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 (@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

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 (@juebelhack)

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 »

Voting

11 votes

Raising Awareness

Submitted by (@howardpam51)

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 »

Voting

11 votes

Raising Awareness

Submitted by (@rachel.pendexter)

Concise simple tool to funnel population specific open trials/ studies for physicians

Electronic updates and disease population specific information with simple tool for informing individual patient about potentially appropriate open studies and trials. If this tool could be integrated into healthcare systems electronic records tied to diagnostic codes, a family practice, internal medicine and or neurologist would be reminded at time of visit and simply print of a one page description of potentially ...more »

Voting

10 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 (@uaauckmcc)

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.

Voting

19 votes

Raising Awareness

Submitted by

Feature a Celebrity Participant

Recruit a celebrity to complete a Trial Match Profile and use a slogan of "I Did It - You Can Too!" This will create interest and especially drive home the point that you do NOT have to have Alzheimer's or be of a certain age in order to participate in Trial Match

Voting

13 votes

Raising Awareness

Submitted by

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 »

Voting

5 votes

Raising Awareness

Submitted by (@sznpetrella)

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 »

Voting

13 votes