# Core B: Primary Data Collection and Partner Engagement

> **NIH NIH P01** · BROWN UNIVERSITY · 2024 · $369,381

## Abstract

PROJECT SUMMARY
More than 6 million people in the United States currently live with Alzheimer's disease and related dementias
(ADRD), and this number is expected to more than double by 2050. Research has shown that over the course
of disease progression, persons with ADRD have considerable healthcare needs and utilization, often with
poor outcomes resulting from that care. Existing research is largely quantitative, despite increased emphasis
placed on the value of engaging directly with persons with ADRD about their lived experiences. Further,
qualitative approaches are needed to provide insights into how and why quantitative outcomes occur. Thus,
the overall objective of Core B is to characterize the underlying mechanisms by which healthcare outcomes for
persons with ADRD are achieved through qualitative approaches that include obtaining perspectives from a
variety of key informants including healthcare providers, payers, caregivers, and persons living with ADRD
themselves. Core B will centrally unify primary data collection activities of the P01 and serve all four proposed
research Projects, implementing a series of case studies that will collect data used across all Projects. In
addition, Core B will develop and integrate partner advisory panels, which will provide critical insights into
considerations about translating P01 findings, across Projects and Cores, into policy and practice. The aims of
Core B are: 1. To characterize how policies and market forces (structures) and provider and payer behavior
and relationships (processes) influence healthcare choice, access, use, and ultimately outcomes for persons
with ADRD across settings of care. This will be accomplished by conducting case studies in eight healthcare
markets around the country; and 2. To contextualize and translate findings to inform policy and practice based
on feedback and recommendations from our partner engagement panels, representing "systems-level" and
"lived experience" perspectives. Through quarterly engagement meetings, the perspectives gathered from key
informants will inform the integration of qualitative data generated by Core B with the quantitative data of the
four Projects as well as facilitate the translation of research findings into policy and practice. Completion of
these aims is aligned with the National Plan to Address Alzheimer's Disease goals of enhancing care quality
and efficiency and expanding supports for persons with ADRD and their families. Explicitly, by gathering
perspectives from those for whom the findings are most relevant--healthcare payers and providers and
persons with ADRD--we expect implications will be actionable and translatable into policy and practice.

## Key facts

- **NIH application ID:** 10934967
- **Project number:** 2P01AG027296-16
- **Recipient organization:** BROWN UNIVERSITY
- **Principal Investigator:** Emily Aurora Gadbois
- **Activity code:** P01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2024
- **Award amount:** $369,381
- **Award type:** 2
- **Project period:** 2007-09-15 → 2029-05-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10934967

## Citation

> US National Institutes of Health, RePORTER application 10934967, Core B: Primary Data Collection and Partner Engagement (2P01AG027296-16). Retrieved via AI Analytics 2026-05-25 from https://api.ai-analytics.org/grant/nih/10934967. Licensed CC0.

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