Many of your patrons may have an interest or even have had a clinical genetic test or done a direct to consumer genetic test. The next PNR Rendezvous session is an opportunity to learn more about both clinical and consumer genetic tests regarding health.
When: Wednesday, August 15 starting at Noon, Alaska Time, 1:00pm PT, 2:00pm MT
Session title: Genetic Testing in the Era of Genomic Sequencing
Summary: This presentation will include information on current genetic testing and genetic counseling practices, with a focus on the implementation of new sequencing technologies into clinical medicine. Implications and ethical considerations for both clinical and direct to consumer genetic tests will be discussed.
Presenter: Laura Amendola, MS CGC, Licensed Genetic Counselor, Clinical Associate Professor, Division of Medical Genetics at the University of Washington
How to join: Registration is encouraged but not required
The session is worth 1 Medical Library Association CE for attending live or the watching the recording (up to 6 months from the live session).
We hope you can attend!
You may have seen the feature on the front page of our website, “Where in the World are the PNR Coordinators?” But, we don’t always report back on our travels! So, here is a quick view of a conference I attended on behalf of the NNLM-PNR, that took place in Bozeman, MT last month, called “Open Repositories 2018”. What is an open repository? I like this definition from the “Repositories Support Project”:
“A digital repository is a mechanism for managing and storing digital content. Repositories can be subject or institutional in their focus. Putting content into an institutional repository enables staff and institutions to manage and preserve it, and therefore derive maximum value from it… Repositories use open standards to ensure that the content they contain is accessible in that it can be searched and retrieved for later use.”
I don’t work with repositories directly, so this conference was basically like drinking water from a fire hose. The attendees were a mix of librarians/library staff and people from the IT side of running repositories, meaning that my comprehension of a given session could range from about 5% (for the very techie ones) to 100%. And that was fine—I got a great introduction to the issues involved in starting and running repositories, and learned about some new trends, some areas of conflict and some growing pains (hence the title of this post). For example, take a look at this presentation by Peter Sefton. I pretty much understand the whole section above the picture of the boat, and then an average of about 65% of what’s below it; that feels worth it to me! It was an international conference, so the perspective on how repositories are handled was global. I would never otherwise have heard of Australian Sefton’s work, or been able to attend a session on the Digital Repository of Ireland. I even got to spend a full day attending two workshops on Wikidata and Wikipedia editing (did I mention that the NNLM’s next Online Wikipedia Edit-a-Thon is November 7 this year?).
And, one great thing about open conferences and all things open is that you can often gather the content for yourself after the conference even if you didn’t attend it. Here are some options if you want more information about what happened at this conference:
— YouTube stream of everything held in the main session space (including the Digital Repository of Ireland presentation)
— Social media: Twitter= @OR2018MT, Instagram= @openrepositories18
I leave you with three photos from the experience. One is of me with my poster highlighting three of the National Library of Medicine’s eight data sharing repositories: ClinicalTrials.gov, PubChem and GenBank. And the other two are from my visit to the Museum of the Rockies, which features the most amazing dinosaur exhibit I’ve ever seen, and a thing I love—a historic house which was moved to the museum site, furnished appropriately to the period in which it was built, and staffed by costumed and knowledgeable living history interpreters.
The Multnomah County Library in Portland, Oregon received a Community Health Outreach Award from the NNLM PNR to pilot the use of health information kiosks, aimed at people who are experiencing houselessness in Multnomah County. Here is a report of their project from Steph Miller, Programming Librarian — Technology and Workforce Development.
Increasing Access to Credible Health Information for Public Library Patrons Experiencing Houselessness
People who are experiencing houselessness come to public libraries to find information and to use the internet. According to local studies in Multnomah County, Oregon, 57 percent of the population experiencing houselessness also self-identify as having a “disabling condition,” defined as a mental health condition, substance abuse, developmental disability, HIV/AIDS, or another chronic health condition. Experiencing homelessness can make finding health information and communicating with healthcare providers difficult.
