Researchers looking for places to publish and manage data have a few options in the US Department of Health & Human Services Registry of Patient Registries, the Open Knowledge Foundation’s Datahub, and the German Research Foundation’s re3data.
The Registry of Patient Registries allows registry owners to provide information “intended to promote collaboration, reduce redundancy, and improve transparency among registry holders.” The Agency for Healthcare Research and quality intends that this registry provides useful information for work involving clinicaltrials.gov.
Fore more general datasets, Datahub is a CKAN-based tool that allows users to “browse and find the data they need, and preview it using maps, graphs and tables – whether they are developers, journalists, researchers, NGOs, citizens or your own colleagues.” Datahub also allows users to maintain their own datasets and to sign up to receive updates about datasets related to groups of interest.
re3data is another option for storing and accessing data from a variety of academic fields. It offers a permanent storage solution for scholarly data and “promotes a culture of sharing, increased access and better visibility” of information.
Researchers who use Endnote on their desktop or through Web of Science can now use Endnote online (formerly Endnote Web) to conveniently create, manage, and share working bibliographies, to format research, and even to match manuscripts to appropriate journals. More information is available through endnote’s online training or on YouTube.
When headlines risk misinforming the public, the Health News Review acts as a valuable resource, parsing out the story behind the sound bite. The website’s team of reviewers tackle news stories and news releases, run a blog that evaluates the media’s portrayal of various health related headlines, and even offer toolkits to help readers become informed consumers of health news (and to help journalists become better purveyors of public health information!).
The writers of the site recognize that certain topics (stem cell research, genetics and biotech) tend to be sensationalized by the media, and that medical research is often far more complex than its depiction in a popular news outlet. As a result, consumers of health information are often left relying on simplified information that leaves out crucial details. Articles like “7 Words (and more) You Shouldn’t Use in Medical News” and “Tips for Understanding Studies” seek to inform all involved in health news, from its creation to its consumption.
The site seeks to “improve public dialogue about health care by helping consumers critically analyze claims about health care interventions and by promoting the principles of shared decision-making reinforced by accurate, balanced and complete information about the tradeoffs involved in health care decisions.” The content of the Health News Review allows us to demand more from medical news in general, as well as to deepen the patient-doctor dialogue of the day-to-day.
In our ongoing effort to promote health literacy, Library & Knowledge Services invites you to learn about Colorado Crisis Services, “Colorado’s first statewide resource for mental health, substance use or emotional crisis help, information and referrals.”Colorado Crisis Services offers various levels of support for individuals dealing with mental health, substance use, or emotional issues. The support is confidential; the public can access a crisis support line or visit one of several walk-in centers/stabilization units located throughout Colorado, including the Western Slope. Help is available for non-English speakers as well. The services are open to all, and no one is turned away for inability to pay.
Colorado Crisis Services’ mental health professionals can also provide referrals for mobile care, sending help to those who can’t make it to a center. Respite care may be available for those needing continued assistance for 1-14 days, as determined after an in-person meeting by a Crisis Services Clinician. Those in need can call 1-844-493-8255, text TALK to 38255, or chat with a Crisis Services Clinician through the website: http://coloradocrisisservices.org/.
In our June Library & Knowledge Services newsletter, we show you how to use ClinicalKey to create dynamic presentations and how to search our subscription database, Natural Medicines. You’ll also find a highlight of National Jewish Health’s collaborative research efforts on scleroderma, and a look at why information from WebMD should be treated with caution.
Read the June newsletter.
May brought the American Thoracic Society conference and World No Tobacco Day. We highlighted the Asthma@Point of Care app and the Learn.Genetics website.