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Author: Noel Lloyd

Date: June 22nd, 2017

On May 23 and 24 in Washington, D.C., the Senior Patient and Family Caregiver Network held its first-ever training session for its patient and family caregiver advocates. The network is the first of its kind, and its purpose is to develop an older adult patient and family caregiver-led nationwide group of advocates with:

  • A Basic understanding of patient-centered outcomes research (PCOR)
  • An ability to develop research questions important to older adult patients and their family caregivers that will ultimately help inform research design, encourage broader participation, and produce meaningful health outcomes
  • A willingness to provide the patient and family caregiver perspective by participating in PCOR opportunities at the national or local level

The training session featured a two-day pilot curriculum to introduce participants to PCOR from patient, industry, payer, and research perspectives; the clinical trials process; the PCOR challenges for  Alzheimer’s disease, sarcopenia, atrial fibrillation, and pain; what PCOR looks like in practice. It also included interactive exercises on how to read/interpret an abstract and individual planning to get involved in PCOR.

“The purpose of this pilot training was to introduce our network participants to PCOR and to gather their input as we continue to develop the curriculum,” says Susan Peschin, MHS, President and CEO of the Alliance for Aging Research. “We are privileged to have an amazing group of advisors and advocates whose variety of experiences as researchers, patients and family caregivers, payers, and clinical developers will help us take the next steps as a network.”

This network will continue to grow, as the training is planned to take place annually with a new group of participants each time. Stay tuned to the blog over the next few months as we profile some of the network’s members.






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