Data Science Research: Personal Health Libraries for Consumers and Patients (R01) (PAR-17-159)
Amount: Up to $250,000/year, max 4 years.
The National Library of Medicine seeks applications for novel informatics and data science approaches that can help individuals gather, manage and use data and information about their personal health. A goal of this program is to advance research and application by patients and the research community through broadly sharing the results via publication, and through open source mechanisms for data or resource sharing. To bring the benefits of big data research to consumers and patients, new biomedical informatics and data science approaches are needed, shaped to meet the needs of consumers and patients, whose health literacy, language skills, technical sophistication, education and cultural traditions affect how they find, understand and use personal health information. Novel data science approaches are needed to help individuals at every step, from harvesting to storing to using data and information in a personal health library.
Applicants must base their proposed work on an informed profile of the intended users, and, the work should be developed through interaction with the user. The strongest projects will provide approaches that incorporate health data and information from more than one source, such as diagnostic images and links to full-text articles or genome sequence data linked to a family health history. An application should be centered on the problem area being addressed and the intended audience, propose a possible solution that employs novel data science or informatics, and undertake a pilot that will result in evidence of the degree of success and/or needed next steps. Applicants should expect to involve the intended users in their work.