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

Media Blitz

My brother and myself were the caretakers of my mother. Who passed away from this awful disease last year. Additionally, I worked in a long term nursing facility for three years caring for many residents with memory issues. Therefore, the irradiation of this disease is very close to my heart. I feel an all out Media Blitz should occur and not by social media but by T.V. How many times have you seen an ad or infomercial... more »

(@natlefforts)

Raising Awareness

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 »

(@dvjones)

Raising Awareness

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 »

(@natlefforts)

Raising Awareness

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 »

(@peterj)

Raising Awareness

Hodges' Care Domains Model

Hodges' model is a generic framework that facilitates problem solving, assessment and reflection. Developed in healthcare the model can help support person-centered care, holistic care - that is paying attention to mental AND physical health, the need for integrated care. The model can be used by one person or a group on a flipchart, paper... for brainstorming. The model's four care domains includes a POLITICAL and SOCIAL... more »

(@carmen2u)

Raising Awareness

Include social media links for trial promotion

Just as news articles include social media sharing buttons (Twitter, Facebook, etc.), so too should studies listed in ClinicalTrials.gov and elsewhere on government-funded studies that are listed online. Each viewer should have the ability to share information about a study with one click into their social network.

Raising Awareness

Address potential concerns regarding the disappointing outcomes of past trials

To add to the excellent ideas presented thus far, I would suggest considering the possibility that some prospective participants may have lost hope, having seen the outcomes of prior trials. I would not be contributing this idea if I agreed with that point of view; however, I think it may be important to acknowledge that disappointments have occurred, and provide an explanation of why it is believed that future trials... more »

(@eterril)

Raising Awareness

Reach Out to Religious Groups

Form a plan to reach out to religious groups. Often these groups comprise altruistic, compassionate persons who want to make a difference in their communities and world, and who want to support organizations that also have that aim. Ask to speak to interfaith groups such as local Ministerial Alliance and Church Women United meetings. Ask to speak to individual denominational meetings (although I suspect the interfaith... more »

(@natlefforts)

Raising Awareness

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 »

(@natlefforts)

Raising Awareness

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 »