The U.S. Department of Health and Human Services (HHS) has issued a Notice of Proposed Rule Making (NPRM) to revise the Common Rule for the protection of human participants in research. It is now posted on the Federal Register’s public inspection website and will appear on Tuesday, September 8, in the printed version of the Federal Register for a 90-day public comment period. The major reforms propose to: 1) calibrate oversight to level of risk; 2) enhance respect for research participants; 3) facilitate broad participation in research; 4) increase privacy and security safeguards for research with biospecimens and data; 5) simplify consent documents; and 6) streamline IRB review. All interested stakeholders are encouraged to review the proposed revisions and make comments.
Archive for the ‘General’ Category
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!
The National Institutes of Health (NIH) in Bethesda, MD, is seeking applications from exceptional candidates who are energetic, innovative, and solution-oriented for the important position of Director, National Library of Medicine (NLM). This is a senior position with responsibilities focused on the direction and management of the world’s largest biomedical library and electronic information and data resources that are used billions of times each year by millions of people and thousands of computer systems worldwide. The NLM will also move towards becoming the epicenter for biomedical data science, not just at NIH, but across the biomedical research enterprise, and will include the activities initiated under the Big Data to Knowledge program. The NLM has a staff of approximately 1600 employees including full-time equivalency positions, training positions, contractors, volunteers, and guest researchers. The current annual budget is $387,134,000.
Applicants must submit a current CV and bibliography electronically to Ms. Regina Reiter, (301) 402-1130. In addition, applicants must also submit a supplemental narrative statement that addresses the qualifications requirements (not to exceed a total of two pages), a vision statement (not to exceed a total of two pages), and provide the names, titles, email addresses, and telephone numbers of 4-5 references. Applications will be reviewed starting October 20, 2015 and will be accepted until the position is filled.
This position offers a unique and exciting opportunity for an exceptional leader to serve as the chief visionary for NLM and lead all aspects of this highly complex organization. The Director, NLM, serves as the principal advisor to the Director, NIH, concerning matters related to biomedical informatics and access to biomedical information. Applicants must possess a Ph.D., M.D., or comparable doctorate degree in a field of health science plus senior-level scientific experience and knowledge of research programs in one or more areas related to biomedical informatics, computational biology, data science and standards, biomedical communications, and health information technology. The individual should be known and respected, both nationally and internationally, within their profession as someone of scientific prominence, with a distinguished record of research accomplishments and leadership credentials.
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.
In response to a request from the US Congress, NIH is developing a 5-year NIH-wide Strategic Plan to advance its mission and outline a vision for biomedical research that ultimately extends healthy life and reduces illness and disability. NIH senior leadership and staff have developed a proposed framework for the Strategic Plan that identifies areas of opportunity across all biomedicine and unifying principles to guide NIH’s support of the biomedical research enterprise. The Strategic Plan is due to Congress in late December 2015.
NIH has issued a Request for Information (RFI) seeking input from stakeholders throughout the scientific research community and the general public regarding the proposed framework for the NIH-wide Strategic Plan. You are invited to review the framework and submit feedback by visiting the NIH web site or the RFI submission site. Comments are due by August 16.
Stakeholder organizations (e.g., patient advocacy groups, professional societies) are urged to submit a single response reflective of the views of the organization/membership as a whole. NIH will also be hosting webinars to gather additional input in early to mid-August. Your feedback is vital to ensuring that the NIH Strategic Plan positions biomedical research on a promising and visionary path!
How does your web survey look on a handheld device? The Pew Research Center reported that 27% of respondents to one of its recent surveys answered using a smartphone, and another 8% used a tablet. That means over one-third of participants used handheld devices to answer the questionnaire. The lesson learned is unless you are absolutely sure your respondents will be using a computer, you need to design surveys with mobile devices in mind. As a public opinion polling organization, the Pew Center knows effective practices in survey research. It offers advice on developing questionnaires for handhelds in its article Tips for Creating Web Surveys for Completion on a Mobile Device. The top suggestion is to be sure your survey software is optimized for smartphones and tablets. SurveyMonkey fits this criterion, as do many other popular Web survey applications.
