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 »
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
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 »
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 »
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 »
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 »
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 »
Set up a newspaper based advertisement with regular frequency in a section that targets the 50+ population to raise awareness on the importance of brainhealth.
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 »
Clinical trials are foreign to patients and caregivers. More education about the trials, what it means to be involved, privacy issues and ability to exit the trial at any time needs to be communicated more directly to the desired sample subjects. I am a volunteer Alzheimer's Association Community Educator. I always briefly discuss the trials and potential benefit of involvement. However, it is then left to the person... 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 »
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 »
Institute a celebrity driven awareness campaign targeted towards raising awareness of clinical trials in AD among the 50+ age cohort either through TV ads or on the radio or through newspapers.
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
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.