The Official Patient's Sourcebook on Lupus (19 page)

guidelines, commonly referred to as “clinical” or “professional” guidelines,

you can visit the following Institutes:

· Office of the Director (OD); guidelines consolidated across agencies

available at
http://www.nih.gov/health/consumer/conkey.htm

· National Institute of General Medical Sciences (NIGMS); fact sheets

available at
http://www.nigms.nih.gov/news/facts/

· National Library of Medicine (NLM); extensive encyclopedia (A.D.A.M.,

Inc.) with guidelines:

http://www.nlm.nih.gov/medlineplus/healthtopics.html

· National Institute of Diabetes and Digestive and Kidney Diseases

(NIDDK); guidelines available at

http://www.niddk.nih.gov/health/health.htm

100 Lupus Nephritis

NIH Databases

In addition to the various Institutes of Health that publish professional

guidelines, the NIH has designed a number of databases for professionals.
28

Physician-oriented resources provide a wide variety of information related

to the biomedical and health sciences, both past and present. The format of

these resources varies. Searchable databases, bibliographic citations, full text articles (when available), archival collections, and images are all available.

The following are referenced by th
e National Library of Medicine:29

·
Bioethics:
Access to published literature on the ethical, legal and public policy issues surrounding healthcare and biomedical research. This

information is provided in conjunction with the Kennedy Institute of

Ethics located at Georgetown University, Washington, D.C.:

http://www.nlm.nih.gov/databases/databases_bioethics.html

·
HIV/AIDS Resources:
Describes various links and databases dedicated

to HIV/AIDS research:

http://www.nlm.nih.gov/pubs/factsheets/aidsinfs.html

·
NLM Online Exhibitions:
Describes “Exhibitions in the History of

Medicine”:
http://www.nlm.nih.gov/exhibition/exhibition.html
.

Additional resources for historical scholarship in medicine:

http://www.nlm.nih.gov/hmd/hmd.html

·
Biotechnology Information:
Access to public databases. The National

Center for Biotechnology Information conducts research in

computational biology, develops software tools for analyzing genome

data, and disseminates biomedical information for the better

understanding of molecular processes affecting human health and

disease:
http://www.ncbi.nlm.nih.gov/

·
Population Information:
The National Library of Medicine provides

access to worldwide coverage of population, family planning, and related

health issues, including family planning technology and programs,

fertility, and population law and policy:

http://www.nlm.nih.gov/databases/databases_population.html

·
Cancer Information:
Access to caner-oriented databases:

http://www.nlm.nih.gov/databases/databases_cancer.html

28 Remember, for the general public, the National Library of Medicine recommends the databases referenced in MEDLINE
plus
(
http://medlineplus.gov/
or
http://www.nlm.nih.gov/medlineplus/databases.html
).

29 See
http://www.nlm.nih.gov/databases/databases.html
.

Physician Guidelines and Databases 101

·
Profiles in Science:
Offering the archival collections of prominent

twentieth-century biomedical scientists to the public through modern

digital technology:
http://www.profiles.nlm.nih.gov/

·
Chemical Information:
Provides links to various chemical databases and references:
http://sis.nlm.nih.gov/Chem/ChemMain.html

·
Clinical Alerts:
Reports the release of findings from the NIH-funded clinical trials where such release could significantly affect morbidity and

mortality:
http://www.nlm.nih.gov/databases/alerts/clinical_alerts.html

·
Space Life Sciences:
Provides links and information to space-based

research (including NASA):

http://www.nlm.nih.gov/databases/databases_space.html

·
MEDLINE:
Bibliographic database covering the fields of medicine,

nursing, dentistry, veterinary medicine, the healthcare system, and the

pre-clinical sciences:

http://www.nlm.nih.gov/databases/databases_medline.html

·
Toxicology and Environmental Health Information (TOXNET):

Databases covering toxicology and environmental health:

http://sis.nlm.nih.gov/Tox/ToxMain.html

·
Visible Human Interface:
Anatomically detailed, three-dimensional

representations of normal male and female human bodies:

http://www.nlm.nih.gov/research/visible/visible_human.html

While all of the above references may be of interest to physicians who study

and treat lupus nephritis, the following are particularly noteworthy.

The Combined Health Information Database

A comprehensive source of information on clinical guidelines written for

professionals is the Combined Health Information Database. You will need

to limit your search to “Brochure/Pamphlet,” “Fact Sheet,” or “Information

Package” and lupus nephritis using the “Detailed Search” option. Go

directly to the following hyperlink:
http://chid.nih.gov/detail/detail.html
. To find associations, use the drop boxes at the bottom of the search page where

“You may refine your search by.” For the publication date, select “All

Years,” select your preferred language, and the format option “Fact Sheet.”

By making these selections and typing “lupus nephritis” (or synonyms) into

the “For these words:” box above, you will only receive results on fact sheets dealing with lupus nephritis. The following is a sample result:

102 Lupus Nephritis

The NLM Gateway
30

The NLM (National Library of Medicine) Gateway is a Web-based system

that lets users search simultaneously in multiple retrieval systems at the U.S.

National Library of Medicine (NLM). It allows users of NLM services to

initiate searches from one Web interface, providing “one-stop searching” for

many of NLM’s information resources or databases.
31 One target audience

for the Gateway is the Internet user who is new to NLM’s online resources

and does not know what information is available or how best to search for it.

This audience may include physicians and other healthcare providers,

researchers, librarians, students, and, increasingly, patients, their families, and the public.
32
To use the NLM Gateway, simply go to the search site at
http://gateway.nlm.nih.gov/gw/Cmd
. Type “lupus nephritis” (or synonyms) into the search box and click “Search.” The results will be presented in a

tabular form, indicating the number of references in each database category.

