Susan LJ Dickinson

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Optimizing Participation in Alzheimer's Research

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Optimizing NIA’s Eureka Prize Competition Topic

Submitted by Susan LJ Dickinson (@sdickinson) 4 months ago

A prize specific to ADRDs

Alzheimer’s disease is the most prevalent but it is only one of several neurodegenerative diseases that lead to dementia. The heterogeneity among types of dementia and people impacted is part of what makes dementia care such a challenge for the US Healthcare system. For those facing one of the “related dementias” like frontotemporal degeneration (FTD) the challenge is compounded by the fact that most people and many medical ...more »

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Optimizing NIA’s Eureka Prize Competition Topic

We need your thoughts to optimize our intended Eureka Prize Competition on using technology to improve care for people living with Alzheimer’s disease and related dementias.

Navigating the complex US healthcare system can be challenging for people living with Alzheimer’s disease (AD) and related dementias (ADRD) and their caregivers. They must pursue an uncertain course of care of unknown duration across different care settings and interact with many different types of care providers and many different types of interventions. Models of dementia care have evolved in recent years and have the potential to improve outcomes. Barriers to adoption, however, include but are not limited to workforce limitations, the cost of practice redesign, and limited uptake by insurers and health systems.

The goal of our intended prize competition is to yield innovations that improve the quality of care for people living with AD/ADRD by establishing a proof of concept for the creation of a widely accessible and innovative technology tool(s) that addresses unmet needs in care coordination and/or care navigation through the health system. The concepts generated in this prize competition may be targeted at consumers (patients, caregivers), healthcare providers, healthcare service organizations, and/or health systems, and/or community, local, or state government, and will ideally foster connections between these stakeholders. For example, a collaboration between a technology company, EHR vendor and nursing home chain could yield EHR-based methods to improve care coordination.

We are looking for your ideas on the following topics as well as other related input that you would like to share:

• The possibility that this prize activity duplicates other ongoing activities in any relevant sector (e.g., academia, business)
• Attractiveness of this question to a broad audience of possible solvers
• The length of time solvers would need to develop a prize submission
• Metrics that judges might use to identify a winner

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Expired on 07/01/2018

Alzheimer's Research Recruitment

Optimizing Clinical Studies Recruitment

How can we optimize participation in Alzheimer's clinical trials and studies?

The national goal of effectively treating or preventing Alzheimer’s depends on us all -- potential participants and study partners, caregivers, healthcare providers, researchers, agencies and organizations, advocates, pharmaceutical companies, the media, and more. The scientific opportunity to build on what we have learned through research has never been greater. Capitalizing on these opportunities depends on participation and partnership of everyone who is willing and able to volunteer for research and on the support of those volunteers. Only by working together can we succeed in finding ways—and finding them more quickly—to effectively treat and prevent Alzheimer’s and related dementias.

How can the Alzheimer's community encourage and strengthen participation in clinical trials and studies?

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Expired on 04/30/2018
Building Relationships with Local Communities
How can study sites build trusting relationships in local communities?
Goal: To increase recruitment and retention of participants into Alzheimer’s and dementia research at the local level, focusing on inclusivity and diversity in age, race, ethnicity, sex, education, income, urban-rural demographics, and cognitive status (asymptomatic, MCI, AD and related dementias).

Ideas in this area might address:
- Planning for diversity and inclusion
- Building and sustaining relationships with community partners
- Community collaboration on research design
- Study design to facilitate participation
- Overcoming barriers
- Systems and infrastructure to support inclusive outreach
- Role of funders, organizations, policymakers in implementing
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Expired on 04/30/2018
Enhancing Study Site Capacity
What do study sites need to be able to reach and enroll more and diverse participants?
Goal: Create the capacity of study sites and research organizations to increase enrollment for an ever-growing portfolio of Alzheimer’s disease and related dementias studies.

Ideas in this area might address:
- Infrastructure investments needed to enhance capacity of sites to accommodate growing number of studies and participants
- Systems to improve recruitment efficiency
- Collaboration – with communities, other institutions and study sites, organizations and agencies
- Workforce diversity, training, and capacity
- Changes in culture or valuation of clinical research in organizations
- Effective use of registries
- Role of funders, organizations, policymakers in implementing
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Expired on 04/30/2018
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
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Expired on 04/30/2018
Cultivating Recruitment Science
What research questions do we need to answer about recruitment?

To continue to enhance effectiveness of recruitment efforts and improve tools, research methods, and recruitment practices, it is critical that we build the evidence base for a "science of recruitment." This evidence base can build the case for proven recruitment techniques and guide future study design, recruitment plans, and decision-making.

Ideas in this area might address:
- Identifying and characterizing target audiences
- Developing and testing audience-specific strategies and tactics
- Identifying gaps in knowledge about recruitment strategies and implementation
- Evaluating recruitment strategy success
- Developing a robust evidence base for recruitment strategies and a science of recruitment
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Expired on 04/30/2018
Raising Awareness
How can we raise awareness about and encourage participation in Alzheimer's research?

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
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Expired on 04/29/2018

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