With the goal of facilitating access to authoritative health information resources and communication between patients and providers, Multnomah County Library installed health information iPad kiosks at two locations in and near downtown Portland, with the input and support of the Multnomah County Health Department. The library made these kiosks available to library patrons from September 2017 to April 2018. They highlighted a curated list of authoritative online health resources and the online health portal, MyChart, which is a tool through which patients can engage with healthcare providers, view lab results, and more. Project leads also trained key staff at each library, who then supported their colleagues as they helped patrons. Soon after the iPad kiosk was installed in Central Library’s Community Room, where many patrons frequently stay for long periods of time, a colleague shared this feedback and experience:
“This is a great idea! It was totally easy to help a patron today because of the iPad. He just wanted info on a certain medication but he said that he wasn’t very computer literate. I just set him up on the iPad, found the medication on MedlinePlus, and he sat down and read all of the info.”
The measurable result of these efforts during these seven months was that the webpage portal had 840 pageviews. One of the original objectives of the project was to engage influencers amongst people experiencing houselessness, however, this proved difficult, as people without homes need to prioritize finding a home, food and paying jobs and may not have time or access to support this project over a period of time.
This project helped underscore the difficulty of a dynamic public library system committing time and attention (and physical space!) to specific projects with a specific focus like this one, over an extended period of time, in the midst of the many other initiatives, priorities and changes.
The July 2018 issue of NIH News in Health is now available. In this issue, information about preparing for menopause and acne are highlighted.
In addition, readers will learn about:
- the new National Center for Complementary and Integrative Health app, HerbList
- diet and hearing loss
- a program for those 60 and older to quit smoking
Anyone can subscribe and access NIH News in Health. The information contained in this monthly publication is for anyone but especially the public with practical news and tips that are based on NIH (National Institutes of Health) research. Individuals can subscribe to receive this monthly newsletter in email and offices, clinics, community centers and libraries in the U.S. may receive print copies for their patients, clients, and patrons for free.
It’s a great way to provide health information for your community from an authoritative source.
Big data and research data management are evolving quickly and it can be challenging to keep up with developments in the field. Social media is a great way to keep track and to ask questions of colleagues, researchers, and vendors. Below are several links worth checking out…
CANLIB-DATA is a listserv for issues related to research data in Canadian libraries, with more than 350 subscribers.
DataCure “is a Google group of librarians and information professionals whose members have significant roles or responsibilities in providing services in managing or curating research data. Datacure exists to provide a safe space for data professionals to talk frankly about their ideas, projects, successes, and struggles with their work.”1
Datalibs distribution list is intended to serve as both a bulletin board for news, upcoming events, and continuing education/job opportunities as well as a forum that librarians can use to post questions or to initiate and engage in discussions. Join via the Journal of eScience Librarianship website.
IASST-L The International Association for Social Science Information Services and Technology (IASSIST) is an international organization of professionals working with information technology and data services to support research and teaching in the social sciences. Join IAssist ($50 USD annually) to access their organization’s email discussion list IASST-L.
MLA Data-SIG is the Medical Library Association’s data related special interest group. Membership in the MLA is required to access the SIG list serv.
@NNLM_RD3 is the NNLM RD3: Resources for Data-Driven Discovery website’s Twitter feed. When tweeting, use the #datalibs hashtag to reach out to other data librarians.
RDAP or the Research Data Access & Preservation Summit is relevant to the interests of data managers, data curators, librarians working with research data, and researchers and data scientists. RDAP is currently in transition and has moved its listserv to a new server. RDAP’s new e-mail address may be the best place to inquire about further developments.
RESEARCH-DATAMAN is an email discussion list for United Kingdom education and research communities.
The data science departments on your own campus may also host listservs, Twitter sites, Facebook pages, or blogs. The University of Washington’s eScience Institute is just one example of the data related centers available near the PNR’s home base. If you know of additional data related listservs, Google Groups, or Twitter sites, share them with your colleagues by entering them in the comments section below.
