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MOBILE, Ala. -- Nov. 28, 2018 - When the doctor says cancer, it’s hard to think of any response at all. You certainly have questions though you may not think of them until hours or days later — long after your chance to ask the physician standing in front of you.
When you do speak with doctors and nurses again, you may start with the most basic questions, answers you could likely find online, if only you knew where to look. So your serious questions often remain unanswered while you struggle through the basics.
With a goal of providing families up-to-date and accurate health information when they need it most, Outreach Librarian Rachel Fenske applied for and received two grants to make quality health information easily accessible to patients and caregivers at USA Children’s & Women’s Hospital and USA Health University Hospital.
The grants, totaling $20,000, were from the National Network of Libraries of Medicine Southeastern Atlantic Region, (NNLM SE/A). Fenske works in the Information Services division of the Baugh Biomedical Library at the University of South Alabama and often works with families at both hospitals.
The goal, says Fenske, is to provide information that’s accurate, easy to understand, timely and accessible. You can’t expect the parents of a premature baby to wade through a medical textbook at the biomedical library. And looking up questions at random internet sites is as likely to provide wrong answers as right ones.
The right answers are out there, Fenske knows, but can be hard to find for a panic-stricken parent.
The grants allowed for the purchase of Android tablet computers and rolling stands to make them easy to handle. The computers have been outfitted with links to MedlinePlus, and other reputable consumer health resources from the National Library of Medicine (NLM) and the National Institutes of Health (NIH). In addition, hundreds of easy-to-understand X-Plain ® health videos on medical conditions and procedures have been downloaded for patients and their caregivers to access.
Downloading the materials lets parents and patients go directly to the information they need without struggling through internet passwords and wifi connections. If parents need more information, they can easily go to the NLM and NIH resources from home. The health videos, however, are only available at the hospital.
At the patient bedside, nurses and nurse educators show families how to use the tablets to access all the quality health resources at a time when they can mentally absorb the material and during times while their child dozes.
Many of the resources are also in Spanish, so enabling the parents to read materials in their native language empowers them with the necessary tools to make good health decisions for their child. Reading through the material helps parents formulate more focused questions when they see their physician or other health care team members.
Good resources are definitely available, Fenske says. It’s just that it can be difficult to tell the accurate from the inaccurate, the scientific from the urban legend especially when people begin their searches with Google. That’s the beauty of having access to materials from the National Library of Medicine — the world’s largest and most respected biomedical library, says Fenske. In addition, the videos from the Patient Education Institute are produced with simple and clear language and provide questions with reinforcing feedback to test knowledge.
“Even the most involved topics are presented in an easy-to-understand manner,” says Fenske.
So far she has been delighted with feedback.
“Even people who know a lot feel they learned more about the condition after viewing the videos” she says.
The program seems entirely worthwhile when the father of a child with multiple rare disorders tells her that before the new program, he didn’t know where to turn. His daughter had struggled with health problems for five years before the project connected him with reliable information that he could easily understand.
Beyond such anecdotes, Fenske says that during follow-up interviews, those using the materials said they enjoy using the tablets to locate quality and current health information. In addition, they have become more confident in locating MedlinePlus information and say they plan to use the resources again from home.
That’s one of the goals, Fenske says — “to learn to use resources not only at the hospital but also from home.”
By providing access to health information in various formats, patients and parents can take an active role in understanding their health conditions and become more engaged in their medical care. “Our overall goal is to improve health outcomes,” she adds, “to teach people how to find quality information not only at the time of need, but also beyond.”
© 2018 USA Health