in the patient’s electronic record, the PGHD become part of the practice management EHR, and are HIPAA compliant.
Electronic document management is a part of every EHR. Everything from email, financial records, legal records, website content, PGHD, and traditional provider-generated information are included. All data is considered an asset that can be managed and leveraged to improve patient outcomes and quality of care.

Possible Challenges for PGHD

PGHD involves health information technology standards, which include RxNorm for medication terminologies and LOINC terminologies for laboratory results. These clinical terminologies are required for PGHD data integrity. The standard requires the data to be tagged and the source of the PGHD to be provided in such a way that it’s consistent across systems (i.e., data provenance semantic or semantic interoperability). Data provenance (the process of tracing and recording the origin and movement of data) is critical for providers to trust the data that is received from patients, and patients’ devices and applications.
Another concern for EHRs that capture PGHD is the ability to store the status of the information, such as “not reviewed” or “reviewed.” PGHD status and workflow may not be consistent across different systems. For instance, how are providers notified when their patients’ PGHD arrives for review? Are you able to determine the data priority to alert the providers whether the data has a low, medium, or high priority? It’s also critical that when PGHD arrives, it cannot be altered or modified.
There are barriers related to data provenance of the EHR. Some EHRs cannot capture the origin with sufficient granularity to meet a provider’s expectation related to PGHD. There is no uniformity among data provenance systems to determine the origin of the information (e.g., who created, received, and shared the data, whether the data were integrated into another system, and whether shared data were reconciled).
Vernessa Fountain, RHIA, CTR, is the health information management consultant presenter at Caban Resources, LLC, and director, health information management/travel consultant at Healthcare Resource Group; former health information operation manager at Methodist Hospital of Arcadia, former adjunct instructor at East Los Angeles Colleges; and a former interim director, health information management, medical records director, and coder manager at Los Angeles County University of Southern California. Fountain was also a former cancer registrar at Los Angeles County University of Southern California and a former bone marrow transplant cancer registrar, Hoag Presbyterian Hospital of Newport Beach, Calif. She is a member of the Chino Hills, Calif., local chapter. She can be reached at:

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Renee Dustman, BS, AAPC MACRA Proficient, is managing editor - content & editorial at AAPC. She holds a Bachelor of Science degree in Media Communications - Journalism. Renee has more than 30 years' experience in journalistic reporting, print production, graphic design, and content management. Follow her on Twitter @dustman_aapc.

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