Last month, there were tears of joy at my house when I learned of the Patient-Centered Outcome Research Institute’s (PCORI’s) award for a Patient-Powered Research Network (PPRN) focused on Alzheimer’s disease and other dementias. The new award is part of the expansion of PCORnet, the National Patient-Centered Clinical Research Network, a collaboration of health data networks to conduct patient-centered health outcomes research more quickly, less expensively, and with greater potential impact.
With the new PPRN, Alzheimer’s disease patients and family caregivers, like me, can finally have a voice and take an active role in shaping research. This award ushers in a new era—shifting Alzheimer’s disease research from researcher-driven to patient-centered—to accelerate development of effective treatments, improve quality of care, and support family caregivers.
I was so eager to share this news that I spoke up at the July 27 meeting of the Alzheimer’s Advisory Council, the US Department of Health and Human Services body that created our National Plan to address this devastating disease. I said, “Imagine what we can achieve with patients, family caregivers, clinicians, health systems, and researchers working collaboratively.”
Speaking from Experience
For almost 20 years, I have been the healthcare advocate and family caregiver for my parents, both of whom have struggled with dementia. More recently, my father-in-law was also diagnosed with the disease. Over the years, through the lens of this experience and my life sciences background, I saw that the clinical research system had little interest in family caregivers—therefore missing out on valuable input from the most underutilized member of the patient’s care team.
Today, 5 million Americans suffer from Alzheimer’s disease, and predictions put that number at 15 million by 2050. Millions more care for them. There are currently no treatments proven to modify the course of this disease, which is devastating to patients and their families.
As an outspoken advocate for families of Alzheimer’s disease patients, I’ve been involved with PCORI from its beginning. Early on, PCORI staff set up a meeting with the Alzheimer’s Association, an organization in which I have been active for many years, to gain insight from the family caregiver’s perspective. I was invited to that meeting. Since then, I’ve attended many PCORI events, become a PCORI Ambassador representing family caregivers, and served as an advisor on several research projects.
When PCORI announced its first awards to PPRNs early in 2014, I was disappointed that none addressed Alzheimer’s disease and other dementias. When I learned that no such organization had applied, I started a campaign—sending emails and cornering people at meetings—to be sure there was a strong application for the next round. And it succeeded.
The recent award created the National Alzheimer’s & Dementia Patient & Caregiver-Powered Research Network (AD PCPRN), which will connect researchers and people who have, are at risk for having, or care for someone who has Alzheimer’s disease or dementia. The PPRN will focus on developing, conducting, and disseminating patient-centered dementia research. It puts together a phenomenal team led by USAgainstAlzheimer’s (USA2), the Mayo Clinic, and the University of California-San Francisco’s Brain Health Registry. It plans to promote collaborations that include other advocacy organizations and industry partners developing diagnostics and treatments for dementia.
This PPRN will enroll large numbers of individuals through existing web-based registries that collect measures of patient cognition over time and self-reported information, such as a patient’s or family caregiver’s quality of life and responses to interventions. The AD PCPRN will also refer individuals to clinical trials and facilitate patient-focused studies, including research aimed at reducing burdens on family caregivers.
My strongest hope is that the PPRN will be the catalyst to get everyone on the research and care continuum working together to find better treatments and ways to provide more targeted support for families. Alzheimer’s disease affects the whole family, so Alzheimer’s research requires a “family approach” to be successful. We need to show the world that patient–family caregiver–clinician–researcher collaboration leads to bigger, better advances in dealing with a growing epidemic.