Rare Disease Day is February 28
More than 6,500 rare diseases exists at this time and less than 5 percent have a treatment. In the United States a rare disease is one that affects less than 200,000 people. However, roughly 25 to 30 million Americans are affected by a rare disease. Many of these diseases:
May involve chronic illness, disability, and often premature death
Often have no treatment or not very effective treatment
Are frequently not diagnosed correctly
Are often very complex
Are often caused by changes in genes
The theme for this year’s Rare Disease Day is “Research” with the slogan, “With research, possibilities are ...
Source: Dragonfly - February 22, 2017 Category: Databases & Libraries Authors: Carolyn Martin Tags: Health Literacy/Consumer Health Health Observances Source Type: news
Love Your Data Week, Day 5: Rescuing Unloved Data
How do data become unloved? We data users don’t love data that are messy, poorly documented, incomplete, or unwieldy, to name just a few frustrations. However, one important way that data become unloved is that they are just plain old. Older data tend not to be machine-readable, which can pretty much be the kiss of death. Digitization, while it’s improving, is still somewhat labor-intensive and costly, and so unless a data set is obviously worth the trouble, it may languish.
However, researchers are starting to explore whether there may be some hidden gems worth rescuing. One area in which this is happening i...
Source: Dragonfly - February 17, 2017 Category: Databases & Libraries Authors: Ann Glusker Tags: News From NN/LM PNR Source Type: news
Announcing New Funding Opportunities
The NN/LM PNR will announce new funding opportunities in the Spring of 2017, for projects to begin after May 1, 2017. Applications submitted by April 14, 2017 will receive fullest consideration and will be reviewed on a first come first serve basis.
Pending budget availability, new funding opportunities will include:
Community Health Outreach Award, two awards up to $9,500 each.
This award is to support outreach projects with aims to improve access and use of quality online health information for informed decisions about health in underserved communities. Possible activities include: 1) Promotional activities, including ...
Source: Dragonfly - February 16, 2017 Category: Databases & Libraries Authors: Patricia Devine Tags: Funding News From NN/LM PNR Source Type: news
Love Your Data Week, Day 4: DataLumos
The theme for Day 4 of “Love Your Data Week” is “Finding the Right Data”. There’s a lot of open national health data out there– Data.gov’s health portal, and the “Data and Tools” tab on the main page of the National Center for Health Statistics are good sources (also this list of open access data repositories has a good section on medicine).
But, any open data on the internet can be vulnerable if there isn’t a commitment to preserve it or if organizational priorities change, and government data are no exception. Enter DataLumos! This service, launched (not coincidentally)...
Source: Dragonfly - February 16, 2017 Category: Databases & Libraries Authors: Ann Glusker Tags: News From NN/LM PNR Source Type: news
Love Your Data Week, Day 3: All ’s FAIR in Love and Data Management
Welcome to day three of Love Your Data Week 2017! Today’s topic is Good Data Examples. What makes data “good” or “well managed?” The Fair Data Principles: Findability, Accessibility, Interoperability, and Reusability are a good place to start. Published by Mark Wilkinson and his colleagues in 2016, these principles “put specific emphasis on enhancing the ability of machines to automatically find and use the data, in addition to supporting its reuse by individuals.” 1A brief description of the principles, excerpted from Wilkinson’s article, explains:
To be Findable:
F1. (meta)data are assigned a global...
Source: Dragonfly - February 15, 2017 Category: Databases & Libraries Authors: Ann Madhavan Tags: Data News From NN/LM PNR Source Type: news
Love Your Data Week!
Welcome to Love Your Data Week 2017! This “5-day international event to help researchers take better care of their data” has participants from all over the United States and also abroad, with everyone posting and tweeting about data (best practices, resources, etc.). The PNR will be posting on our Facebook and Twitter pages, as well as here on the Dragonfly blog, about data issues and trends you may want to know about, whether or not you work directly with researchers.
Today’s topic is “Documenting, Describing and Defining Data” and we are pleased to re-post a behind-the-scenes look at how...
Source: Dragonfly - February 14, 2017 Category: Databases & Libraries Authors: Ann Glusker Tags: News From NN/LM PNR Source Type: news
Next PNR Rendezvous is February 15 (this session is cancelled)
We apologize, but this webinar session is cancelled due to unforeseen circumstances for speaker.
When: Wednesday February 15, 1:00pm PT, Noon Alaska Time, 2:00pm Mountain Time
Session Title: “Library, Family, Primary Care and Community Collaboration for Young Children”
Learn how to join the webinar at https://nnlm.gov/classes/pnr-rendezvous
Join us for the next PNR Rendezvous webinar session where Kate Orville who is the Co-director of the Washington State Medical Home Partnerships Project for Children and Youth with Special Health Care Needs (MHPP) housed at the University of Washington’s Center on Human Develo...
Source: Dragonfly - February 9, 2017 Category: Databases & Libraries Authors: Carolyn Martin Tags: Health Literacy/Consumer Health Public Health Public Libraries Training & Education Source Type: news
Next PNR Rendezvous is February 15
When: Wednesday February 15, 1:00pm PT, Noon Alaska Time, 2:00pm Mountain Time
Session Title: “Library, Family, Primary Care and Community Collaboration for Young Children”
Learn how to join the webinar at https://nnlm.gov/classes/pnr-rendezvous
Join us for the next PNR Rendezvous webinar session where Kate Orville who is the Co-director of the Washington State Medical Home Partnerships Project for Children and Youth with Special Health Care Needs (MHPP) housed at the University of Washington’s Center on Human Development and Disability.
