ME/CFS Patient-Powered Research Network

“Two things broke down the silos for dramatic advancement in AIDS research leading to rapid therapy development. The first was the collective intent of the patient community that came with a shared sense of urgency. The second was that the patient community once excluded from collaboration now was the catalyst for new drug discovery and development.” Dr. Freda Lewis-Hall, Chief Medical Officer, Pfizer We have a shared sense of urgency and together we are the catalysts for ME/CFS research and treatment. We are reaching out to individuals, local, state and regional organizations to help organize our community. Together we can become a unified, strong patient voice working together toward a common mission of safe and effective treatments that will produce greater results than individual organizations working alone. The Patient Centered Outcomes Research Institute (PCORI) is a non-governmental organization that was established under the Affordable Health Care Act.  PCORI was created to conduct research on effective health care and get this information to patients and physicians. This is called ‘comparative effectiveness research’ or CER. PCORI soon realized that there was no good foundation to conduct CER because hospitals used different record systems, doctors had access to different types of information and most importantly, the patient had little to say about anything related to CER. PCORI will build the necessary CER infrastructure by tapping into the most important partner in CER, patients. PCORI is interested in funding “patient networks that have a central goal of becoming an activated group of individuals who provide their own clinical and self-reported data for the purpose of conducting research studies that promise to improve decision making and outcomes for patients.”  $12 million will be distributed by the end of the year for up to 18 PPRN awards. PCORI describes the ideal PPRN as:

  • Includes patients linked by a common condition
  • Patients enthusiastic about participating in patient-centered outcomes research
  • Patients are interested and willing to increase the quality and quantity of information collected
  • Patients are interested and willing to be innovative in how this information is collected
  • The network helps disseminate information to increase awareness and representativeness\Patients participate in the function and governance of the PPRN

    Suzanne D. Vernon, PhD explains the PPRN

The ME/CFS community is fortunate to have two networks responding to this funding opportunity. The Solve ME/CFS Initiative has partnered with several individual ME/CFS patients and local, state and regional patient organizations as well as PatientsLikeMe® to form the largest patient-powered research network of ME/CFS patients in the country. The Open Medicine Institute is also responding to this funding opportunity and is partnering with many of these same individuals and patient organizations.

June 24, 2013