Trudy Triumph's Neurogenic Bladder Blog

Reliable Medical Information for the Patient from a Biosleuth

Does it Keep You Up at Night? How to Find Reliable Medical Information In-Between Doctor Appointments

So, you had your doctor’s appointment in the morning and you’re replaying the appointment again in your head. The doctor reviewed your health status and gave you a list of “To Do” items that he’d like for you to try:
• Eat more fibrous vegetables and less red meat
• the ever touted More Exercise
• and “#^*^+*%$@”? – What does that even mean?
• And what about ____? (I just thought of the burning question I wanted to ask)

It’s okay, I have Options — I can:

A. Call back and schedule an appointment and wait for 3 weeks
B. Call his nurse and see if she can pass my questions along to the doctor and wait for a call back
AND/OR
C. I can proactively seek information from authoritative health websites and read up a bit on the topic of my question so I am better prepared when I get that call back and for my next appointment with the doctor

BUT, How do I know I am reading reliable information?

A search of the Internet should always be done with the thought in mind that ANYONE can be the author behind that webpage. In fact, if you are reading this blog, do you know who I am? I am a Medical Research Librarian with a subject specialization in Bio-pharmaceutics and a Public Health degree in Pathobiology [which translates to “Prevention of Infectious Disease”]. Nice to meet you! I am co-author of the book, Beyond Embarrassment: reclaiming your life with neurogenic bladder and bowel, which grew out of the posts on this blog and addresses the health concerns of Trudy and others like her, who deal with continence issues every day.

Trudy and I have just returned from the 2017 BlogHer conference, where we were challenged and inspired to keep this blog vibrant. If you are a visiting blogger, perhaps checking out TrudyTriumph.com for the first time – Welcome! We hope you continue to visit our page . . . please leave a comment for us, so we can reach out and . . . if you have a suggestion for a future post, we’d love to hear it.

Getting back to that burning question . . . I’d like to discuss some options you have regarding finding good reliable health information with tools available to anyone with a computer connection or smart phone. I am kicking off this series of posts, which will explore the use of medical information research tools over the course of the next few months.

NOTE: if you don’t have ready access to a computer at home, you can visit your local Public Library or Consumer Health Library near you (FYI – state-funded university libraries also usually provide “Public terminals”). You might have to sign up for a session. The reference librarian on-staff can help point you in the right direction! Use these public resources – they represents you tax dollars at work!

Where do YOU usually start a search for Information?

Google Search – Google is by far the leading search engine people turn to – with an estimated 1,800,000,000 monthly users, followed by Bing, Yahoo, and Baidu, each with an estimated 480 – 500 million monthly visitors [see the May 2017 eBizMBA Ranking, http://www.ebizmba.com/articles/search-engines]. So, you likely start with your “favorite” search engine to find information . . .

Books – Alternatively, many people look for a health book that might have “the answers”.

Trudy and I live in the Pacific Northwest, so often, we turn to Amazon to browse their “Catalog”.
An Amazon search retrieves 2 books under “Underactive Bladder”
– the textbook, by that title, written for Urologists by Dr. Michael B. Chancellor
– our book, written for the patient, “Beyond Embarrassment: reclaiming your life with Neurogenic Bladder and bowel”

– “Neurogenic Bladder” retrieves 51 items, the vast majority of which are written for the physician.

Knowledge Nugget: to force the search engine to combine multiple words as a phrase, the use of quotes is the general “standard”. Put any “phrases in quotes” to avoid/reduce irrelevant results. (I encourage you to try your search with and without quotes to see the difference in the results you retrieve!)

Use of Authenticated Specialty Sites to Search for Health Information – Here are a few of many sites you might choose from to locate current vetted information that has been reviewed by physicians in an effort to provide the most reliable and accurate information available (as far as current medical practice/understanding). Over the course of this series of blogs on Retrieval of validated health information for patients/consumers,

I will explore and demo each of these resources.

