New guidance aims to improve representation in Alzheimer’s research

Key takeaways:

• The paper is centered around the importance of public and participant involvement in Alzheimer’s research.
• The authors updated language to recognize exclusion, promote inclusion and be globally relevant.

All stages of research on Alzheimer’s disease and related dementias should include increased public and participant involvement so the benefits are seen across diverse populations, according to a position paper in Alzheimer’s & Dementia.

The paper was led by the Partnering with Research Participants Professional Interest Areas of the Alzheimer's Association International Society to Advance Alzheimer's Research and Treatment. The authors include researchers and community members from the United States, Netherlands, Ireland, United Kingdom and Australia.

“The publication aims to advance public and participant involvement in research within the dementia field, in order to ensure that the priorities and outcomes of research apply to those most impacted by the disease,” Claire Sexton, DPhil, senior director of scientific programs and outreach at the Alzheimer’s Association, told Healio in an email. “The publication offers recommendations for best practice, spanning from starting early, offering training and demonstrating long-term commitment.”

Sexton and colleagues defined public and participant involvement (PPI) as “conducting research with or by the public; rather than to, about, or for them.”

“PPI involves a collaborative relationship, rather than only interacting with participants to collect data,” they wrote.

This collaboration, they believe, could help inform health and social policy as well as provide clinical solutions to treat and prevent AD and related dementias (ADRD).

The authors first reviewed language and key terms apropos for ADRD research, making adjustments when necessary to promote inclusiveness and ensure global relevance.

They defined a person living with or affected by dementia as an individual diagnosed with or at risk for developing the condition and refined the concept of marginalized communities as groups either underserved or under-engaged in ADRD research or in health care settings due to sociodemographic factors.

With the goal of ensuring effective integration of PPI into the research process, the authors offered seven steps:

• identify and prioritize research topics and goals for clinical trials involving dementia;
• ensure PPI members are involved with the design of research proposals and methods;
• promote research conduct and management consistent with PPI input, including problem-solving and recruitment;
• ensure PPI members are given the opportunity to provide input into study designs, analysis, outcomes and conduct;
• publish and present PPI-led research in scientific journals and at conferences to amplify the voices and perspectives of PPI members;
• incorporate PPI members’ lived experience when implementing the study findings; and
• assist researchers in evaluating and documenting PPI members’ influence on the research process and outcomes.

Applying PPI will require “substantial investments in resources, relationship building, funding and time,” the authors wrote. However, the perspectives of PPI members “can in turn improve representation of diverse populations within studies,” Sexton noted.

“Our shared goal for ADRD research is best captured by the perspective of a community member co-author: ‘We want to see ADRD research accelerate and provide meaningful benefits to their lives, the lives of their loved ones, their children, and their communities. We seek to be seen, valued, and treated always as a person first,’” Sexton and colleagues concluded.