Get your reports, raw data and sample details
Keep the originals, request the missing pieces, and confirm they actually reach the next person.
1. Make one folder for the originals
Collect these as they become available:
- Pathology and molecular-testing reports.
- Scan reports and the actual imaging files, not just screenshots.
- Treatment names, dates, doses and reasons for stopping.
- The current medication list and care-team contacts.
- Sample identifiers, storage location and the process for requesting a transfer.
Keep a separate one-page summary. It is an index to the records, not a replacement for them.
2. Ask for the files the next team needs
A PDF report is the interpretation. The underlying sequencing data may be separate. A researcher or lab might request FASTQ, BAM/CRAM or variant files; ask which files they can actually use before collecting enormous downloads.
Use this request with the hospital or lab:
Please send me electronic copies of my pathology, molecular-testing and imaging reports, plus instructions for obtaining the underlying imaging and sequencing data you maintain. Please list available file formats and any charges. For tissue, please identify what material remains, where it is held, and the process for an authorized transfer to another lab.
US HIPAA rights generally cover access to medical records held by covered providers and plans, with exceptions. That does not automatically mean every lab must create a new data export or release all tissue. Ask for the applicable policy if a request is refused.
3. Track the handoff
My sequencing order went by fax. A good test is no help if the order never arrives.
Use a simple tracker: item · sending office · receiving office · requested date · confirmed received · next action.
After an order or transfer is sent, confirm receipt with the receiving team. If it is missing, find the named person who will resend it. Keep the confirmation.
4. Share a copy, keep the original
Check who can access your files, how long they are retained, and whether the service can reuse them. Use the recipient’s secure upload route. For a family member, arrange the required permission rather than sharing a login.
AI can help organize the records. Check its summary against the documents before sending it to a doctor.
