Sarcoma Community Data Project
Background
Sarcoma patients are asked to provide their clinical and patient-reported data to many different initiatives. Often, Patient Advocacy Organizations (PAO) are asked to support or collaborate on a project and outreach to their patients to ask them to share their data. Patients and 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 the data and how that data is used. Most often, access and use is limited to only that specific institution. 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.
There are no other entities more invested in bringing treatments to patients than patient advocacy organizations. PAOs have no other interest than to better the lives and outcomes for sarcoma patients. To that end, leveraging our patient relationships and trust to create a central data repository that can advance research is integral to realizing advancements in sarcoma. Furthermore, among other things, a central repository allows the sarcoma community to monitor, be collaborators in sharing and providing access to data, and become integrated in outcomes research utilizing patient-donated data. This will enable PAOs to provide information to patients and ensure the patient voice is included in research projects.
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. And in a way that only PAOs can. This is an opportunity to work collaboratively to combine health records, patient experience data, real world data, and potentially health claim data in one location across subtypes.
Collaboration
SFA will partner with sarcoma patient advocacy organizations to collect data in one central location enabling the entire community to have better control over patient data, reported outcomes, access, and accessibility. Organizations already having a registry will be able to donate to or connect their data with the central repository without giving up control of their registry and information. Organizations that do not currently have a registry will be able to start a registry under this data initiative.
As the coordinating organization, SFA will initiate a Memorandum of Understanding (MOU) with any organization wishing to participate in this data-sharing initiative. The MOU will define access to specific relevant sarcoma subtype data, any profit sharing from data usage by industry, and data transfer requirements (should SFA go out of business).
Project Goals
- Advance sarcoma treatments to realize better outcomes for patients
- Increase accessibility for research
- Increase control over data usage, outcomes feedback
- Advance the sarcoma community