1 Barbrow S, Brush D and Goldman J. (2017). Research data management and services: Resources for novice data librarians; ACRL College and Research Libraries News, 78(5)
The NN/LM PNR is pleased to request proposals for a new round of funding opportunities! NNLM PNR member organizations in Alaska, Idaho, Montana, Oregon, and Washington are eligible to apply. If your organization is not currently a member, it’s easy to join! If you have an idea but are not sure there is a ‘fit’ with these types of awards, please drop us a line (firstname.lastname@example.org). We welcome all questions and input.
Applications submitted by August 15, 2018 will receive fullest consideration. If you plan to submit a proposal, we need a brief statement of intent no later than July 25. Please submit your statement of intent to apply to email@example.com.
Here are brief descriptions and links to detailed information about current funding opportunities:
Community Health Outreach Award, two awards up to $12,000 each.
This award is to support outreach partnership projects with aims to improve access and use of quality online health information for informed decisions about health in underserved communities. Possible ideas for projects include: 1) Developing an actionable and sustainable plan with library specific offerings to address community health priorities; 2) Symposia, or educational events for health care providers or librarians about health literacy and the skills to identify, access, retrieve, evaluate, and use relevant electronic health information resources for patient and consumer health education; 3) Train-the-trainer projects that enhance the skills of library/organization staff and other consumer health information intermediaries to train a target population on locating and evaluating health information; 4) Acquiring and implementing information technology to facilitate access to authoritative health information resources; 5) Health fairs, exhibits and events to increase awareness and use of electronic resources, including NLM resources.
Data Engagement Award, two awards up to $9,500 each.
This award seeks to build partnerships that demonstrate engagement in research and data through the sharing of expertise and resources. Possible activities include: 1) Developing knowledge and skills of librarians, students, researchers, clinicians or public health workforce about best practices for organizing, managing, sharing and visualizing data; 2) Conducting an environmental scan/needs assessment and with key partners, co-create a road map with actionable plans to start a Research Data Management service in the institution; 3) Collaborating with librarians and clinical staff on use of data in Electronic Health Records (EHRs) to improve patient outcomes; 4) Promoting literacy in data science by sponsoring or developing teaching or learning programs or internships with a school of Library and Information Science or other appropriate partner.
Technology Improvement Award, 5 awards up to $5,000 each.
This award seeks to enhance the capacity of a library or community organization to offer electronic health information services to underserved audiences by supporting the purchase, installation, and/or upgrading of hardware and software.
In short, we want to fund good ideas and hope to see proposals from all corners of the NNLM PNR!
Also, if you are interested in support for continuing education, consider applying for a Professional Development Award, to expand professional knowledge and encourage state of the art services to healthcare providers and/or consumers seeking health information.
PubMed Labs is an experimental site being used to test new technologies, features, and directions for PubMed. It’s also a way to offer feedback to the National Library of Medicine for PubMed 2.0, which will be released in December 2018. PubMed Labs, which consists of all the records found in PubMed, is being used to test new and different features as well as including existing features in its interface. The goal is to improve user experience, and additional features are being added all the time.
PubMed Labs includes a new search algorithm that uses machine learning to more accurately find the best matches. There are several unique aspects, including the default for search results (best match), a revamped search results page, and better mobile optimization. Conduct your searches in PubMed Labs to experiment with potential changes and give your feedback. View a 20 minute presentation by Kathi Canese from the National Center for Biotechnology Information (NCBI) at the 2018 Medical Library Association Annual Meeting to learn more.
The next PNR Rendezvous monthly webinar is coming up.
Session title: Unlocking the Potential of De-identified Clinical Datasets
Presenter: Bas de Veer, Bio-Medical Informatics Services Manager for UW Medicine IT Services
When: Wednesday, June 20 starting at 1:00pm PT, Noon Alaska Time, 2:00pm MT
Healthcare systems generate a ton of data on a daily basis. The primary purpose of this data is billing and clinical decision making. But great secondary use of this data is research. This webinar will discuss the potential uses, best practices and common hurdles of de-identified clinical datasets.
