There is much valid research that has already been done that has not been evaluated and disseminated well to the providers of care, neither physicians, educational institutions nor institutional providers of care. Address translation of scholarly research and distribution of applicable material for actual application to professionals, educators, clinicians and family caregivers. My small educational research project ...more »
Developing Data, Tracking Progress
How can we measure progress in Alzheimer’s research recruitment?
As the Alzheimer's research community explores and implements enhanced strategies for recruitment, how can we develop consolidated and localized data on recruitment for Alzheimer's studies, track progress in recruitment and retention of study participants, and tailor strategies based on that data?
Ideas in this area might address:
- Meaningful measures of community engagement
- Approaches to measuring return on investment (ROI)
- Indicators of effectiveness for recruitment strategies
- Recruitment data sharing and harmonization
Available Information Technology data is going exponential across the world. Reach up to big data sites and encourage collaboration, Kaiser Permanente, ConsumerLab.com, Major NIH and other health data collectors as examples. Also find alliances outside the U.S. that are collecting & sharing Mega Data on health. Encourage discussions about collaboration and sharing data on multiple important health issues, such as Alzheimer's. ...more »
Develop measures of trust within communities.
Set site or region specific recruitment targets and enforced accountability metrics to ensure inclusion goals are met.
Develop a strategy to evaluate the effectiveness of community outreach, e.g., tracking engagement for social media, websites, hotlines.
Create a national, regional, or local recruitment infrastructure that enables tracking of research-ready volunteers, via registries and other consented sharing mechanisms. Bring together trialists and research sponsors (e.g., foundations, governments and industry), facilitated by additional experts like industrial engineers and implementation scientists, to discuss recruitment practices with regard to standardized and ...more »
Facilitate reporting by investigators and sponsors of screening, randomization, and retention rates of various trial designs.
Identify measures of success for a registry and compare the effectiveness of registry models (e.g., national vs. regional or local; Alzheimer’s and dementia vs. “brain health;” on-line vs. in-person; primary care vs. community vs. memory care based, etc.).