2015 Patient Voice “GAPS”

2 What gaps are we seeking to address through the 2015 Innovation Impact award program?  Below are some examples of areas where progress can be made, gathered from listening to our patient and professional partners.  Has your organization identified a gap that is not on our list?  Share it with us and let us know how you intend to solve it.

  • INNOVATION:  How can we work together to enhance the patient experience of participating in clinical research from beginning to end?  What is the best way to help patients feel they are true “partners in research?”
  • IMPACTHow can we identify and include quality of life measures that will be meaningful to patients? How can we reach common ground around what metrics are “valuable?” What infrastructure or processes are needed to ensure these measures will be included in the development stage of a trial?
  • COMMUNICATIONHow can we better communicate clinical research results in a timely and effective manner so that patients and their families feel included and informed?
  • EDUCATIONHow can we educate patients and caregivers of the importance of their participation in clinical research and the impact it has on the development of new treatments? 
  • COLLABORATION:How can patient advocates and industry work together to initiate discussions early in the drug discovery environment so that research better reflects the needs of patients?
  • TRAINING: How can we increase the number of trained patients and patient advocates ready to participate in scientific discussions representing multiple disease states and broad geographic patient communities?
  • What additional gaps has your organization uncovered?