Registration is encouraged but not required. However, attending the live session will allow for questions. The session will be recorded and posted on the PNR Rendezvous web page a few days after the live session.
Medical Library Association CE credit is available for both the live and the recorded session.
More information about how to join the session is available on the PNR Rendezvous webpage.
The NNLM PNR supports the professional development of its Network Members in several ways, including:
- PNR Rendezvous
- PNR Professional Development Lending Library
- MLA Webinars
- PNR Professional Development Awards
In addition to our popular PNR Rendezvous, which is a monthly webinar series presented focusing on various topics such as health, research, resources, librarianship, and technology for attendees to incorporate into their work, The NNLM PNR also provides other educational opportunities. The Professional Development Lending Library is a collection of books on topics of interest to medical librarians. Topics included are Administration/Management, Consumer Health, Copyright/Licensing, Data Management, Library Instruction, and Solo Librarianship. Book loans are free to our Network Members. The Medical Library Association provides several educational webinars per year to meet the needs of health information professionals, and the NNLM PNR buys a site license providing access, for which Network Members may register. And, the NNLM PNR also provides Professional Development Awards, which are designed to enable individuals at Network Member institutions to expand professional knowledge through continuing education to provide state of the art services to healthcare providers, researchers and/or consumers seeking health information. Stay tuned for a new round of Professional Development Awards to be announced soon, and please let us know if you have any ideas for additional ways the NNLM PNR can support your professional development.
Do you produce any digital content that is consumed by other humans? (I’m guessing yes.) You should, if you don’t already, consider how you can make it more universally usable! If you work for a university, you are likely already required to adhere to these standards or something similar. There are a lot of design techniques and standards in place to help make all sorts of digital content types accessible to people with a great diversity of abilities and disabilities!
Earlier this month, I attended some presentations at the University of Washington as part of Global Accessibility Awareness Day (GAAD). Every year there are TONS of events all over the world for GAAD, in-person and online, on the topic of accessibility.
This year at the University of Washington, Janelle Raven Apigo showcased various freely available tools which can help you make your websites more accessible: AInspector, WAVE Accessibility Checker, Web Developer Toolbar, and a color contrast checker.
A little later, K Wheeler and Shawn Berg demonstrated the user experience for some of their preferred assistive technologies, including a built-in iPhone feature called “Speak Screen” and a popular screen reader software called “JAWS.” If you have never seen an assistive technology demo—jump at the chance next time you get one! It is very elucidating as to why accessibility is so important, when you hear what a garbled mess it is when screen reader software has to try to make sense of a badly encoded webpage– and more importantly, how easy a page is to understand when just a few sensible practices are employed in its creation!
Perhaps the most fun was getting to try out some assistive technologies that some representatives from WATAP (Washington Assistive Technology Act Program) brought to showcase! Here I am attempting to use a keyboard that is just light projected onto the tabletop. The laptop was also using “Smyle Mouse,” a face detection software that enables you to move the cursor around the screen with head movements, and click by smiling!
Assistive technology is continually advancing, but not everyone has access to the most cutting edge technology. Also, no matter how advanced the technology, if a website or a document is constructed poorly enough, it will be frustrating to people using even the most highly advanced assistive tools. (Garbage in = Garbage Out.) What we all can and should be doing now is learning the basics of how to structure documents and webpages so they are clearly organized, how to create descriptive hyperlinks (hint: avoid the text “click here”) and how to write great alternate text or descriptions for graphics.
For a basic overview of accessibility and how to get started, take a look at the University of Washington’s “Getting Started with Accessibility” page. There are a lot of great resources available for anyone to use!
May 25 begins the era of the GDPR, or, General Data Protection Regulation, a new European program with strong enforcement provisions which sets data protection as a default rather than requiring users to opt-out of entities being allowed to use their data (to put it VERY simplistically). Why should we in the U.S. pay any attention to something applying to European data? Well….