Learn how primary health care providers and clinics are changing to become ...
Source: Dragonfly - February 9, 2017 Category: Databases & Libraries Authors: Carolyn Martin Tags: Health Literacy/Consumer Health Public Health Public Libraries Training & Education Source Type: news
American Heart Month and Black History Month
Currently the Seattle Art Museum is hosting the exhibition, Jacob Lawrence: The Migration Series. This celebrated exhibit, which brings all 60 of Lawrence’s paintings from this series together, is collectively owned by both The Phillips Collection and the Museum of Modern Art in New York City. It marks Lawrence’s 100th birthday who also held a tenured professor position at the University of Washington in 1971 and retired in 1986.
Lawrence’s iconic collection, utilizes both images and words to chronicle the exodus from the rural South to the industrialized North between the first and second World Wars. Man...
Source: Dragonfly - February 8, 2017 Category: Databases & Libraries Authors: Carolyn Martin Tags: Health Literacy/Consumer Health Health Observances Source Type: news
All of Us Research Program Announces Funding Opportunity for Community Partners
An announcement regarding the Precision Medicine Initiative All of Us Research Program which may be of interest to public and medical libraries who could be eligible partners. Please note scheduled informational webinar on February 10, 9:00 – 10:00am PT. Register
The National Institutes of Health has announced a new opportunity for organizations interested in helping engage volunteers in the All of Us Research Program, part of the Precision Medicine Initiative. This funding opportunity, open to national and regional organizations, as well as local community groups, will support activities to promote enrollment and r...
Source: Dragonfly - February 6, 2017 Category: Databases & Libraries Authors: Carolyn Martin Tags: News from NIH News from NLM Public Health Public Libraries Source Type: news
New Moodle Class Regarding Genetics and Health
Were you unable to make it to the in-person classes of, “We’re Way Past Peas: Uses of Genetic Information to Understand Human Health and Guide Health Care Decision Making”? Now it is available as a Moodle class where attendees can work asynchronously during the month of March. The class consist of four topics such as learning some of the principles of genetics and how it is used in health care and consumer information which includes direct-to-consumer testing, the Precision Medicine Initiative and more. The class also includes a webinar portion where the instructors will demonstrate resources from NCBI...
Source: Dragonfly - February 2, 2017 Category: Databases & Libraries Authors: Carolyn Martin Tags: News From NN/LM PNR Training & Education Source Type: news
Women ’ s Health and Health for All
What an amazing day January 21, 2017 was with a Women’s March in every state in the country and to even have other countries join in solidarity with their own marches! Having a day to remember women and men as well as those who are disenfranchised, under-represented and under-served and to recognize the importance of the voices of many is one of the reasons that made this march significant. The health inequities and health disparities experienced by many in this country call us to constantly work toward what is right. The National Library of Medicine resources are authoritative and freely available. MedlinePlus is a...
Source: Dragonfly - January 23, 2017 Category: Databases & Libraries Authors: Carolyn Martin Tags: Health Literacy/Consumer Health Public Health Public Libraries Source Type: news
Professional development opportunity- “ Building Your Research Data Management Toolkit: Integrating RDM into Your Liaison Work ”
The Inland Northwest Health Science Libraries group, in collaboration with libraries at Washington State University, Eastern Washington University, Gonzaga University and area hospitals is bringing the Association of College and Research Libraries workshop, Building Your Research Data Management Toolkit to Gonzaga University in Spokane on Monday, April 10th, 2017.
Research data management (RDM) has emerged as a need among academic researchers and liaisons are building skills in response. This one-day workshop will assist liaisons to identify their existing skills and mindsets that transfer to research data management servi...
Source: Dragonfly - January 18, 2017 Category: Databases & Libraries Authors: Carolyn Martin Tags: Data News from Network Members News From NN/LM PNR Training & Education Source Type: news
NLM Announces Two New Appointments in Library Operations!
National Library of Medicine Associate Director for Library Operations Joyce Backus has announced the appointment of Amanda J. Wilson as Head of the National Network Coordinating Office (NNCO); and the appointment of Mark Ziomek as Chief, Public Services Division, both in NLM Library Operations.
Ms. Wilson will lead the office responsible for coordinating NLM’s nationwide program designed to advance the progress of medicine and improve the public health by providing access to biomedical and health information for both health professionals and the public. Eight Regional Medical Libraries and five National Offices lead a c...
Source: Dragonfly - January 12, 2017 Category: Databases & Libraries Authors: Maddie Romansic Tags: News from NLM News From NN/LM PNR Source Type: news
PNR Update is the next PNR Rendezvous webinar
The next PNR Rendezvous session is a chance for those who may not be familiar with the National Network of Libraries of Medicine (NN/LM) to be introduced to their regional office, the Pacific Northwest Region or more commonly referred to as the PNR. It can be a bit confusing especially because we promote and feature the resources of the National Library of Medicine (NLM) which is one of the National Institutes of Health (NIH).
For those of you familiar with the NN/LM PNR we will be updating you about some of the changes that have been occurring at the NN/LM and NLM as well as our own regional office.
In this ...
Source: Dragonfly - January 11, 2017 Category: Databases & Libraries Authors: Carolyn Martin Tags: News From NN/LM PNR Training & Education Source Type: news
