My name is Jim Taylor and I am a care partner for my wife Geri, who has mild Alzheimer’s disease and has been a participant in the Biogen Phase One trial of aducanumab for three years. Although not statistically valid, when the dramatic Phase One results were announced, reporting significant slowing of cognitive decline, we anticipated that the Phase Three trail (Biogen moved directly to phase three) would be fully enrolled ...more »
Building Relationships with Local Communities
Goal: To increase recruitment and retention of participants into Alzheimer’s and dementia research at the local level, focusing on inclusivity and diversity in age, race, ethnicity, sex, education, income, urban-rural demographics, and cognitive status (asymptomatic, MCI, AD and related dementias).
Ideas in this area might address:
- Planning for diversity and inclusion
- Building and sustaining relationships with community partners
- Community collaboration on research design
- Study design to facilitate participation
- Overcoming barriers
- Systems and infrastructure to support inclusive outreach
- Role of funders, organizations, policymakers in implementing
Use Area Agencies on Aging to connect with people at the community level who might be willing to participate in research. These entities have the trusted connections/relationships necessary to help encourage people to sign up, and encourage others to do the same.
I recommend creating dementia support groups. Many of us are skidish about trials because they often involve untried medications. It’s also very difficult to get our family members to agree to do anything apart from what is advised specifically by their doctor. Meeting in groups where all kinds of behaviors, coping skills, and options are discussed would make me feel more comfortable about steering my husband in one ...more »
People struggling with poverty can be a difficult group to access for studies for a variety of reasons. One of those is the difficulty they face if their normal modes of transportation are unreliable or incompatible with appointment times. If the study arranges and pays for Uber, Lyft, or taxi service allows the study participant to take the least amount of time away from other responsibilities, and reduces a potential ...more »
Most studies appear to require participants to live geographically near a study site. This should allow the leveraging of local partner organizations to get the word out to their constituents via email and social media. These partner organizations could range, for example, from United Way to religious institutions (churches, mosques, temples, etc), community groups, non-profits (museums, food banks, etc.), and even small ...more »
Consider offering individualized research feedback at the end of the study (or at regular intervals), such as z-scored cognitive data, so that participants may understand how they have performed.
Provide participants with individualized and genuine attention and demonstrate commitment to ongoing outreach. Enlist a research navigator, ideally from local or targeted community, to assist with recruitment, and assist participants through all phases of screening, enrollment, and research.
Identify goals for the participant relationship maintenance program (e.g., monthly contact to show continued appreciation), and strategies to accomplish (e.g., luncheons, personal notes). Host at least annual events summarizing research and thanking current research participants and their families / kin structure
Develop strategy to evaluate and reduce implicit bias in the workplace: Assess and quantify implicit bias at the academic and community research sites: operationalize the metrics and the approach to meet this goal. Assess diversity of study staff, researchers, and principal investigators. Identify and provide resources to facilitate this assessment. Identify existing resources for cultural competency training at the home ...more »
Identify ways to expose study staff to life with dementia in the target community (e.g. Wash U Duo Program). Identify ways to include those living with dementia on the study staff, Advisory Boards, and local engagement teams.
Build on targeted advertising and popular social media platforms to engage families and communities about Alzheimer’s and dementia, particularly to address local communities’ fears or myths.
Work with healthcare systems and providers to create customized research referral links and alerts through the electronic health record (EHR) system. Provide feedback to primary care providers regarding their patients who are enrolled in studies, and updates on scientific advances. Develop strategies to include providers in the planning of research studies so that they are partners, not just potential sources of referrals. ...more »
Build time and resources for community engagement, marketing, outreach and education into recruitment plans and budget during grant-writing phase.
Reach out to trusted advisors and potential participants. Build a contact database of community organizations, physicians, and individuals to facilitate regular correspondence. Develop a regularly scheduled email or e-newsletter campaign to provide educational and event information on cognitive health, dementia, and clinical trial topics. Create regular (e.g., quarterly) information sessions on research opportunities ...more »
Utilize multi-media and geofencing technology when/where possible to deliver dementia-related and clinical trial training to individuals and their families. Ensure education-based technology is user- and mobile-friendly.