Value of Patient-Generated Health Data (PGHD)

Patients are at the center of healthcare, yet healthcare reform initiatives through federal and state programs are largely directed at providers and payers. These programs (e.g., accountable care organizations (ACOs), new payment programs) are targeted to help meet the "triple aim": improving the patient experience of care; reducing the overall cost of healthcare; and achieving and maintaining a healthier population of citizens. Since "99 percent of patient activity happens outside of the hospital or clinic, beyond the scope of the [electronic health record] EHR", it is evident that information collected directly from patients is increasingly important. While patients are willing to share this data with their clinicians, few are able to do so due to barriers, such as lack of user-friendly applications; patient portals not having the capabilities to accept PGHD; stand-alone applications not integrated into clinical information systems or not part of the clinician workflow; and clear understanding of the privacy of the data.

This briefing will:

  • Define PGHD
  • Demonstrate the value of PGHD
  • Review the key obstacles from a provider, organization and patient perspective

According to a National eHealth Collaborative Technical Expert Panel, PGHD is health-related data-created, recorded, gathered or inferred by or from patients, family, personal caregivers or designees to help address a health concern. Figure 1 shows the types of data PGHD can include.

Q1 Industry Brief PGHD

PGHD is not a new phenomenon. Patients have always recorded and shared some form of information on their health and wellness with their provider and other members of their healthcare team. For example, whenever a patient reports medical and family health history, that information is PGHD. When the patient describes a personal medication list or comments on medication side-effects, that information is PGHD. When the patient’s family caregiver expresses concern about recent new symptoms, that information is also PGHD.

Today, technology enables tracking of wellness data that can be shared with a provider via the internet or a patient portal that feeds an electronic health record (EHR). At home, monitoring equipment can keep a digital record of results that can be sent wirelessly to the provider or an intermediary data-holder without the patient ever interacting with it.

PGHD provided by patients and caregivers complements clinical data to offer a comprehensive view of an individual’s health. PGHD can improve the accuracy of data stored in an EHRas demonstrated in Geisinger Health System initiative that allows patients to provide electronic feedback on their medication lists' accuracy before a doctor’s visit. Simultaneously, that feedback option empowers patients and their caregivers to be active partners in their health and healthcare. When patients share their health goals (Figure 2) with the clinical team, they provide information that helps put their needs into context.

Q1 Industry Brief PT Context

Patients also use technologies, such as personal health records, portals and mobile applications to aggregate and disseminate data. This is particularly valuable when a patient sees multiple providers at different health systems that use EHRs from different vendors. As an example, Figure 3 describes the different perspectives and priorities for providers and breast cancer patients.

Q1 Industry Brief Fig 3

PGHD has been proven to reduce readmission rates, hospitalization days, and lower cost. The Care Beyond Walls & Wires pilot project through the Northern Arizona Healthcare system investigated new care delivery models that utilized mobile technologies. Through the use of mobile devices and the application of secure texting they were able to:

  • Decrease readmissions by 44%;
  • Decrease in average number of days hospitalized by 64%; and
  • Decreased average total charges by 72%.

Patients are now using self-monitoring devices and tools to improve their health, which is a welcome sign for providers – especially those participating in accountable care organizations. However, patients are willing to share the results with providers only if they trust that this information will:  be private and secure, improve their care and lower the cost of their care. As providers accept more financial risk, self-monitoring devices can help keep the patient: living healthier, and longer, while also, preventing or delaying an acute episode of care.

There are many concerns surrounding the use of PGHD from the clinician, organization and patient perspectives.  Figure 4 depicts such concerns:

Q1 Industry Brief Fig 4


Providers and patients must have a shared understanding about what information would be most valuable, how data should be shared and what will happen after they share the data.  Without this understanding, unrealistic expectations could develop and easily lead to unexpected consequences for both patients and their providers.  When PGHD capabilities are implemented properly, including having an established set of policies and procedures in place for handling PGHD and maintaining transparency about the use of a patient’s information, concerns are addressed and potential liability may be reduced and mitigated.

PGHD can be a valuable tool to improve the patient experience of care; reduce the overall cost of healthcare; and achieve and maintain a healthier population.  Patients can engage in innovative preventative efforts with the use of technology. In addition, patients can be engaged using telemedicine to have an encounter with their provider, often when not previously possible due to distance and other constraints. Information collected directly from patients is important; the process must be user-friendly, trustworthy, and secure, with minimal disruption to the healthcare organization.  With clear policies and understanding by the provider and patient of the processes around PGHD initiatives, small and large healthcare organizations, patients, caregivers and families can benefit from the value of PGHD.   


HIMSS Center for Patient and Family-Centered Care

HIMSS Patient-Generated Health Data Task Force

HIMSS Privacy and Security Committee

HIMSS Clinical and Business Intelligence Committee

HIMSS Staff Liaisons

For questions about this briefing, please contact:

Mary Griskewicz, MS, FHIMSS, Senior Director, Healthcare Information Systems, HIMSS North America |

Ian E. Hoffberg, Manager, Healthcare Information Systems, HIMSS North America |

Jeff Coughlin, Senior Director, Federal Affairs, Government Relations, HIMSS North America |

Richard Hodge, MBA, MPA, Senior Director, Congressional Affairs, Government Relations, HIMSS North America |

Related Documents: 
PGHD, Data, Patient, Consumer, Government