According to the Office of the National Coordinator for Health Information Technology (ONC), Patient Generated Health Data (PGHD) are “health-related data created, recorded, or gathered by or from patients (or family members or other caregivers) to help address a health concern. PGHD include, but are not limited to health history, treatment history, biometric data, symptoms, and lifestyle choices.”
The data is collected and managed by the patient, and is sometimes integrated into the physician electronic health record (EHR). ONC is developing a policy framework that identifies best practices, gaps, and opportunities for progress in the collection and use of PGHD for research and care delivery through 2024.
The use of PGHD provides important information during care and delivers a more precise picture of the patient’s situation. It also helps with chronic diseases and recovery management. When data are collected through remote monitoring tools or nutrition and fitness apps like “Fitbit”, the patient’s health status can be determined from the times in between care encounters. It also strengthens the relationship between patient and provider. With a broader spectrum of information providers are able to create more targeted treatment plans.
But as bright as the future of PGHD might look, there are still some complex challenges that need to be addressed.
First of all, a functional and a technical infrastructure must be in place to support PGHD intake. Fitbits and other smart devices are for the most part not approved by the Food & Drug Administration for clinical use. Providers need to be able to review and manage PGHD. And there is also some concern about liability if inaccurate PGHD are used in clinical decisions and action steps based on the PGHD received. The open question is who is responsible for the accuracy and validity of PGHD?
Providers who incorporate patient-generated data into their clinical workflows need guidance, best practices, and training to minimize problems that may occur with PGHD implementation.
Privacy and safety is always a hot topic in the healthcare industry. Once patients have generated and delivered data to the clinician’s electronic health record, the confidentiality of sensitive health information under Health Insurance Portability and Accountability Act of 1996 (HIPAA) needs to be ensured.
With great innovations in the digital health technology comes great responsibility. Integrating PGHD into clinical use asks for coordinated efforts of guidance and best practices.
Contact us to hear more about HIPAA compliance and the confidentiality, integrity, and availability of patient’s protected health information in all formats: paper, oral, and electronic.