Patient-First Health Data Initiative
Find or generate the right data. Get it to the right expert in time to act.
Patients can often obtain clinical notes, test results, and summary reports. It can be much harder to obtain the imaging files, pathology materials, sequencing files, and other underlying data behind those reports. These materials may be needed later for a second opinion, additional analysis, trial evaluation, or research. Some must be generated or preserved at a particular point in care and may not be available later.
At diagnosis and major decision points, help me understand what data I have, what else may be needed, and how to get it to the right expert in time to use it.
FCCT has published a whitepaper explaining the legal and practical issues. We have also drafted documents patients can use to ask hospitals, laboratories, and other providers to send their health data or available tissue directly to a clinical or research recipient. Other drafts address how recipients may use or share the data after receiving it and how organizations can participate in a pilot.
We are seeking patients, institutions, clinicians, researchers, and other partners to help improve and test this work. This is the first part of a broader effort to help patients access, preserve, and use their health data throughout their care.
Proposed Implementation Areas
This initiative focuses on reports, underlying files, and sample information from specialized cancer testing. Examples include tumor profiling and sequencing, functional drug testing, liquid biopsy and tumor monitoring, immune profiling, pathology, imaging, and information about stored tissue.
Patient access to specialized cancer data.
Define the reports, underlying files, and sample information patients should be able to obtain, preserve, and use throughout their care and for future research.
Guidance at key decision points.
Develop practical guidance to help patients understand which tests have been performed, what data and samples exist, what may still need to be generated or preserved, and what questions to discuss with their care team.
Tools for requesting and transferring data.
Draft and test documents patients can use to ask hospitals, laboratories, imaging centers, and other providers to send complete reports and underlying files directly to a clinical or research recipient selected by the patient.
Use in care and research.
Establish clear terms and safeguards for how transferred data may be used in the patient’s care or, under separate authorization, contributed to research resources available across the field.
These areas will be refined with patients, participating institutions, and the clinicians and researchers receiving the data.
FCCT does not provide medical care, order tests, or receive or store patient data. Initial work will focus on digital health data and information about stored tissue; physical tissue transfer will be addressed separately.
Deliverables
Whitepaper
A description of the problem, the applicable legal framework, supporting evidence, and examples.
Proposed change
A practical document, workflow, model letter, guidance, policy, or targeted legal change intended to improve patient access and data transfer.
Industry and professional endorsements
Documented support from health systems, clinicians, laboratories, researchers, and relevant companies.
Patient endorsements
Documented support from patients, caregivers, and advocates.
Together, these deliverables are intended to give decision-makers a clear proposal, supporting evidence, and documented support from the people and organizations relevant to implementation.
Collaborate With Us.
FCCT welcomes comments on the whitepaper, draft documents, and proposed implementation areas. We also welcome interest from patients, caregivers, institutions, clinicians, researchers, and other partners in helping shape or test the pilot.
Questions may also be directed to Poornima Parameswaran, CEO of Future of Cancer Care Today, at poornima@sijbrandijfoundation.org.