Data Science Research: Personal Health Libraries for Consumers and Patients (R01 Clinical Trial Optional) | PAR 19 072

Opportunity Information: Apply for PAR 19 072

The National Library of Medicine (NLM), part of the National Institutes of Health (NIH), offered this R01 research grant opportunity to support new informatics and data science work focused on "personal health libraries" for consumers and patients. In practical terms, the program is aimed at tools, methods, and systems that help individuals collect, organize, integrate, and actually use information about their own health. That can include data coming from clinical care (such as electronic health records and lab results), patient-reported information, wearable and mobile sensor data, genomic information, medication and pharmacy histories, lifestyle data, and trusted health knowledge resources. The central idea is to make personal health data more usable for real people and to enable better decision-making, self-management, and communication with caregivers and clinicians.

A defining feature of this opportunity is its emphasis on novel approaches in informatics and data science, not just incremental software development. Competitive projects would typically involve research questions and technical innovation such as improved data integration across multiple sources, better ways to represent and structure personal health information, privacy-preserving methods for storage and sharing, interfaces that support comprehension and action, and algorithms that help patients find meaning in their data. The goal is not only to build something, but to generate generalizable knowledge and evidence about what works, for whom, and under what conditions. The funding announcement is labeled "Clinical Trial Optional," meaning applicants could propose studies that do or do not meet NIH's definition of a clinical trial, depending on whether they are prospectively assigning human participants to interventions to measure health-related outcomes.

Another major priority is broad dissemination and reuse. NLM explicitly highlighted that results should be shared widely through publications and, where appropriate, through open-source mechanisms for sharing code, data, or other resources produced by the project. That points to an expectation that funded work should benefit both patients and the broader research community, enabling replication, extension, and real-world adoption rather than remaining a closed, one-off system. Applicants would be expected to think carefully about sustainability, documentation, and community access, while still complying with human subjects protections, privacy rules, and any constraints tied to sensitive health information.

Administratively, this was a discretionary grant using the NIH R01 mechanism under the NIH funding opportunity number PAR-19-072, categorized under education and health with CFDA number 93.879. The listing shows an award ceiling of $250,000, and the original closing date provided in the source data is 2021-07-30 (with the opportunity originally created on 2018-11-19). As an NIH R01, budgets and project structures typically align with NIH standards for multi-year research projects, though applicants would still need to follow the specific budget guidance and any institute-specific expectations in the full announcement.

Eligibility was broad across U.S.-based organizations, including state, county, and local governments; special district governments; independent school districts; public and state-controlled colleges and universities; private institutions of higher education; federally recognized Native American tribal governments; tribal organizations that are not federally recognized; public housing or Indian housing authorities; nonprofits with or without 501(c)(3) status (other than institutions of higher education); for-profit organizations (other than small businesses); small businesses; and other eligible entities. The opportunity also called out additional eligible applicants such as Alaska Native and Native Hawaiian Serving Institutions, Asian American Native American Pacific Islander Serving Institutions (AANAPISI), Hispanic-serving institutions, Historically Black Colleges and Universities (HBCUs), Tribally Controlled Colleges and Universities (TCCUs), faith-based or community-based organizations, regional organizations, U.S. territories or possessions, and certain tribal governments other than federally recognized ones.

At the same time, the announcement draws a firm line on foreign involvement. Non-domestic (non-U.S.) entities and foreign institutions are not eligible to apply, and non-domestic components of U.S. organizations are also not eligible. In addition, foreign components as defined by the NIH Grants Policy Statement are not allowed. In effect, the work and the applying organization must be U.S.-based without foreign components under NIH definitions, which is important for teams that might otherwise plan substantial overseas collaboration or data collection.

Overall, this opportunity was designed for research teams working at the intersection of consumer health informatics, patient-centered data science, and health information management, with a clear expectation that the outputs would be broadly shareable and useful beyond a single study site. The best fit projects would typically combine technical innovation with careful attention to real user needs, trust, privacy, usability, and measurable impact on how people manage and use their personal health information.

• The National Institutes of Health in the education, health sector is offering a public funding opportunity titled "Data Science Research: Personal Health Libraries for Consumers and Patients (R01 Clinical Trial Optional)" and is now available to receive applicants.
• Interested and eligible applicants and submit their applications by referencing the CFDA number(s): 93.879.
• This funding opportunity was created on 2018-11-19.
• Applicants must submit their applications by 2021-07-30. (Agency may still review applications by suitable applicants for the remaining/unused allocated funding in 2026.)
• Each selected applicant is eligible to receive up to $250,000.00 in funding.
• Eligible applicants include: State governments, County governments, City or township governments, Special district governments, Independent school districts, Public and State controlled institutions of higher education, Native American tribal governments (Federally recognized), Public housing authorities/Indian housing authorities, Native American tribal organizations (other than Federally recognized tribal governments), Nonprofits having a 501 (c) (3) status with the IRS, other than institutions of higher education, Nonprofits that do not have a 501 (c) (3) status with the IRS, other than institutions of higher education, Private institutions of higher education, For-profit organizations other than small businesses, Small businesses, Others.

Apply for PAR 19 072

[Watch] Creating a grant proposal using the step-by-step wizard inside the applicant portal: