RTI International Researcher Testifies Before U.S. Health IT Policy Committee on Patient-Generated Health Data

RESEARCH TRIANGLE PARK, N.C. — Jonathan Wald, M.D., director of Patient-Centered Technologies in the Center for the Advancement of Health IT at RTI International, testified about the importance of patient-generated health data and policy implications at the Health IT Policy Committee's Meaningful Use Workgroup during a special public hearing in Washington, DC.

Wald explained that patient-generated health data are health-related data—including health history, symptoms, biometric data, treatment history, lifestyle choices, and other information—created, recorded, gathered, or inferred by or from patients or their designees (i.e., care partners or those who assist them) to help address a health concern.

Wald testified that patient-generated health data was different from typical data generated in clinical encounters with providers in two important ways. First, patients, not providers, are primarily responsible for capturing or recording their health data. Second, patients direct the sharing or distributing of that data to health care providers and other stakeholders. In these ways, patient-generated health data complements provider-directed capture and flow of health-related data across the health care system.

"Patient-generated health data are not new; for decades, researchers and others have examined the use of various health information generated by patients," Wald said. "However, the volume and sources of patient-generated health data are rapidly increasing, producing more patient data and placing more demands on health IT to handle patient-generated health data in useful ways."

Wald based his testimony on a white paper published by RTI International, which focuses on literature reviews and interviews of industry experts. The paper explores the anticipated growth in patient-generated health data as electronic health records become more widespread and with advancing consumer use of technology for health.

The white paper was written for the Office of the National Coordinator of Health IT, who sponsored the meeting.

Materials from the hearing are available online at the Meaningful Use Workgroup: Past Meetings website.

Michael Shapiro, Douglas Johnston, Jonathan Wald and Don Mon of RTI co-authored the white paper.