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.
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
Hodges' model is a generic framework that facilitates problem solving, assessment and reflection. Developed in healthcare the model can help support person-centered care, holistic care - that is paying attention to mental AND physical health, the need for integrated care. 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 »
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.
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 »
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.
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
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
Many non-pharmacological interventions have theoretical justification and attractive but very limited clinical data suggesting benefit for cognition. Most of these are relatively safe. But, very little research in these areas get funded. So, that even very encouraging pilot studies rarely get replicated. In contrast, the public has immense interest in these areas e.g. see huge following of Dr. Oz, Dr. Perlmutter, etc. ...more »
Leverage physician communities on social media to provide regular updates to clinicians and inform them about their patients’ involvement in research studies.
Facilitate the emergence of a federation of self-organized online recruitment communities (i.e., digital villages, disease forums). Develop effective partnerships between research centers and social media companies. Machine-learning algorithms could use social media data to identify potential research participants and concerned family members, with great care regarding privacy concerns and garnering proactive consents. ...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 »
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 »
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 »
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>
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 »