Raising Awareness

Raising Awareness

How can we raise awareness about and encourage participation in Alzheimer's research?

Goal: Empower people from diverse communities -- those with Alzheimer’s disease and related dementias, their families and caregivers, healthy adults, clinicians, businesses, workers, and the general public -- to participate in research.

Ideas in this area might address:

  • What messages and education about clinical studies and research participation are needed to engage a variety of audiences
  • Where it would be helpful to deliver messages and education
  • How to best connect/match participants with research
  • How to better use technology and social media to facilitate participation
  • How to engage health care professionals to inform patients about research participation
  • Role of funders, organizations, policymakers in implementing

Raising Awareness

Submitted by (@natlefforts)

Provide logistical and financial support to physicians for communication about dementia and research

Examine ways to provide logistical and financial support to primary care physicians and their practices so that assessments, discussions, and care of patients at risk for dementia or with cognitive impairment or dementia can be enhanced. Work with the National Quality Forum and Center for Medicare and Medicaid Services (CMS) to see how to embed facilitating research recruitment as care quality criteria within ongoing, ...more »

Voting

12 votes

Raising Awareness

Submitted by (@natlefforts)

Create global recruitment villages

Facilitate the emergence of a federation of self-organized online recruitment communities (i.e., digital villages, disease forums). Develop effective partnerships between research centers and social media companies. Machine-learning algorithms could use social media data to identify potential research participants and concerned family members, with great care regarding privacy concerns and garnering proactive consents. ...more »

Voting

4 votes

Raising Awareness

Submitted by (@natlefforts)

Leverage electronic medical records-based decision support and messaging capabilities for point-of-care recruitment.

This could include: 1) Using personal health record portals to support direct, interactive messaging between providers/staff and research participants and their family members. 2) Integrating automated paging, kiosk-based messaging “waiting room” mini-videos to support recruitment at the point of care. 3) Seeing how electronic medical records data capabilities might be used to generate lists of potential recruitment ...more »

Voting

8 votes

Raising Awareness

Submitted by (@natlefforts)

Work with healthcare plans to build awareness of the importance of recruitment into clinical trials and studies.

1) Encourage healthcare systems and health insurance plans to use clinical trial awareness initiatives, evidence-based brain health resources and partnerships as an incentive and benefit for their beneficiaries/clients and subscribers. 2) Engage the Centers for Medicare and Medicaid Services (CMS) as a partner, examining such approaches as including clinical studies participation opportunities as part of the Star Rating ...more »

Voting

33 votes

Raising Awareness

Submitted by (@natlefforts)

Work with employer/ee organizations to convey the importance of participation in research

Discuss with employers and employee leadership how participation in or support of participants in clinical studies can be encouraged by an organization’s policy, including providing paid time off for employees who might become study participants or study partners. Ensure protections against discrimination for employees if/when they participate in clinical studies or serve as study partners for age-related cognitive function, ...more »

Voting

18 votes

Raising Awareness

Submitted by (@jeff.borghoff)

Recruit Existing Clinical Trial Participants to Campaign for more Participation

I am 53 and have younger onset Alzheimer's. I have been a participant in the Biogen Aducanumab clinical trial for 20 months. During that time I have had many conversations with my community of friends also living with younger onset Alzheimer's. There is tremendous value hearing a clinical trial story from people living with the disease and who are actively and joyfully participating in a clinical trial. I'm able to ...more »

Voting

97 votes

Raising Awareness

Submitted by (@kthlncnnll)

Increase Public Education and Awareness

Clinical trials are foreign to patients and caregivers. More education about the trials, what it means to be involved, privacy issues and ability to exit the trial at any time needs to be communicated more directly to the desired sample subjects. I am a volunteer Alzheimer's Association Community Educator. I always briefly discuss the trials and potential benefit of involvement. However, it is then left to the person ...more »

Voting

17 votes

Raising Awareness

Submitted by (@dvjones)

publicizing information

People are afraid of dementia. They don't know how to handle it. It also makes them feel like they don't want to see their loved ones in this condition. They don't understand it. No one tells anyone about it. We have a support group at the Assisted Living where Mom lives. I see and hear them when they first come in. Mom's minister called me and it was happening in his family and his own kids would not go to visit ...more »

Voting

13 votes

Raising Awareness

Submitted by (@leblancdb)

Facilitate Alzheimers CAREGIVER support group within faith based facility

As an advanced practice nurse trained in dementia symptoms, I am a volunteer facilitator of caregiver support groups. A local facility hosts our meetings in a peaceful Chapel with comfortable seating, tables, refreshments. I direct the conversation allowing each one to express their mental health issues and problem solve ADL issues. Participants care for their parents, spouses, and adult children. I refer each participant ...more »

Voting

6 votes