NIH encourages the use of common data elements (CDEs) in clinical research, patient registries, and other human subject research in order to improve data quality and opportunities for comparison and combination of data from multiple studies and with electronic health records. The NIH Common Data Element Resource Portal provides access to information about NIH-supported CDEs, as well as tools and resources to assist investigators developing protocols for data collection. In addition, the session recording and presentation slides for the 90-minute webinar “NIH Common Data Element (CDE) Initiatives – Overview,” held on September 8, are available for viewing.
Archive for the ‘Non-NLM Resources’ Category
Forget about elevator speeches. Think elevator conversations instead. Elevator pitches are one of a number of strategies you may use to stealthily promote your organization’s successful programs and services, which generally consist of little promotional speeches of elevator-ride length that you can slip into small talk when you run in to “someone influential.” You can add nuggets of evaluation findings to these mini-speeches to demonstrate program value. But you may be missing a key element in the elevator pitch exchange: the other person. For insight, review the article by Tim David, Your Elevator Pitch Needs an Elevator Pitch, which appeared in the Harvard Business Review (10 December 2014), and emphasizes the importance of engaging your fellow elevator traveler, rather than talking “at” him or her. This leads to a conversation rather than a speech. It is notable how the author seamlessly slips in evidence to support his low-key pitch. For example, he surreptitiously inserts a statistic that he must have obtained from a follow-up evaluation with one of his client organizations that productivity and morale increased 38% after his training, to help underscore the value his service provided to the organization.
Here are several other tips from the article:
- Answer polite but perfunctory questions (such as “what does your office do?”) with a surprising answer.
- Use questions to draw your elevator companion into the conversation. David suggests that you talk no more than 20% of the time. Yield the remainder of the time to the other traveler, but use questions to keep the conversation rolling.
- Don’t worry too much about that 20-second time frame traditionally recommended for elevator pitches. If you successfully engage your fellow rider, he or she will hold the elevator door open to continue the chat.
The elevator pitch format is a good addition to your story-telling tool kit. But it may take some practice to be able to present an elevator pitch casually and conversationally. If you’re up for that challenge, then check out Tim David’s article for some excellent guidelines!
The National Institute of Arthritis and Musculoskeletal and Skin Disease (NIAMS), part of the National Institutes of Health, has launched a new Spanish-language website that provides free health information on conditions of the bones, joints, muscles and skin. The site is being launched to coincide with National Hispanic Heritage Month. Increasingly, website traffic to NIAMS’ Spanish-language content represents about 50% of its total visits in a given month. To meet this high demand, the new site features quick and easy navigation tools to help Spanish-speaking individuals identify and locate NIAMS health topics. It also includes landing pages that provide all of the information offered on a given topic in one place. The website also offers:
- New site features navigation tools to help Spanish-speaking individuals locate NIAMS health topics
- Improved access to NIAMS’ Spanish-language health information and related federal resources
- Information on participating in clinical research studies
- Responsive design that makes the site easier to read on mobile devices
NIAMS is committed to providing health information that is culturally and linguistically appropriate for diverse populations, including underserved racial and ethnic communities. The NIAMS Spanish-language materials complement the institute’s entire suite of health resources that are part of its National Multicultural Outreach Initiative, many of which are also available in Chinese, Korean and Vietnamese.
Recently the NN/LM Outreach Evaluation Resource Center (OERC) investigated web sites offering reviews of multiple online survey tools, yielding the following list of five resources as a starting point. In addition, there are individual reviews of online survey products on a variety of websites and blogs, which are not included in this list.
Zapier.com’s Ultimate Guide to Forms and Surveys, Chapter 7 “The 20 Best Online Survey Builder Tools”
This resource compares 20 different online survey tools. There is a chart with a brief statement of what each survey tool does best, what you get for free, and the lowest plan cost. Additionally, there is a paragraph description of each tool and what it does best. Note: this is part of an eBook published in 2015 which includes chapters like “The Best Online Form Builders for Every Task.”
Appstorm.net’s “18 Awesome Survey & Poll Apps”
This review was posted on May 27, 2015, which reassures that the information is most likely up to date. While there are very brief descriptions, it is good for a quick comparison of the survey products. Each review includes whether or not there is a free account, if the surveys can be customized, and whether or not there are ready-made templates.
Capterra.com’s “Top Survey Software Products”
This resource appears almost too good to be true. However, no date shown means that the specificity in the comparisons might not be accurate. Nevertheless, this website lists over 200 survey software products, has separate profile pages on each product (with varying amounts of detail), and lists features that each product offers. You can even narrow down the surveys you are looking for by filtering by feature. Hopefully the features in Capterra’s database are kept updated for each product. One thing to mention is that at least two fairly well-known survey products are not in their list.
AppAppeal.com’s “Top 31 Free Survey Apps”
Another review site with no date listed. This one compares 31 apps by popularity, presumably in the year the article was written. One thing that is unique about this review site is that the in-depth review includes the history and popularity of the app, the differences of each app to other apps, and recommended users for each app. Many of the reviews include videos showing how to use the app.
TopTenReviews.com’s 2015 Best Survey Software Reviews and Comparisons
This website has the feel of Consumer Reports. It has a long article explaining why you would use survey software, how and what the reviewers tested, and the kinds of things that are important when selecting survey software. Also like Consumer Reports, it has ratings of each product (including the experiences of the business, the respondents, and the quality of the support), and individual reviews of each product showing pros and cons. With the date included in the title of the review, the information is most likely current.
