Monday, June 22, 2009

Just in time for July 4th, FasterCures signs the Declaration of Health Data Rights

by Kristin Schneeman, Program Director, FasterCures

What is the most important ingredient in the recipe to cure cancer, or Alzheimer’s, or Lou Gehrig’s disease? Battalions of highly-educated doctors and Ph.D.’s? Buckets of cash? An armament of high-tech lab equipment? The answer is none of the above – it’s you. All of us. Patients.

Each of us contains the information necessary to unlock the relationship of genetics, proteomics, behavior, nutrition, and environment to the emergence and, ultimately, the management of diseases. That information is contained in the data in our medical records; biological material such as tissue, blood, and DNA; and our biology as observed in clinical trials. By enrolling in clinical trials to test potential new therapies, providing tissue and blood samples, and allowing researchers access to our medical histories with appropriate safeguards, patients provide the critical information and resources without which the search for cures would grind to a halt.

Patients are also an increasingly important driving force in setting the medical research agenda and providing the capital needed to turn promising ideas into new treatments. What started as fundraising telethons and walks is rapidly expanding to patient-oriented groups using social media to conduct virtual clinical trials of experimental treatments; foundations participating in the design of trials that meet patients’ needs; and patient groups providing seed funding to companies to incent them to develop drugs for their particular disease.

In the words of a recent Forbes magazine article, “Patients are the new power brokers.”

A strong democracy needs informed, thoughtful, and active citizens. A strong healthcare and “health cure” system requires informed, thoughtful, and active patients – especially now, as the health system undergoes major reform, and as the use of information technology and electronic health records is being ramped up to improve the system.

FasterCures is pleased to join with other organizations signing on to the Declaration of Health Data Rights, which state that individuals have the right to their own health data, to know where data in their record has come from, to take possession of it in paper or electronic form, and to share it with others as they see fit. We hope this is an important part of a movement to empower all of us to become more engaged with our health, our care, and our cures. It can’t happen without us.

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