–The coming tide of companies, governments, and others using and combining and potentially misusing our personal data is no longer a swell, it’s a tsunami (says Tom Wheeler of the Brookings Institute). The time to act is now, and Europe’s action will have ripple effects. So it’s a good thing to be aware of the GDPR because something like it will be in our lives eventually (even if not coming soon to a theater near you).
–Even many smaller U.S. companies and organizations, though they don’t have to protect your data under the GDPR, are proactively notifying you that they are taking steps to do so (you’ve probably seen a lot of these notices in your inbox recently–The New York Times suggests you read them).
–Last but not least, it’s a fascinating new conceptualization of our entitlements as online beings! The GDPR arguably “enshrines data protection as a fundamental human right“. It moves the discussion about data and our privacy as individuals WAAAAAY forward and in new directions.
This article, from Vox, puts it well: “…Norms are shifting once more. Looking back, we can frame the development of digital behavior into three phases: First, there was a naiveté phase, where consumers didn’t really understand the technology and what it meant. Then there was the careless phase, where people saw data rights or privacy as either unimportant or an acceptable price of entry to all the good, free stuff. Now it is clear we are entering the demand phase, which sees the emergence of a more savvy, engaged, and alarmed digital consumer — and related movements to create and enforce consumer rights.”
Watch this space–and all of your online presences–for further developments!
Sunday, May 6 was a beautiful sunny day in Pasco, WA for the NIH’s All of Us Research Program National Launch Event to celebrate the opening of program enrollment to adults age 18+ who are living in the United States. NLM through its National Network of Libraries of Medicine is an NIH All of Us strategic partner. NNLM PNR joined with the National Alliance of Hispanic Health (NAHH), Mid-Columbia Libraries, Richland City Public Library and Tri-Cities Community Health along with many other community partners at a Health and Wellness Fair for the Pasco event. The event was held in the Pasco Town Square and featured a main stage with entertainment all day and live-streaming of Dr Francis Collins, Director, NIH, officially launching the event and Eric Dishman, Director, NIH All of Us Research Program, talking about the historic nature of the program and its importance to the future of health. Tania Bardyn, Director, NNLM PNR spoke on the Pasco main stage as did Jane Delgado, President & CEO, NAHH.
Our event had a fiesta feel to it. The NNLM PNR booth was staffed by Cathy Burroughs, Associate Director, NNLM PNR and Michele Spatz, NNLM PNR All of Us Community Engagement Coordinator with assistance from Fanny Cordero, Spanish Interpreter. We shared lots of NLM and All of Us resources throughout the day and yes, even participated in a bit of zumba!
Today’s blog is by Nancy Shin, Sewell Memorial Fund Librarian Fellow at Washington State University’s Elson S. Floyd College of Medicine. Welcome, Nancy!
The most extraordinary thing happened to Washington State University’s Elson S. Floyd College of Medicine (ESFCOM) the weekend of April 13 -15, 2018. ESFCOM hosted its inaugural Hackathon, which was organized by the College Technology Incubator Officer, Andrew Richards. It was well attended by people from all walks of life and subject expertise including students and healthcare providers. So, the big question is what exactly is a hackathon and why all the hype?
A hackathon is a social event that is focused on building small, innovative, and new technology projects. It brings together teams of people to work on a common project within an overarching theme; at the end of the event, teams formally present their projects for judging. The hackathon can last from 4 hours to 1 week (sleep is optional) and can involve large cash purses as prizes. Typically, projects are technological and can result in the development of a new app or feature on a website in response to a theme; in the case of ESFCOM’s Hackathon, the theme was “challenges in rural healthcare.” The common misconception about a hackathon is that it is an event that is strictly designed for computer programmers, engineers, and software developers – i.e. anyone who codes! However, other skills like research, design, project management, data management, and leadership are also important to the dynamic of an ideal hackathon team.
Arguably the first hackathon was hosted by OpenBSD in 1999, which is an operating system; ten developers came together to work on various software problems over the span of a week (Davis, 2016). Since then, hackathons have more famously been hosted by various companies like Facebook and Yahoo in 2005 and 2006, respectively, in order to catalyze new innovations in a relatively “risk-free” and “creative” environment (Davis, 2016). In general, hackathons are organized by one of the following communities: open source software companies, tech companies, sponsored competitions, and community institutions (Davis, 2016).
