2018 SP&FCN Training

The 2018 SP&FCN training was held on Monday, June 11 – Wednesday, June 13, 2018 in Chicago, IL. 10 members of the SPEAC 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: