Research shows that involving older adult patients in decision-making about their healthcare leads to better patient outcomes and satisfaction. Older adult patient and family caregiver engagement in research is more critical than ever to the Alliance’s overall mission.
With support from the Patient-Centered Outcomes Research Institute (PCORI), the Alliance created the Senior Patient and Family Caregiver Network (SP&FCN) to train a new group of older adult patients and family caregivers each year on:
- Patient-centered outcomes research (PCOR) and the clinical trials process;
- How to develop research questions that are important to older patients and their family caregivers; and,
- How to find PCOR opportunities and encourage others to do the same.
We then help get them involved in public and private advisory roles on clinical trial review committees, IRBs, and other research, policy, and health education-focused opportunities.
In 2017 and 2018, our disease areas of focus included Alzheimer’s disease, sarcopenia, atrial fibrillation, and chronic pain. These disease areas of focus may change or expand in future years to additional conditions that align with the Alliance for Aging Research’s mission.
At the core of the network is the Senior Patient Engagement Advisory Council comprised of patients, researchers, payers, and industry representatives who have been instrumental in shaping the training and engaging directly with network participants.