In the health field, a big community hackathon organizer is the National Institutes of Health (NIH) which often hosts hackathons with a bioinformatics theme. Although the ESFCOM’s Hackathon was heavily inspired by MIT’s “Grand Hack & Hacking Medicine,” what makes the community hackathon at ESFCOM so different and unique from other health hackathons is that it encourages a diverse skillset to tackle healthcare problems. For example, the winning team PTme was made up of a diverse skillset that included developers, medical students, business leaders, and engineering students while my own hackathon team was made up of a mathematician, bioengineer, computer engineer, designer, and health/data librarian. Another unique feature of the ESFCOM’s Hackathon was the involvement of health librarians in the Spokane area in creating a “Research Station” that provided active research and data management for the participating teams. The volunteer librarians were able to provide direct research support to assist with each team’s research and data management needs. It is those two qualities, skill diversity and library support, which makes ESFCOM’s Hackathon one of a kind and a successful model for other health communities/organizations to follow for their future hackathons!
Davis, R. C. (2016). Hackathons for libraries and librarians. Behavioral & Social Sciences Librarian, 35(2), 87-91. doi:10.1080/01639269.2016.1208561
There are over 2.7 million children in the United States who have a parent who is incarcerated. Children who have a parent in prison are impacted in many ways, including mental and physical health. They may face financial hardship, trauma, or social stigma. Disruption of family live may lead to additional problems and negative outcomes for children. Organizations that offer family-oriented support programs for children of incarcerated parents include Youth.gov, which was created by the Interagency Working Group on Youth Programs, composed of representatives from 20 federal agencies that support programs and services focusing on youth. See their resource page for information for parents and caregivers, teachers, and social work and clinical professionals. The U.S. Justice Department’s National Institute of Corrections also provides guidance and links to programs on their Children of Incarcerated Parents page. And the Child Welfare Information Gateway, which is a service of the Children’s Bureau, Administration for Children and Families, U.S. Department of Health and Human Services, provides information on how to support children and families of prisoners. The National Library of Medicine’s MedlinePlus has resources on childhood and teenage depression and trauma and family issues. Public libraries and community-based organizations can help to direct those in need to these resources.
In the NNLM Big Data in Healthcare: Exploring Emerging Roles course, we asked participants, as they progressed through the course to consider the following questions: Do you think health sciences librarians should get involved with big data in healthcare? Where should librarians get involved, if you think they should? If you think they should not, explain why. You may also combine a “should/should not” approach if you would like to argue both sides. NNLM will feature responses from different participants over the coming weeks.
Written by Sara Pimental, Senior Consultant, Kaiser Permanente, San Francisco, CA
My answer to this question is a qualified yes. However, librarians don’t HAVE to get involved to be successful. I think people panic when they think if they don’t get involved in every aspect of new trends in librarianship they will become obsolete. There are many ways to evolve; big data is just one of them.
Since I am involved in one aspect of utilizing Big Data, I would have to say yes, librarians who have the interest, should get their hands dirty. I can see skills that all librarians possess being useful in all aspects of BIG Data. For those more technically inclined, they should go all the way and become data scientists. Many us use have learned programing languages and other similar tasks and could do very well in this area.
For those of us who have no desire to become so technical but have a curious fondness for metadata there are many niches for that type of person. This is where I have landed. I assist not just with taxonomy and metadata for my website but also with linking structured data from the EHR with clinical information available on the website and soon with subscribed third party. I could envision a librarian’s talents also being useful with unstructured data such as the notes in the EHR.
In conclusion, there are a myriad of ways a librarian can get involved with Big Data. In this class we have learned about quite a few of them. I remember when I attended the opening reception at NLM’s Biomedical Informatics Course at Woods Hole, Dr. Lindberg told us we were change agents. I hope some of the participants of this class become just as inspired.