Include individuals from the audience of interest in the design of the study and messaging, to best inform outreach.
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
Involve populations of interest in the design of the trial, to help address issues such as disclosure of plaque or genetic status, number of screening steps before enrollment, open label status, etc.
Relax exclusion and inclusion criteria, including documentation requirements when possible, to permit increased diversity in participant characteristics, and thus less ‘restricted access’ to research.
Increase flexibility in protocols by allowing selected components of the clinical studies to be conducted in convenient and familiar locations for participants
For individuals who fail to meet entry criteria for a study, offer other research opportunities so that there are no ‘closed doors’ to those who express an interest in research.
Develop reasonable, culturally-appropriate, and value-driven incentives for research participation (i.e., consider direct payment instead of reimbursement for participant costs with cash or gift cards).
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.
Gather existing data on the local and targeted community, including: available CMS data on AD prevalence by county level; census data on race, ethnicity, education, religion, and geographic distributions; publicly available community health assessments. Complement data with qualitative reports to account for individuals with low health-seeking behavior.
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 »
Attend community events as guests (not speakers) to learn more about the community and its leaders/stakeholders. Host presentations to introduce your organization to the local community, and the proposed tactics and tools for outreach. Develop an effective communication strategy to support ongoing, bidirectional flow of information with local community. Work with community partners to prioritize needs and develop responsive ...more »
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 »
Develop a document with key information about the impact of AD in each of the targeted communities, and information about the research project for lay and for professional audiences. Develop a listing of local media outlets (e.g., minority-owned or -focused media outlets and publications, local television stations, rural newspapers or radio shows, support groups, church gatherings, health fairs and events). Develop and ...more »
Leverage a broad spectrum of interactive communication technologies, particularly for rural populations and individuals living alone.
Ensure that materials are linguistically accessible by leveraging centralized translation services that may be modified or approved by local community champions.
Work with local partners to develop realistic goals for recruitment, to achieve buy-in and thus support to accomplish these goals. Recruitment goals must be realistic and attainable but also meet the standards of scientific rigor (i.e., power) or the results cannot be stated with certainty, which does not serve the community well. Recruitment goals should be supported by an operationalized plan that involves community ...more »