There is more science available to cancer patients than what one care team can keep up with. New diagnostics, treatments, trials, and suppliers keep emerging, and when standard of care runs out, patients are usually left to figure out what else might be possible on their own.

Future of Cancer Care Today (FCCT) helps cancer patients and their families connect the dots. Our PhD-led team surfaces diagnostic and treatment options relevant to a patient's case, including those beyond standard of care, and finds vetted suppliers and providers who work beyond standard protocols. FCCT does not replace doctors or make treatment decisions. We create playbooks and curate resources to help families ask better questions, so they can walk into the next conversation with a fuller picture.

Free for patients.

RESOURCES FOR PATIENTS

Important to know.

Future of Cancer Care Today is not a medical provider. We do not diagnose, prescribe, or direct treatment. We provide a non-clinical support layer focused on information, education, and decision support, intended to complement your relationship with your care team. Some materials may be generated with the support of artificial intelligence and should be reviewed with your medical providers before informing any care decisions. All decisions regarding your care belong to you and your doctor.

SELF-SERVE PLAYBOOKS

updated regularly

A curated body of suppliers, clinicians, and research groups we have encountered through our work.

Listings are informational only. FCCT does not endorse, certify, or control these suppliers, and inclusion does not imply a referral or recommendation. Please verify details directly with the supplier and discuss any next steps with the patient’s care team.

SUPPLIERS AND CARE PROVIDERS

updated regularly

TEMPLATES

Example Therapeutic Ladder

New

Patient-First Release

One standing authorization for records, imaging, data, and tissue.

Learn more

Patient-First Data and Tissue Release

One standing authorization US patients can use to request or direct the release of records, imaging, test data, and available tissue to recipients they choose.

We invite patients, and the organizations that generate or hold their data or tissue, to use the release and share feedback on how it works in practice. This will help us make the form clearer, easier to process, and more effective for everyone involved.

Why This Form Is Needed

Patients can usually obtain clinical notes and summary reports. Obtaining the underlying materials can be more difficult. These may include original imaging files, pathology materials, sequencing files, laboratory data, and available tissue. They may be needed for a second opinion, additional testing, clinical trial evaluation, or research.

What the Form Does

  • Identifies who is authorizing the release and where the materials are held. The form includes the patient’s information, the authority of any personal representative, and multiple releasing institutions and departments.
  • Defines the records and data covered. This includes medical and billing records; laboratory, pathology, and imaging reports; original imaging files; electronic health information exports; genomic and laboratory reports; raw data files; and related assay and analysis information. The authorization covers all dates.
  • Includes available tissue and other specimens. Covered materials include pathology slides and tissue blocks, as well as blood, plasma, serum, bone marrow, and other biological materials.
  • Addresses sensitive information separately. The patient must initial the categories they authorize for release, including genetic or genomic, HIV/AIDS-related, mental health, and reproductive or sexual health information. Psychotherapy notes are excluded. Substance use disorder records covered by 42 C.F.R. Part 2 require separate consent.
  • Defines who may receive the materials. The authorization covers specified healthcare, laboratory, data exchange, and research recipients, as well as another person or organization identified by the patient. The recipient may tell the releasing institution where to send the materials.
  • Creates a standing authorization. Once the form is on file, an authorized recipient may request covered materials without obtaining a new patient signature for each request. The authorization remains effective for up to 99 years unless the patient revokes it or applicable law requires an earlier expiration.
  • Explains the limits of releasing physical materials. Tissue and other specimens can be released only when they remain available and release is permitted. Materials that were discarded or not preserved cannot be recovered. A release may also reduce what remains for future care or testing.
  • Includes standard authorization terms. These address purpose, expiration, revocation, possible re-disclosure, voluntariness, permitted fees, the right to a copy, governing law, and signatures. The form is intended to satisfy HIPAA authorization requirements under 45 C.F.R. § 164.508.

Requests remain subject to applicable law, availability, and institutional policy. The form covers the release of the materials. Later use or sharing by the recipient may require a separate agreement.

Materials move directly from the holder to the patient or chosen recipient. FCCT does not receive or store data or tissue and does not provide legal or medical advice.

Work with us.

If our work could be useful to you or your community, please reach out. There is no cost to patients or families for our help.

Patients and Caregivers

Whether you are newly diagnosed, facing progression, or trying to figure out what comes next, we may be able to help you think more clearly about the path ahead.

Clinicians, Researchers, Partners

If you are working in diagnostics, therapeutics, personalized medicine, or health technology, and believe patients need better support navigating complexity, let's talk about how our work could complement yours.

Funders

Future of Cancer Care Today is incubated by the Sijbrandij Foundation, and grew out of Sid Sijbrandij's cancer journey and lessons learned from the many other patients and families we work with.

Meet the FCCT Team

Director, Patient Connections

Bayli DiVita Dean, Ph.D.

Bayli is a scientist and science communicator dedicated to improving the lives of those diagnosed with cancer. She developed her expertise in cancer immunotherapy research at the University of Florida and in translating complex scientific findings into accessible language during her time at the American Brain Tumor Association. Bayli was also a fellow at the National Institutes of Health, Office of the Director, through the American Association for the Advancement of Science Science and Technology Policy Fellowship, where she addressed policy needs related to incorporating the public into clinical research and bioethical issues. Inspired by her mother's diagnosis with metastatic colon cancer, she now applies her caregiving, scientific, and communication expertise to provide information and compassion to clients of FCCT.

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Associate, Patient Information

Donnia Robins, MSc.

Donnia is a scientist with training in chemistry, public health, and pharmaceutical sciences. Before joining FCCT, she was an Early Stage Researcher in the AGePOP consortium, an EU Horizon 2020 program focused on medicines for special populations, including older adults. At FCCT, Donnia supports patient case research, resource mapping, and preparation of educational materials for patients.

Patients and families say that a 30-minute call with us often shifts how they think about what’s possible.