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
(@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 »
(@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 »
(@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 »
(@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 »
(@podell2)

Raising Awareness

Identifying Promising but Under-Researched Intervnetions for Diet and Nutrition

Many non-pharmacological interventions have theoretical justification and attractive but very limited clinical data suggesting benefit for cognition. Most of these are relatively safe. But, very little research in these areas get funded. So, that even very encouraging pilot studies rarely get replicated.
In contrast, the public has immense interest in these areas e.g. see huge following of Dr. Oz, Dr. Perlmutter, etc.... more »

Raising Awareness

Develop information campaign for elder communities

Continuing care communities would be a great place to focus an informational campaign on participation in research. I cant say that I have seen anything in my mothers community. In those communities there are people in all stages of mental capacities, and people who have friends at all stages. It seems like there is an opportunity for a culture shift to making participation in research more of the norm than the exception.... more »
(@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 »
(@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 »