Software alone will not automatically create surveys that are usable on handheld devices. It is also important to follow effective design principles, such as keeping it simple and using short question formats. Avoid matrix-style questions. Keep the length of your survey short. And don’t get fancy with questionnaires which include logos and icons, which take longer to load on smart devices. It is also advisable to pilot test questionnaires on computers, smartphones, and tablets, to be sure to offer a smooth user experience to all of your respondents.
This story builder tool available from the CDC Injury Prevention and Control web site involves three steps to produce an attractive, well-written program success story. Each step offers downloadable Microsoft Word documents to walk you through the process.
- Step 1: The worksheets are designed to gather and organize project information for your story. This step could be used as a participatory activity, for example you could pull together your project team or a group of stakeholders to talk through questions in this worksheet. The discussion would help group members articulate the program’s value from their perspective.
- Step 2: This step provides a story builder template to write your story, section by section. Each section has a field to develop a paragraph of your story, with some tips for writing in a compelling, user-friendly way. Each completed field prepares you for the final step.
- Step 3: Here, you can download a layout template, where you transfer the paragraphs from your story builder template into the layout. Because this is a Word document, you can change background design, font, or even the size and placement of pictures and call-out quote boxes.
Sometimes program successes are a well-kept secret, buried deeply in final reports under pages of statistics, tables, and descriptive details. There is a way to shine a stronger light on positive program impacts: program success stories. These are short (1-2 page) narratives designed to educate policy makers, attract partners, and share effective practices among colleagues. The Centers for Disease Control and Prevention deserves credit in leading a program success story movement within the public health sector. Many resources for developing program success stories are available from the CDC’s website. And a quick Google search will turn up many success story web pages from public health departments, such as the following three examples:
- The Ohio Department’s Creating Healthy Communities Program.
- The Minnesota Department of Health’s Statewide Health Improvement Program.
- The CDC Division of Adolescent and School Health.
If you want to create success stories for your program or organization, you need to start with a plan, and establish a routine to collect information in a timely manner. To get started, check out the CDC Division of Oral Health’s Tips for Writing an Effective Success Story. For more details, the CDC offers the workbook Impact and Value: Telling Your Program’s Story. The CDC Division of Adolescent and School Health also has a how-to guide for writing success stories: How to Develop a Success Story. And lastly, you might find Success Story Data Collection Tool to be helpful for organizing and writing your program story. A data collection sheet could be particularly useful if multiple team members are involved in collecting success story data. The data collection tool is available in PDF or Word formats.
A common problem encountered by course designers is finding the ideal image for a lecture or presentation that is not subject to copyright restrictions. But now Stanford University’s Lane Medical Library has announced the development of a new tool, Bio-Image Search, that may make the process easier. This resource provides results of images and diagrams exclusively from medical and scientific organizations, grouped by the degree of restriction to their republication. Anyone with Internet access may use Bio-Image Search. It has access to more than 2 million images and counting!
One of the National Library of Medicine’s most versatile online historical resources is an interactive tool for locating history of medicine collections worldwide: the Directory of History of Medicine Collections. The Directory connects scholars with literature, artifacts, and unique collections in medical history and allows travelers and explorers to discover medical libraries, archives, and museums nearby and around the world. The first edition of the Directory was established in 1990 with 32 initial entries. Each year thereafter, the number of collections continued to grow, and today it contains more than 200 and growing. In 2001, the printed Directory was adapted for the Web, bringing direct access to this resource to the world. The types of collections listed in the Directory range from single subject specialties to those with a general history of medicine coverage.
The Directory underwent a major transformation in 2010 with the development of a fully keyword searchable database. And recently, an interactive map has been added, which links users to collections geographically. Now you can locate collections on the map by selecting the continent from the pull-down menu. You can also drag the map to see what collections are represented internationally. On June 9 a one-hour webinar presentation with the features of the Directory was hosted by the NN/LM Middle Atlantic Region. The session will be publicly archived for future viewing.