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
(@natlefforts)

Raising Awareness

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 »
(@richardperkinspdx)

Raising Awareness

Increase Individual Genetic Risk Awareness in Population

Organizations like 23 and Me offer affordable genetic testing for late onset Alzheimer's. Due to family history, both my wife and I took these test due to family history. We also self reported a very extensive personal health and lifestyle history, helping to create a significant database of possible contributing factors to the emergence or progression of the disease. Our goals were to increase awareness so as to better... more »
(@holly153)

Raising Awareness

Ms. Holly

The rural communities and health car professionals and need to work together better to have a understanding of the Alzheimer

and dementia diseases and behaviors to gain better care and facilities that do not put all levels of disease in one place !!!

A good example of a facility that has this in place is the Masonic home in Elizabeth town, PA>

(@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.

(@sznpetrella)

Raising Awareness

Optimizing recruitment and building relationships with ageing participants

The need to find more qualified participants of all backgrounds and ages is critical to the outcome of any clinical trial. As noted elsewhere expense is an issue. Distance driving is a big stumbling block to participation. Our local senior center is a tremendous group of those who have cared for, currently care for or are experiencing a slow decline in cognitive skills. I am a former mental health counselor and I have... 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 »
(@howardpam51)

Raising Awareness

Virtual Tours

I recently participated in a Virtual Tour at a local ALZ office which was amazing! My husband was diagnosed 4 yrs ago at age 59 and I have been reading and researching plus he joined a clinical trial in Nashville and when we decided it was time to move back to TX they would not transfer him and the result to anyone in TX so he could continue. There were 2-3 places available in TX so this is all about the drug company... more »
(@jeff.borghoff)

Raising Awareness

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 »
(@uaauckmcc)

Raising Awareness

Create & maintain database of patients/family members

Create and maintain a database of Alzheimer's patients and their family members. This will enable researchers to not only contact family with important research results but also to have the ability to follow this disease on a massive scale. Then maybe scientists and researchers will have a better opportunity to find trial participants with documented genetic links to this disease.

(@juebelhack)

Raising Awareness

Marketing tactics: Building audience trust

The 2017 Edelman Trust Barometer results state that more than 50% of global survey respondents say individuals are more believable than institutions. For the first time in history, "A person like you" was ranked as credible as a technical or academic expert on any given topic, and more credible than a CEO or government official.

What does that mean when marketing to audiences to encourage them to participate in clinical... more »
(@prospectorky)

Raising Awareness

Let's hear from the researchers on television!

Anyone, who has experienced the insult of Alzheimers, firsthand, would rather hear from doctors on the front lines, than from anyone else for their loved one's care. Researchers could use surrogates on television to relay their trial ideas for possible Alzheimers prevention, treatment or screening opportunities. That would, at least, drive interest toward, current, trial opportunities, given the legitimacy. Researchers... more »