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
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
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.
Work with CAB Members to ensure ongoing community presence and responsiveness to community needs.
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 »
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 »
Approach Bill and Melinda Gates to chair a working group on building community. They have pledged money towards research. They have the expertise of reaching out as shown by their work in other cultures, where they have gone village to village to set up programs and networks of support.
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 »
Primary Care Physicians should have the knowledge and tools about clinical trials and research to advise a patient with Alzheimer's or a family history of Alzheimer's. At one time I was interested in getting genetically tested, but my doctor was not encouraging the idea.
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 »
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.
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 »
Increase flexibility in protocols by allowing selected components of the clinical studies to be conducted in convenient and familiar locations for participants