Patients Want Their Data Shared

Patients also want to be:

  • Respected for their contributions to science and medical advances. Those contributions include samples from their bodies (biospecimens), information (data), experiences (input), and sometimes their very lives.
  • Protected from harm and misuse of sensitive data about themselves, their family, and/or their culture or ethnicity.

As long as we are respected and protected, we will participate in clinical research and learning healthcare systems so researchers can find better ways to treat and prevent diseases and medical conditions.

What & Who

This post focuses on data from past “legacy” cancer clinical trials. The Patient AdvocateProtectionCommittee in the Alliance for Clinical Trials in Oncology drafted a resolution to add the patient voice to the groundswell of support for data sharing.

Why?

  1. People who join cancer clinical trials are often asked to donate their tissue and data for future research.
  2. When patients give consent for research, they expect their information to be shared.
  3. Unfortunately, many hospitals, clinics, academic centers, or research groups will not release information to other researchers, even though patients gave their consent.
  4. This does not honor or respect patients who want to contribute to research.

Your Call to Action

  • Please read the resolution, sign on, and share it with your networks and organizations. While this resolution deals with cancer, its intent is to help all medical conditions.
  • Include patients in data sharing activities.

“Today, oncologists and cancer researchers realize that they can’t [advance cancer progress] alone… What’s required today extends beyond any individual or any individual discipline, beyond medicine itself… It requires somewhat of a change in mindset. It requires a lot more openness – open data, open collaboration and above all, open minds.

– Vice President Joe Biden, ASCO Speech

Thank you!

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