Bring together the leadership of registries to assess and devise a plan to link registries for the benefit of all. In addition to optimizing infrastructure and collaboration, examine how national outreach could support increased registry-based recruitment to trials.
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
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.
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>
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.
The model can be used by one person or a group on a flipchart, paper... for brainstorming. The model's four care domains includes a POLITICAL and SOCIAL... more »
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 »
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 »
In contrast, the public has immense interest in these areas e.g. see huge following of Dr. Oz, Dr. Perlmutter, etc.... more »
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 »
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