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 »
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
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 »
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 »
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 »
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 »
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 »
Raise awareness on the importance of brain health through celebrity driven awareness campaigns. Much like the Selena Gomez campaign on Lupus nephritiis, institute a celebrity driven campaign for AD targeted towards the 50+ population
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 »
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 »
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 »
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
Leverage physician communities on social media to provide regular updates to clinicians and inform them about their patients’ involvement in research studies.
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.
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
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 »