Advisory Council February 2014 Meeting Presentation: Recruiting Older Adults into Research

02/03/2014

ADVISORY COUNCIL ON ALZHEIMER'S RESEARCH, CARE, AND SERVICES

Monday, February 3, 2014

 

Recruiting Older Adults into Research (ROAR)

Centers for Disease Control and Prevention
National Institute on Aging
Administration for Community Living

ROAR...

  • …aims to engage older adults, including those of diverse ethnic and racial backgrounds, to volunteer for participation in clinical research… (starting with Alzheimer's research)
  • …using Aging Services and Public Health networks as trusted sources of information…
  • …thereby helping to accelerate scientific discovery.

ROAR and Current Initiatives

  • National Plan to Prevent Alzheimer’s Disease
    • Action 1.B.3: Increase enrollment in clinical trials and other clinical research through community, national, and international outreach
    • Action 2.A.5: Strengthen state aging and public health workforces
    • Action 1.B.4: Monitor and identify strategies to increase enrollment of racial and ethnic minorities in Alzheimer's disease studies
    • Action 2.A.9: Engage the public health workforce on brain health
  • The Healthy Brain Initiative: The Public Health Road Map for State and National Partnerships, 2013-2018,
    • E-08: Promote appropriate partnerships and strategies to educate and increase local participation in clinical trials and studies on cognitive health and impairment.

ROAR Project Aims

  • Make it EASY: Simple call to action, using existing registry platforms
  • Engage trusted messengers: Involve the Aging Services and Public Health networks, who have high touch with diverse older adults and caregivers
  • Deliver simple, persuasive messages: Develop & test easy to use materials appropriate for Aging Services and Public Health
  • Measure impact: Use metrics built in to partner registries

 

Aging Services Public Health
Information & Assistance Community coalitions
Hotlines Health & Wellness Programs at Senior Centers & Nutrition Sites   Public health centers & clinics
Caregiver Support groups State/Local plans
Respite Educational programs
Aging & Disability Resource Centers Community health workers
Care Coordination, In-home Chore & Homemaker Programs Senior Health Officials/Public Health Administrators  
Senior Transportation & Home Delivered Meal Programs  

Partnerships across these networks and the Alzheimer’s Disease Centers at the local levels

Reaching Underrepresented Populations

Aging Services Public Health
  • 11,304,795 Total Clients
  • 2,879,521 Registered Services Clients
  • 25% of registered services clients are racial/ethnic minority  
  • 29.5% registered services clients below poverty
  • 37% rural
Survey of state health departments*:
  • 84% of agencies support health disparities or minority health initiatives
  • almost 3/4 work to address rural health issues
  • approximately 3/4 provide financial support to primary care providers in their state  
* Association of State and Territorial Health Officials (ASTHO) survey

Facilitated Connections Among Registries

  • ResearchMatch
  • Alzheimer's Prevention Regristry
  • Alzheimer's Association TrialMatch

Convened Thought Leaders

  • State Government:
    • Public Health Representatives
    • State Unit on Aging Representatives
  • Federal Government
    • CDC, ACL/AoA, NIA/NIH, HHS ASPE
  • Aging Services
    • Area Agencies on Aging
    • National Association of Area Agencies on Aging (n4a)
    • National Association of States United for Aging and Disabilities (NASUAD)
  • Public Health
    • National Association of Chronic Disease Directors (NACDD)
    • Association of State and Territorial Health Officials (ASTHO)
  • Research
    • NIA AD Center Education Core leaders
    • Resource Center for Minority Aging Research (RCMAR)
    • Alzheimer’s Disease Cooperative Study (ADCS)
    • Experts focused on recruitment of under-represented populations
  • Voluntary Health Organizations
    • Alzheimer’s Association
    • USAgainst Alzheimer’s
  • Registries
    • Research Match
    • Trial Match
    • Alzheimer’s Prevention Initiative

Developed Simple Call to Action

Finalizing Outreach Plan

ROAR Timeline

  • November 2013
    • Contact stakeholders: Invitations to thought leader meeting
  • December 2013
    • Identify sites for pilot testing materials
    • Develop sample materials for discussion at meeting
    • Thought Leader meeting
  • January 2014
    • Web page: PPT toolkit; Fact Sheet; User Guide
    • Begin pilot testing
    • Incorporate feedback
  • February 2014
    • Finalize plan for implementation during 2014
    • Implement plan

Future plans

  • Sustain ongoing interagency partnership
  • Build on momentum from ROAR collaborations to date (HHS Innovates and HHSIgnites Awards) and other current initiatives (NAPA, Brain Health)
  • Finalize action steps, messages and materials, roll out to interested sites
  • Engage additional partners, participating sites
  • Measure impact and revise strategy

ROAR Team

  • Project Co-Lead: Amy Wiatr-Rodriguez, AoA/ACL
  • Project Co-Lead: Jennifer Watson, NIA/NIH
  • Angela Deokar, CDC
  • Kate Gordon, AoA/ACL
  • Hunter McKay, AoA/ACL
  • Nina Silverberg, NIA/NIH
  • Jane Tilly, AoA/ACL

Return to

National Alzheimer's Project Act Home Page

Advisory Council on Alzheimer's Research, Care, and Services Page

Advisory Council on Alzheimer's Research, Care, and Services Meetings Page

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