2018 SP&FCN Training

The 2018 SP&FCN (now called Talk NERDY To Me) training was held on Monday, June 11 – Wednesday, June 13, 2018 in Chicago, IL. 10 members of the Senior Patient Engagement Advisory Council (now called Talk NERDY to Me Advisory Council) attended and aided in the training of 21 senior patients and family caregivers with a focus on Alzheimer’s disease, sarcopenia, atrial fibrillation, and chronic pain. The training expanded their influence in aging-related health research and educated them on research advocacy.

The training was highly successful:

  • 1 participant became a member of the Alzheimer’s Association’s Early Stage Support Group National Team and is speaking at the 2018 Alzheimer’s Association’s Chicago Walk.
  • 2 participants worked together to build out their list serv for patients including providing webinars on patient-centered outcomes research.
  • 1 atrial fibrillation patient, and former cardiac surgeon, served as a reviewer on an Alliance for Aging Research physician tip sheet on atrial fibrillation.
  • 1 atrial fibrillation patient became a patient adviser to a PCORI/American Heart Association-funded project on shared-decision making.
  • 1 participant became a member of the Peer Review Medical Research Program (PRMRP) of the Congressionally Directed Medical Research Programs (CDMRP) for the Department of Defense.
  • 1 couple became active in understanding more about the clinical trials process and coverage issues for post-market studies.
  • 5 participants are currently in the application process to become a PCORI Merit Reviewer and several participants have applied to become a PCORI Ambassador.
  • 1 patient with chronic pain is applying for positions to represent the patient voice at the FDA, DOD, and PCORI.
  • 1 participant, who is a family caregiver to someone with Alzheimer’s disease, applied to be a patient representative for the FDA.
  • 1 patient with sarcopenia and atrial fibrillation reached out to a local chapter of a patient advocacy organization to get involved in clinical trial education.
  • 1 participant is currently in the application process to enter a clinical trial.

Training resources: