PSR Data Science
Request for Information: Submit Comments on the NIH Draft Strategic Plan for Data Science by April 2!
In order to capitalize on the opportunities presented by advances in data science, the National Institutes of Health (NIH) is developing a Strategic Plan for Data Science. This plan describes NIH’s overarching goals, strategic objectives, and implementation tactics for promoting the modernization of the NIH-funded biomedical data science ecosystem. As part of the planning process, NIH has published a Request for Information (RFI) to seek input from stakeholders, including members of the scientific community, academic institutions, the private sector, health professionals, professional societies, advocacy groups, patient communities, as well as other interested members of the public.
The NIH seeks comments on any of the following topics:
- The appropriateness of the goals of the plan and of the strategies and implementation tactics proposed to achieve them;
- Opportunities for NIH to partner in achieving these goals;
- Additional concepts that should be included in the plan;
- Performance measures and milestones that could be used to gauge the success of elements of the plan and inform course corrections;
- Any other topic the respondent feels is relevant for NIH to consider in developing this strategic plan.
Responses to this RFI must be submitted electronically by April 2, 2018.
The National Library of Medicine 2017-2027 Strategic Plan, A Platform for Biomedical Discovery and Data-Powered Health is now accessible online. The web site also offers readers the opportunity to submit any thoughts and/or reactions about the plan, if desired. NLM’s future is being built on three pillars:
- NLM as a platform for data-driven discovery and health
- Reaching new users in new ways
- Workforce excellence from citizens to scientists
Highlights of some initial NLM implementation activities include the following:
- A strong, robust platform for delivering NLM’s literature and data resources
- Energizing the NLM research agenda to meet a data-rich future
- Alignment of NLM outreach efforts
- Stabilizing NLM audiovisual support services
- Improved deposit, curation, and discovery services
Check out the plan and submit your feedback!
Request for Information: Submit Research Questions to Inform Development of the NIH All of Us Research Program!
The National Institutes of Health has issued a Request for Information (RFI) to solicit public input to inform future updates to the All of Us Research Program that would be of most benefit to participants, researchers, and the broader community. The information provided will help identify key research priorities and requirements (such as data types and methods) for future versions of the All of Us protocol. All responses must be submitted online by February 23 through the program’s IdeaScale website. The RFI solicits “use cases,” or input on health problems or research questions of interest that All of Us could potentially help address.
The All of Us Research Program will make all responses available on the website as a searchable reference and as a principal database of use cases and requirements for informing future plans for All of Us. An advantage of using Ideascale is that it provides the opportunity to see what others have added as research ideas. Over 250 have already been submitted! Another feature is the ability to vote on your favorite ideas or comment on submissions. Commenting is a great way to start a dialogue with other submitters. All responses will be considered at the All of Us Research Priorities Workshop, scheduled for March 21–23 in Bethesda, MD.
The mission of the All of Us Research Program is to advance the science of precision medicine and ensure everyone shares in its benefits. The overall objective of the program is to build an observational research resource that will provide the information needed to address a wide range of scientific questions, facilitating the exploration of biological, clinical, social, and environmental determinants of health and disease. It will be one of the larges, most diverse datasets of its kind for health research. The program will collect and curate health-related data and biospecimens from one million or more individuals who reflect the diversity in the United States and will sign up to share their information over time. These data and biospecimens will be made broadly available for research uses. Researchers will be able to access participants’ de-identified information for a variety of studies to learn more about the factors that influence health and disease. Their findings may lead to more individualized health care approaches in the future.
The program is currently in beta testing, with a national launch anticipated in spring 2018. Once enrollment opens nationally, volunteers over the age of 18 who live in the United States will be able to join All of Us, either directly through the website or through participating health care provider organizations. All of Us aims to be open to all interested individuals, to reflect the rich diversity of America and to serve as a catalyst for innovative research programs and policies.
This is a unique opportunity to share your research ideas with the All of Us Research Program! Feel free to send any questions about this process to AoURPW@nih.gov.
The National Library of Medicine has announced the list of participants in the National Network of Libraries of Medicine (NNLM)-created program, Biomedical and Health Research Data Management for Librarians. The program began January 8, introducing librarians to data issues and policies, with the goal of implementing or enhancing data services at their institution. The course topics include an overview of data management, choosing appropriate metadata descriptors or taxonomies for a dataset, addressing privacy and security issues with data, and creating data management plans.
The program offers an 8-week online class, mentoring by a data librarian, and completion of a capstone project at the end of the course. The experience culminates in a summit at the NIH campus in Bethesda, MD, on April 10-11. NLM Director Patricia Flatley Brennan, RN, PhD, said, “We need data-sophisticated librarians who can assist the research process, the enterprise, in developing the resources and data services around them. The Biomedical and Health Research Data Management for Librarians program will offer the kind of training that will develop librarians’ skills and develop practical and actionable data services at their own institutions.”
Program participants from NNLM PSR include Lynn Kysh, University of Southern California; Andrea Lynch, City of Hope; and Linda Murphy, University of California, Irvine. The program was developed and is led by Jessi Van Der Volgen (Assistant Director of NNLM Training Organization) and Shirley Zhao (Data Science Librarian of the Spencer S. Eccles Health Sciences Library, University of Utah), and is supported by co-teachers, reviewers, and mentors from libraries across the country: Marisa Conte, Anna Dabrowski, Christopher Eaker, Lisa Federer, Jen Ferguson, Jessica Gallinger, Patricia Gogniat, Tina Griffin, Margaret Henderson, Amy Koshoffer, Wladimir Labeikovsky, Tobin Magle, Sara Mannheimer, Hannah Norton, Peter Oxley, Zac Painter, Kevin Read, Franklin Sayre, Yasmeen Shorish, Vicky Steeves, Alisa Surkis, Jamie Wittenberg, and Mary Zide.
The NNLM Research Data Management Working Group will also participate in the summit and continue to serve as a resource for health sciences librarians and information professionals interested in improving their data management skills. The program complements the ongoing efforts of the NNLM RD3: Resources for Data-Driven Discovery which serves as a resource in fostering learning and collaboration in data science to support sharing, curating, and annotating biomedical data. A complete list of program participants is available on the NLM web site.
by Yamila El-Khayat
Outreach Services Librarian
Health Sciences Library
University of Arizona
The NIH All of Us Research Program traveling exhibit came to the University of Arizona’s Banner Health Hospital Campus on December 7, 2017. It provided an excellent opportunity to visit and learn more about the All of Us Program. At the entry, there was an introductory video that clearly and simply introduced the All of Us project. The video focused on two individuals of differing ethnicities and lifestyles, but with the same diagnosis. It focused on the importance of molding medicine to each individual because of their differences. It was a very creative way of simply defining the concept of precision medicine.
Next in the exhibit was an area to answer a couple of questions on a tablet computer. Then your picture was taken and you received a color identification from the spectrum of options. The picture was then shown framed in the identity color. No definitions were supplied regarding the colors, but I ended up being red, which according to the person giving us the tour was rare, and her first experience seeing that color. It was a further illustration of the differences in each of us. Finally, we were shown other activities and noises and had to identify what we thought they were and then shown what they really were. This was a way to learn about differing perceptions, again emphasizing the importance of uniqueness in individuals. All in all, the exhibit was an informative and entertaining way to learn more about the All of Us Research Program.All of Us Traveling Exhibit
NIH’s All of Us Research Program Partners with NNLM to Reach Target Communities Through Local Public Libraries
The NIH All of Us Research Program and the National Library of Medicine (NLM) have teamed up to raise awareness about the program, a landmark effort to advance precision medicine. Through this collaboration, the National Network of Libraries of Medicine (NNLM) has received a $4.5 million award to support community engagement efforts by public libraries across the United States and to improve participant access. According to Eric Dishman, director of the All of Us Research Program: “We want to reach participants where they are. For many people in the country, including those with limited internet access, one of those places is the local library. We’re excited to work with the National Library of Medicine to make more people aware of All of Us and the opportunity to take part.”
The partnership is a three-year pilot program, running through April, 2020. Program objectives include:
- To increase the capacity of public library staff to improve health literacy.
- To equip public libraries with information about the All of Us Research Program to share with their local communities.
- To assess the potential impact of libraries on participant enrollment and retention.
- To highlight public libraries as a technology resource that participants can use to engage with the program, particularly those in underserved communities affected by the digital divide.
- To establish an online platform for education and training about All of Us and precision medicine, with resources for members of the public, health professionals, librarians and researchers.
- To help identify best practices in messaging and outreach that lead to increased public interest and engagement in the program.
The All of Us Research Program aims to build one of the largest, most diverse datasets of its kind for health research, with one million or more volunteers nationwide who will sign up to share their information over time. Researchers will be able to access participants’ de-identified information for a variety of studies to learn more about the biological, behavioral and environmental factors that influence health and disease. Their findings may lead to more individualized health care approaches in the future.
Amanda J. Wilson, head of NLM’s National Network Coordinating Office (NNCO), and Dara Richardson-Heron, M.D., chief engagement officer of the All of Us Research Program, will lead the new partnership. Each NNLM region’s funding includes one FTE for an All of Us Point of Contact. Kelli Ham, formerly NNLM PSR Consumer Health Librarian, will fill the role in the Pacific Southwest Region. Her new title will be Community Engagement Librarian. Over the course of the pilot program, Kelli will focus her outreach efforts on various designated target geographic areas in the region, beginning with Sacramento, CA.
The All of Us Research Program is currently in beta testing. To learn more, sign up to receive updates. Precision Medicine Initiative, All of Us, the All of Us logo, and “The Future of Health Begins with You” are service marks of the U.S. Department of Health and Human Services.