Building Relationships with Local Communities

Building Relationships with Local Communities

How can study sites build trusting relationships in 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

Building Relationships with Local Communities

Submitted by (@localdiversegrp)

Participant relationship maintenance program

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

Voting

9 votes

Building Relationships with Local Communities

Submitted by (@localdiversegrp)

Demonstrate attention and commitment to participants

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.

Voting

10 votes

Building Relationships with Local Communities

Submitted by (@hinckleybob)

Employ Local VA Medical facilities

The VA provides 1741 domestic medical facilities with some degree of mental health and/or primary care provided to veterans and qualifying family members. Eight conditions are targeted in Mental Health, but not Alzheimer's. However, screening for dementia is offered, so could be a tapped as a source of recruitment for research. A cursory review of the attached report appears to include any efforts aimed at a large population ...more »

Voting

5 votes

Building Relationships with Local Communities

Submitted by (@localdiversegrp)

Identify Culturally-Appropriate Messengers and Outreach Channels

Using information from the community needs assessment and input from community partners, identify best-fit modalities for information delivery (messengers) and appropriate/effective communications channels for each of the targeted communities (e.g., for Hispanics, for men, for adults with MCI), to include face-to-face activities, radio, newsletters, faith-based events, etc. Identify community champions (spokespersons) ...more »

Voting

6 votes

Building Relationships with Local Communities

Submitted by (@localdiversegrp)

Identify community partners

Identify and meet with available support services for referrals and recruitment partners (social services, clinical services, behavioral health, assisted living facilities, faith groups, legal, Area Agencies on Aging, city Office on Aging, AARP, those living with dementia, etc.), with a view towards leveraging existing networks to reach vulnerable populations. Identify a minimum of 1 to 2 key stakeholder collaborators ...more »

Voting

20 votes

Building Relationships with Local Communities

Submitted by (@carmen2u)

Include multi-lingual caregivers on the study team

In urban areas where diverse non-English speakers are more plentiful, enlist the help of caregivers with such skills to better explain and enroll potential study subjects. The caregiver perspective is unique and can best anticipate and explain the questions that prospective subjects and their caregivers have. Combined with their non-English language skills, the study has a better chance of enrolling more diverse subjects. ...more »

Voting

12 votes

Building Relationships with Local Communities

Submitted by (@natlefforts)

Evaluate incentives

Pay attention to the development, testing and application of incentives for participating in research. A variety of approaches, such as compensation for lost time or wages at work, charitable donations, gift cards, and cost savings services, could be considered. Evaluation should examine both positive and negative implications of incentive strategies on participation behaviors.

Voting

25 votes

Building Relationships with Local Communities

Submitted by (@localdiversegrp)

Develop give-and-take feedback with healthcare providers

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 »

Voting

14 votes