“Here.Us.Now” prompts the questions, “How can this be fixed?” and “What can I do to help?” Below are a few ways to learn more and get involved.

• Patients’ rights to full and automatic access to their own health data and the ability to determine how their data are utilized. Visit:
  • Consent to Research
  • Personal Genomes Information
  • Unreasonable people unite: John Wilbanks at TEDGlobal 2012
• The need for immediate sharing of data that is a result of taxpayer-funded medical research. Visit:
  • Opening Access to Research
• An increased focus on the potential of repurposing current treatments to addressother disease states. There are few incentives in place to allow this to occur. Visit:
  • The Learning Collaborative – a Unique Model for Getting Patients the Therapies They Need
• An increased focus on rare disease as an opportunity to learn more about personalized medicine. Visit:
  • Therapeutics for Rare and Neglected Diseases
  • The Global Genes Project
• Establishing a data-focused relationship between treatments and outcomes to allow a reduction of the annual $2.6 trillion U.S. health care spend. To achieve this, we must incentivize funding of accurate diagnostics for all diseases and comparative effectiveness research. Visit:
  • Kauffman:  Valuing Health Care
  • Comparative Effectiveness Research Funding