One of the priorities articulated by leadership of the Department of Health and Human Services (DHHS) through its 2015 Interoperability Roadmap was to create a reliable and learning public health data system that would include data generated directly by patients. Patient Generated Health Data (PGHD) can be used to improve the quality of care, to extend research beyond the clinical encounter, to support behavioral interventions, and to add depth to surveillance activities. In its review of “Connected Health” the President’s Cancer Panel described how new mobile technologies and patient portals could be used to (a) collect data at multiple points over time, and (b) to give value back to patients by providing them with a summary of their own contributed data for management of their own care. As part of NCI’s effort to advance the science in this area, the branch is providing technical oversight for a series of pilot studies funded through the Surveillance, Epidemiology, and End Results (SEER) Program’s Rapid Response Surveillance Studies initiative. The studies aim to identify promising methodologies for collecting PGHD as a complement to traditional SEER registry data.
The specific focus of these pilot studies is on patient adherence, especially their personal experiences with adhering to prescribed treatment regimens. Treatment adherence is vital for achieving important health outcomes such as disease-free survival and improvement in quality of life. However, little is known about what causes patients to be non-adherent. Establishing a complementary method for gathering data related to adherence directly from patients at multiple points in time will be useful for addressing these issues in future research and for monitoring the reliability of treatment protocols in the future.
The following four sites have been funded to carry out these pilot studies:
- Cancer Prevention Institute of California (PI: Salma Shariff-Marco)
- Louisiana State University (PI: Edward S. Peters)
- University of Iowa (PI: Elizabeth Chrishilles)
- Wayne State University (PI: Felicity Harper)