The goal of the Data Curation Study is to develop a Standard Health Record prototype for up to ten metastatic breast cancer patients. A Standard Health Record aims to provide a complete and accurate health record across all care locations to improve care and empower the patient. The study team will work with the patients enrolled in the Data Curation Study to:
1. Document their medical history
2. Collect retrospective longitudinal data for that patient from all organizations where he/she received care
3. Organize and integrate the data into a high quality medical record
The results of this study will inform development of a Standard Health Record data model for oncology patients and support subsequent studies to evaluate the effectiveness of a Standard Health Record in clinical decision-making and cancer research.
- Have been diagnosed by a physician with metastatic breast cancer
- Can be anywhere in treatment plan
- Be willing to share your health records confidentially for use in the project only
- Able to commit to 3 interviews over the course of 6 months
- Can be located anywhere, Boston preferred
- People with metastatic breast cancer
- Remote or in person
- 3 interviews lasting up to 2-hrs long each
- Any additional time outside of the 6 hours of interviews will be compensated at $50/hr
Receive: $500 (more if additional time requested)
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