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 »
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
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 »
Develop interventions, resources, and support programs and campaigns to improve recruitment and retention, based on knowledge of social norms and effective incentives for various audiences.
For patients and physicians who register with an online patient registry, the registry should automatically send weekly updates on new trials open close to the zip code of the patient or the physician so that the stakeholder can be informed of new trials through a more passive approach
Partner with formal and informal community groups. Go to places where older adults tend to go, such as church, grocery stores, hair salons, coffee shops, etc. Ask the priest or pastor, or manager if you could speak for a few minutes about memory loss and research studies. Be a frequent visitor and make friends.
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 »
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>
How to raise awareness about and encourage participation in Alzheimer's research? Go “old school” with advertising and communications efforts. Whether it’s selling consumer products and services or trying to recruit people into clinical trials, the focus today has been on using “big data”. Individuals are now profiled to the nth-degree. Because of this, there has been a stampede of government agencies and brands to... more »
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 »
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.
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 »
My husband and I would like opportunities to share our caregiver story of how we met and continued to care for our Alzheimer's spouse while they were in memory care facilities.
Facebook advertising has been used very effectively by our small biotech company, Tetra Discovery Partners, to recruit healthy elderly volunteers to test a memory drug. Older adults are among the fastest growing users of Facebook, and they click at a higher rate than young people. An advertising campaign with genuine and compassionate messaging will fill the funnel with interested families. (Cliched stock photos and... more »
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 »
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 »