Background
Sarcoma patients are asked to contribute their clinical and patient-reported data to many different initiatives. Patients and patient organizations often do not have access to the de-identified data, do not know how or if the data is used, and are not included on further research or other initiatives that stem from the data donated by the patient community or collaborations.
Moreover, academic institutions, government entities, and other nonprofit organizations usually “own” the data donated by the patient and are therefore the ones to determine who gets access to and how that data is used. Most often, access and use is limited to only that specific entity. Ethical data sharing, especially in a rare cancer like sarcoma with many different subtypes is beneficial to patients as it allows for the opportunity for more research across the sarcoma landscape. Only by pooling data from many patients, across different institutions, and from studies can there be enough statistical power to derive meaningful conclusions and insights in sarcoma, and importantly rare and ultra-rare subtypes of sarcoma where very few patients exist. Currently, sarcoma organizations and individual patients are housing data in some data platforms not tied to sarcoma, and most of which do not collaborate or work together. Even if the sarcoma community wanted to look across subtypes for specific research questions, it would be difficult because sarcoma data is so fractured.
The community has an opportunity to bring the data together which is something many in the sarcoma community have discussed but no one has done in a way that is now possible. To advance research and more and better treatment options, SFA is leading a sarcoma community collaboration to develop a central repository to combine health records, patient experience data, real world data, and potentially health claim data in one location across subtypes. This allows the patient community to monitor, be collaborators in sharing and providing access to, and become integrated in outcomes research utilizing patient-donated data.
This work will provide information to patients and ensure the patient voice is included in research projects.
Project Goals
- Advance sarcoma treatments to realize better outcomes for patients
- Increase accessibility for research
- Increase control over data usage, outcomes feedback
- Ensure the patient voice is included in research
- Provide outcomes to patients who contribute their data