Juice Analytics has developed a practical guide to explore how data visualization and storytelling techniques can mix, 30 Days to Data Storytelling. The guide provides a checklist of daily activities lasting no longer than 30 minutes per day. Activities include articles to read, videos to watch, or small projects to complete. The guide links to data visualization and storytelling resources from sources as varied as Pixar, the Harvard Business Review, Ira Glass, the New York Times, and Bono, the lead singer of U2. Use the techniques in this guide to tell a story to report your evaluation data so it gets the attention it deserves!
Data management activities present opportunities for librarians to adopt new roles and support the research process in their institutions. There is a variety of educational resources available to librarians wishing to get started in this field and learn more about data management and related functions. One example is MANTRA: Research Data Management Training, an online course sponsored by the University of Edinburgh, which is freely available to anyone to explore. It consists of nine online units, such as “Organising Data,” Storage & Security,” and “Sharing, Preservation, & Licensing.” Each unit takes up to one hour to complete, plus time for further reading and data handling exercises. The current course content represents the fourth release of MANTRA in September, 2014. Data Management for Clinical Research is a five-week free online course offered by Coursera. It utilizes best-practice guidelines, along with hands-on demonstrations and exercises, to cover important concepts related to research data collection and management, with a primary focus on data management for patient-centered research. The Medical Library Association also offers continuing education opportunities related to data management.
In addition to these courses, a Mendeley group, Data Management for Librarians, is an active community created for librarians of all disciplines to share literature and resources about data management and related areas. Members are also encouraged to share their experiences working with data in their institutions. Another introductory resource is the article “Research Data Management,” by Alisa Surkis, PhD, MLS; and Kevin Read, MLIS, MAS; both of NYU Health Sciences Library, published in the July 2015 issue of the Journal of the Medical Library Association.
Mission statements are important. Organizations use them to declare to the world how their work matters. For employees, they guide efforts toward supporting organizational priorities. And mission statements are important to evaluators, because evaluation methods are ultimately designed to assess an organization’s value. Having those values explicitly stated is very helpful. The Nonprofit Hub’s document A Step-By-Step Exercise for Creating a Mission Statement is a tool that succintly lays out an effective 1-2 hour process to engage multiple stakeholders in the development of a mission statement, starting with a foundation of shared stories about the organization’s best work. In the end, everyone understands and endorses the mission statement because they helped develop it.
This exercise has potential that reaches beyond development of mission statements. It would be a great exercise for advisory groups to contribute their ideas about future activities, based on the organization’s past successes. The stories generated are data that can be analyzed for organizational impact. The group qualitative analysis process, alone, could be adapted to other situations. For example, a small project team could use the process to analyze stories from interviews, focus groups, or even written comments to open-ended survey questions.
The U.S. Department of Health and Human Services launched the first online collection of the federal resources and capabilities available to mitigate the health impacts of emergencies. The HHS Office of the Assistant Secretary for Preparedness and Response (ASPR) sponsored the HHS Response and Recovery Resources Compendium to aid state, tribal, territorial, and local officials in health and emergency management as they guide communities in responding to and recovering from disasters.
The compendium offers an easy-to-navigate, comprehensive, web-based repository of HHS products, services and capabilities available to state, state, tribal, territorial, and local agencies before, during, and after public health and medical incidents. The information spans 24 categories, and each category showcases the relevant disaster resources available from HHS and partner agencies, a brief description of each resource and information on accessing each one. Categories range from patient movement to hospital care and from situational awareness to decontamination. Resources include platforms such as GeoHEALTH and the HHS emPOWER Map that use Geographic Information System capabilities to support health response as well as consultation services, such as emergency planning, disease surveillance and tracking, and food, drug and device safety. Resources also include personnel, such as medical staff from the U.S. Public Health Service and National Disaster Medical System who can deploy to communities to augment local hospital, shelter or public health staff. The compendium will be updated regularly and expanded as federal agencies add products, capabilities and services to help communities prepare for, respond to, and recover from the health impacts of disasters.
The U.S. Department of Agriculture (USDA) and National Institutes of Health have partnered to add the NIH Body Weight Planner to USDA’s SuperTracker online tool as a goal-setting resource to help people achieve and stay at a healthy weight. Created in 2011, the SuperTracker tool empowers people to build a healthier diet, manage weight, and reduce risk of chronic disease. Users can determine what and how much to eat; track foods, physical activities, and weight; and personalize with goal setting, virtual coaching, and journaling. With science-based technology drawing on years of research, the Body Weight Planner will enable SuperTracker’s more than 5.5 million registered users to tailor their plans to reach a goal weight during a specific timeframe, and maintain that weight afterward.
The math model behind the Body Weight Planner, an online tool published by NIH in 2011, was created to accurately forecast how body weight changes when people alter their diet and exercise habits. This capability was validated using data from multiple controlled studies in people. More than two-thirds of American adults are overweight or obese. Maintaining a healthy weight can help prevent complications related to overweight and obesity such as heart disease, type 2 diabetes and certain types of cancer, some of the leading causes of preventable death.
The latest version of Health and Medical Reference Guidelines, developed by the Reference Services Section’s (RSS) Health & Medical Reference Committee of ALA’s Reference & User Services Association (RUSA), was approved by the RUSA Board at the ALA annual conference in June, 2015. These guidelines are for all information services staff, regardless of questions or library type. Health and Medical Reference refers to questions that pertain to any aspect of health, medicine, or biomedicine, including but not limited to consumer health, patient health, public health, environmental health, complementary and alternative medicine, biomedical research, and clinical medicine.
The purpose of these guidelines is to assist staff in responding to health or medical inquiries. For staff who rarely answer medical questions, the Guidelines are intended to assist staff to be prepared and feel confident that they are providing the best possible response. For staff who regularly answer medical questions, the Guidelines are intended to ensure that reference skills are well-rounded.