• MedlinePlus [https://medlineplus.gov/] provides curated consumer health information in English and Spanish

• MeSH [Medical Subject Headings; https://www.ncbi.nlm.nih.gov/mesh/]

• Medscape [http://www.medscape.com/]

• CDC “Get Smart” Pages For Patients [https://www.cdc.gov/getsmart/community/for-patients/index.html]

• Mayo Clinic Patient Care [http://www.mayoclinic.org/patient-care-and-health-information]

• PubMed [www.pubmed.gov/]

• PubMed Health [https://www.ncbi.nlm.nih.gov/pubmedhealth/]

WebMD – Better information. Better health. [http://www.webmd.com/a-to-z-guides/common-topics]

Apps for your Smart Phone

• Medscape

• WebMD

• Clinical Trial Search [clinicaltrials.gov]

• PubMed4Hh [for Handhelds]

• PubChase

• Unbound Medicine Prime

• Corporate Sponsored Health Information

• MedInfo (Amgen)

• Medical Info (Novartis)

• Merck Manual for Consumers (Merck & Co. Inc.)

Let’s begin with an example search within MedlinePlus [https://medlineplus.gov/]

MedlinePlus launched in October 1998, by the National Library of Medicine to provide an online tool that is both easy to use and supplies reliable health information, in a format accessible to the general lay-person. (In contrast to PubMed, which was originally geared toward the medical professional.) MedlinePlus initially provided 22 health topics in English, which has expanded to almost 1000 health topics in English and Spanish, including reference books, government health agency websites and research foundations pertinent to the topic and offers links to health information in over 40 languages [Wikipedia, accessed June 24,2017, 
https://en.wikipedia.org/wiki/MedlinePlus]. MedlinePlus is always a good choice of basic information when you are getting started on a health-related information search and you can depend on the fact that the information is being updated as medical knowledge progresses and is not biased.

Type the address into the browser: https://medlineplus.gov/
For the sake of an example – Let’s find relevant information related to problems with controlling bladder contractions. Type “Underactive Bladder” or “Neurogenic Bladder” in the search box in the upper right-hand corner and hit “Go”

The first result is usually the article on the topic from within the MedlinePlus collection. In this case it is an article from the medical encyclopedia on “Neurogenic Bladder” [https://medlineplus.gov/ency/article/000754.htm].
Let’s take a tour of the information path you might follow to find more on a variety of questions that possibly keep you up at night . . .

Keep scrolling down the page, and you’ll see Symptoms, Treatment guidelines and Support Groups

By clicking on the link to Organizations (under Support Groups), you discover even more information resources and organizations involved in supporting this patient community.

You can Further Explore any topics in “Blue” which take you to a new page. This is how you discover a wealth of information . . . just by following “links.”

Click on the Main Heading, Urinary incontinence – to find out even more:

This page contains a wealth of information! Besides Diagnostics and Tests, you’ll also find information on Treatments, Patient groups, Clinical Trials and Patient Handouts with links on the right side-bar to information in various languages including Arabic, Chinese, French, Russian, Somali and Spanish.

A.
If you click on the related broader topic heading, Urinary Tract Health, you are taken to a page hosted by another government institution (The National Institute of Child Health and Human Development, NICHHD) that provides information on some basic health problems resulting from a bladder that is not functioning normally – including UTI (Urinary Tract Infections)

 

B.
Go back to the previous site on MedlinePlus, and continuing down to “Specifics” –

See the link to Bladder Control Problems & Nerve Disease (which takes you to another major source of information provided by the US Federal government on Kidney and Urinary Tract disease (NIDDK – the National Institute of Diabetes and Digestive and Kidney Disease).

The page describing Underactive Bladder, specifically, Urinary Retention is linked from the left-hand navigation bar for “Urologic Diseases” from this page:

This page contains a wealth of information . . . keep reading to hopefully find some answers.

But, if you need still more information, you can turn to another tool to dig deeper — looking at still more sources of information. Don’t forget to check the source behind the information your read – it’s a basic practice, “Be Discriminating”, when reviewing anything on the Internet. We’ll continue our look at other sources . . . next time!

Julia Parker
Julia@trudytriumph.com

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