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)

Community education events

Utilize community events to increase health literacy (e.g., lunch and learn series, lay presentations, memory screening events, town halls). Build events for families rather than restricting to older adults. Offer tours of the research space after introducing concepts of research into the community. Address community concerns and barriers to participation; directly address elephants in the room. Feature local voices of ...more »

Voting

32 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)

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 (@cintipatty)

Going to rural communities where older people live

My husband and I have retired to Alcona County in rural northeast Michigan. The population in this county is the 7th oldest in the U.S. but we have such poor medical resources that very little is going on in the way of clinical trials. I am a retired BSN from U of M and personally know there are many retirees here who would gladly participate in research dealing with aging by filling out lifestyle surveys, diet diaries, ...more »

Voting

19 votes

Building Relationships with Local Communities

Submitted by

Famous to the community - Invest in local volunteer coordinators

There is famous and there is famous to the local community. Since all recruitment is local, meaning you have to go to a clinical site to enroll in a trial, the local community is the group of people who understand that your site is famous in Alzheimer's research. And famous to the local community is precisely the goal of just about all recruitment now. You don't need to be Harvard or Yale. You don't even need to have ...more »

Voting

14 votes

Building Relationships with Local Communities

Submitted by (@jim.mcaleer)

Partnership with Community Organizations

Local non profit organization have strong existing relationships with people at every stage of the disease as well as the "worried well." As trusted sources of information and support, these organizations are well suited to provide information and referral but do not always have the capacity. Partnerships with trial providers wherein the non profit hosts community educational events and experiences, designed to be ...more »

Voting

13 votes

Building Relationships with Local Communities

Submitted by (@caseym)

make caregivers understand the value of participation.

As a care giver to my husband, who has volunteered for multiple PPA studies, I would need to feel that their is some benefit to either my husband or to me as a caregiver, on donating more time. I am not talking about money, I am suggesting that if we could take away some useful information from participating then I would be more likely to sign him up. many caregiver feel lost, and an exchange of useful information ...more »

Voting

16 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