Results Summary

Category

Items Found

Journal Articles

5040

Books / Periodicals / Audio Visual

18

Consumer Health

20

Meeting Abstracts

1

Other Collections

0

Total 5079

30 Adapted from NLM:
http://gateway.nlm.nih.gov/gw/Cmd?Overview.x
.

31 The NLM Gateway is currently being developed by the Lister Hill National Center for Biomedical Communications (LHNCBC) at the National Library of Medicine (NLM) of the National Institutes of Health (NIH).

32 Other users may find the Gateway useful for an overall search of NLM’s information resources. Some searchers may locate what they need immediately, while others will utilize the Gateway as an adjunct tool to other NLM search services such as PubMed® and MEDLINEplus®. The Gateway connects users with multiple NLM retrieval systems while also providing a search interface for its own collections. These collections include various types of information that do not logically belong in PubMed, LOCATORplus, or other established NLM retrieval systems (e.g., meeting announcements and pre-1966 journal citations). The Gateway will provide access to the information found in an increasing number of NLM retrieval systems in several phases.

Physician Guidelines and Databases 103

HSTAT
33

HSTAT is a free, Web-based resource that provides access to full-text

documents used in healthcare decision-making
.34 HSTAT’s audience

includes healthcare providers, health service researchers, policy makers,

insurance companies, consumers, and the information professionals who

serve these groups. HSTAT provides access to a wide variety of publications,

including clinical practice guidelines, quick-reference guides for clinicians, consumer health brochures, evidence reports and technology assessments

from the Agency for Healthcare Research and Quality (AHRQ), as well as

AHRQ’s Put Prevention Into Practice
.35 Simply
search by “lupus nephritis”

(or synonyms) at the following Web site:
http://text.nlm.nih.gov
.

Coffee Break: Tutorials for Biologists
36

Some patients may wish to have access to a general healthcare site that takes

a scientific view of the news and covers recent breakthroughs in biology that

may one day assist physicians in developing treatments. To this end, we

recommend “Coffee Break,” a collection of short reports on recent biological

discoveries. Each report incorporates interactive tutorials that demonstrate

how bioinformatics tools are used as a part of the research process.

Currently, all Coffee Breaks are written by NCBI staff
.37 E
ach report is about 400 words and is usually based on a discovery reported in one or more

articles from recently published, peer-reviewed literature.
38 This sit
e has new 33 Adapted from HSTAT:
http://www.nlm.nih.gov/pubs/factsheets/hstat.html
.

34 The HSTAT URL is
http://hstat.nlm.nih.gov/
.

35 Other important documents in HSTAT include: the National Institutes of Health (NIH) Consensus Conference Reports and Technology Assessment Reports; the HIV/AIDS

Treatment Information Service (ATIS) resource documents; the Substance Abuse and Mental Health Services Administration’s Center for Substance Abuse Treatment (SAMHSA/CSAT) Treatment Improvement Protocols (TIP) and Center for Substance Abuse Prevention (SAMHSA/CSAP) Prevention Enhancement Protocols System (PEPS); the Public Health Service (PHS) Preventive Services Task Force’s
Guide to Clinical Preventive Services
; the independent, nonfederal Task Force on Community Services
Guide to Community Preventive
Services
; and the Health Technology Advisory Committee (HTAC) of the Minnesota Health Care Commission (MHCC) health technology evaluations.

36 Adapted from
http://www.ncbi.nlm.nih.gov/Coffeebreak/Archive/FAQ.html
.

37 The figure that accompanies each article is frequently supplied by an expert external to NCBI, in which case the source of the figure is cited. The result is an interactive tutorial that tells a biological story.

38 After a brief introduction that sets the work described into a broader context, the report focuses on how a molecular understanding can provide explanations of observed biology and lead to therapies for diseases. Each vignette is accompanied by a figure and hypertext links that lead to a series of pages that interactively show how NCBI tools and resources are used in the research process.

104 Lupus Nephritis

articles every few weeks, so it can be considered an online magazine of sorts, and intended for general background information. You can access the Coffee

Break Web site at
http://www.ncbi.nlm.nih.gov/Coffeebreak/
.

Other Commercial Databases

In addition to resources maintained by official agencies, other databases exist that are commercial ventures addressing medical professionals. Here are a

few examples that may interest you:

·
CliniWeb International:
Index and table of contents to selected clinical information on the Internet; see
http://www.ohsu.edu/cliniweb/
.

·
Image Engine:
Multimedia electronic medical record system that

integrates a wide range of digitized clinical images with textual data

stored in the University of Pittsburgh Medical Center’s MARS electronic

medical record system; see the following Web site:

http://www.cml.upmc.edu/cml/imageengine/imageEngine.html
.

·
Medical World Search:
Searches full text from thousands of selected

medical sites on the Internet; see
http://www.mwsearch.com/
.

·
MedWeaver:
Prototype system that allows users to search differential diagnoses for any list of signs and symptoms, to search medical

literature, and to explore relevant Web sites; see

http://www.med.virginia.edu/~wmd4n/medweaver.html
.

·
Metaphrase:
Middleware component intended for use by both caregivers and medical records personnel. It converts the informal language

generally used by caregivers into terms from formal, controlled

vocabularies; see the following Web site:

http://www.lexical.com/Metaphrase.html
.

The Genome Project and Lupus Nephritis

With all the discussion in the press about the Human Genome Project, it is

only natural that physicians, researchers, and patients want to know about

how human genes relate to lupus nephritis. In the following section, we will