28 hours ago What are patient-generated health data? 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 •ymp s toms • biometric data ... >> Go To The Portal
The diffusion of digital tools has led to a significant growth of patient generated health data (PGHD), defined as health-related data created, gathered or inferred by or from patients and for which the patient controls data collection and data sharing.
EMPOWER-H is an interactive Web-based disease management system integrated with the electronic health record. Study explored how home BP data gendered by patients with uncontrolled BP influenced clinical decision making. EMPOWER-H significantly improved the usage of patients’ office-measured and home-monitored BP in patient care.
1. Patients, not providers, are primarily responsible for capturing or recording these data. 2. Patients decide how to share or distribute these data to providers and others.
Patients decide how to share or distribute these data to providers and others. Examples of PGHD include blood glucose monitoring or blood pressure readings using home health equipment, exercise and diet tracking using a mobile application, and questionnaires such as screening, medication adherence, risk assessment, and intake.
The ePROs in Clinical Care toolkit provides evidence-based guidelines and strategies for the use of PROs that are collected electronically, rather than through traditional pen-and-paper methods.
To promote the collection, integration, and use of PGHD in clinical care, the Agency for Healthcare Research and Quality (AHRQ) developed a guide that has evidence-based, practical steps for implementation.
Providers may be hesitant to accept PGHD because they fear an influx of information that might interfere with their ability to deliver quality care. Such providers may be concerned that they will have the burden of reviewing large amounts of data, leading to increased liability and unrealistic patient expectations. Specifically, there are concerns about providers being held accountable for information that was not received or reviewed in a timely manner and information that may require an urgent response. Additionally, some providers have expressed concern about the financial impact of PGHD including the use of staff and physician time for reviewing, processing and analyzing the data and potentially integrating it into the EHR.19
Concerns may include whether their doctor or her staff has received or seen the data the patient sent and if they will confirm receipt; whether the information sent was saved in the patient’s chart; whether the information was shared with his or her provider or family members as appropriate; whether the information was securely received and stored; and whether the patient generated data is valued and well-received by their doctor.20
In 2011, ONC identified PGHD as an important issue for advancing patient engagement and initiated a series of activities to gain more information about its value and approaches to implementing it.
All stakeholders need to be assured that PGHD is private and secure . Authentication of the patient (or caregiver if that person is submitting information) is critical to ensure that information can attributed to him or her with confidence. The issues identified in the provenance report, mentioned above, will need to be addressed. A method of linking specific information to its source will be important in tracking data as it moves from system to system, particularly from patient-controlled sources to provider EHRs, so that the integrity of the data can be ensured.21 There could be a need to address patient authorization for secondary sharing of PGHD, if the patient prefers that the data not be shared with other providers or for other purposes. The identity of and authorization for providers and staff receiving or accessing the information needs to be established. Transmission must be secure; encryption may be desired.22
Health care organizations have started accepting some PGHD in recent years. The specific purposes and approaches vary, and are driven by clinical priorities. Here are a few documented examples.6