# Protecting Privacy and Facilitating Shared Access of Clinical and Genetic Data of Special Populations

> **NIH NIH R01** · UNIVERSITY OF CALIFORNIA, SAN DIEGO · 2020 · $151,104

## Abstract

Project Summary
In response to the conclusion from the Subcommittee on Cardiovascular and Cerebrovascular
Disease of the Secretary of Health and Human Service’s Task Force on Black and Minority
Health’s that information on cardiovascular disease in American Indians is inadequate and its
recommendation of epidemiologic studies of this problem, the Strong Heart Study (SHS) was
initiated. For the past 30+ years, the SHS, the largest epidemiologic study of cardiovascular disease
in American Indians, has collected data on American Indians. In our parent grant that started at the
end of 2017, which is titled Protecting Privacy and Facilitating Shared Access of Clinical and Genetic
Data of Special Populations, we aim to address the challenge of making SHS data accessible to
interested and qualified researchers without harming the study participants who contribute their data.
We accomplish this by developing and integrating advanced technologies and scientific computing
toolkits to enable shared, but protected, data access, as well as to understand the data sharing
preferences of SHS participants. These tools are intended for researchers with quantitative
backgrounds. Thus, in this proposed supplement, we aim to implement tools for a different
audience—the participating tribal leaders and tribal community health professionals. For this
audience, we aim to develop a user-friendly dashboard that adheres to the required data privacy and
sharing requirements.
To develop this dashboard, we will conduct focus groups with tribal leaders, tribal community health
professionals, SHS participants, and tribal community members to inform the design and
implementation of the dashboard. The individuals participating in the focus group discussions would
be asked questions about their need for data, attitudes toward the types of data collected, and
attitudes about sharing community-level data. We will design and develop the dashboard using the
feedback obtained from these focus groups, and after implementation, evaluate its quality and
usability with the tribal leaders and tribal community health professionals. At the end of this 1-year
project, we will have a dashboard that is acceptable and useful to the tribal leaders and improves
community access to SHS data.

## Key facts

- **NIH application ID:** 10131571
- **Project number:** 3R01HL136835-02S1
- **Recipient organization:** UNIVERSITY OF CALIFORNIA, SAN DIEGO
- **Principal Investigator:** LUCILA OHNO-MACHADO
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $151,104
- **Award type:** 3
- **Project period:** 2020-08-15 → 2021-06-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10131571

## Citation

> US National Institutes of Health, RePORTER application 10131571, Protecting Privacy and Facilitating Shared Access of Clinical and Genetic Data of Special Populations (3R01HL136835-02S1). Retrieved via AI Analytics 2026-05-27 from https://api.ai-analytics.org/grant/nih/10131571. Licensed CC0.

---

*[NIH grants dataset](/datasets/nih-grants) · CC0 1.0*