# Core-007

> **NIH NIH UL1** · OREGON HEALTH & SCIENCE UNIVERSITY · 2020 · $392,743

## Abstract

Engaging and understanding the perspectives of community stakeholders, including patients and their
caregivers, is a critical component of all phases of clinical and translational research. Community engagement
can facilitate efforts to identify health needs and priorities, provide critical input and data, and improve
recruitment and retention for clinical research studies. The overarching goal of the proposed Optional Function,
which we are calling the Health Experiences Research Initiative (HERI), is to augment current community
engagement efforts by amplifying patient and caregiver voices in clinical and translational research using a
time-tested, research-based approach for conducting and disseminating health experiences research.
We will collaborate with the OCTRI Community and Collaboration Core, the Health Experiences Research
Network (HERN-USA), the University of Wisconsin CTSA, and community partners to leverage and adapt the
Database of Individual Patient Experiences (DIPEx) methodology, developed in 2001 by researchers at Oxford
University as a way to provide trusted information on health experiences “from patients, for patients.” Our
approach is innovative in that we will build on a proven methodology and leverage community and cross-CTSA
collaborations to produce additional HERN modules (disseminated via healthexperiencesusa.org) and to
create a repository of health experiences research as a shared CTSA resource to inform clinical and
translational research. Specific aims include: 1) Amplify patient and caregiver voices in clinical and
translational research using a time-tested, research-based approach to improve understanding of patient
experiences, illuminate patient preferences, and contribute to the design and conduct of patient-centered
research; 2) Develop, evaluate and improve mechanisms for disseminating health experiences research for
use by CTSA researchers and stakeholders; 3) Build infrastructure and capacity for expanding and sustaining
a US Health Experiences Research Network (HERN-USA) that can be leveraged as an innovative shared
resource to more effectively integrate the voices of a diverse populations of patients and caregivers into all
phases of clinical and translational research.

## Key facts

- **NIH application ID:** 10191103
- **Project number:** 5UL1TR002369-04
- **Recipient organization:** OREGON HEALTH & SCIENCE UNIVERSITY
- **Principal Investigator:** David Hoadley Ellison
- **Activity code:** UL1 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $392,743
- **Award type:** 5
- **Project period:** — → —

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10191103

## Citation

> US National Institutes of Health, RePORTER application 10191103, Core-007 (5UL1TR002369-04). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/10191103. Licensed CC0.

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