Patient Generated Health Data (PGHD) to Enhance SEER Data Collection

Principal Investigator:
Salma Shariff-Marco, Ph.D., Scarlett Lin Gomez, Ph.D.
Allison Kurian, M.D., Uri Ladabaum, M.D., James Brooks, M.D.
Funding Source:
National Cancer Institute, National Institute of Health
Funding Period:
Study Website:

With the potential to improve data on survivorship outcomes for cancer registries, we will conduct a feasibility study on collecting selected PGHD, specifically treatment adherence and patient-reported outcomes including HRQOL, symptoms and side effects, leveraging ecological momentary assessment (EMA) methods.  First, we will test the feasibility of collecting PGHD over two time points for a longitudinal view of patients’ personal experiences in adhering to cancer treatment regimens, and changes in patient-reported outcomes over time.  Second, we will develop and test the value of tolls for providing data back to patients via reports as a record of their experiences during treatment and/or transition to survivorship.  Third, we will understand the extent to which health care settings are collecting PGHD that could augment registry data and the ability to capture that data in registry records. We expect that this study will provide valuable data to inform the feasibility of not only improving the existing treatment data in population-based cancer registries but also extend the types of patient-reported outcome data available for understanding patterns, trends and disparities in cancer survivorship.


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