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.
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 educational events for professional health providers, and integrate education into existing CME-based training, particularly for primary care physicians in community health centers
My mom was in a Memory care facility for 3 years and I didn't have any connections to research, best practices, etc. I think that supplying a handout to family members and the option to be added to a data base when the patient is admitted to these facilities would be beneficial for all concerned.
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 »
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.
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 »
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 »
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 »
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 »
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.
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 »
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 »
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 »
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