Pain Resources on the Internet
Information about the Internet
Selected Features of the Internet
Introduction and History
The Internet was created in 1969 to provide government scientists with a tool to send and receive information between collaborating sites, although it gradually expanded from being a government entity only. What we now know as the World Wide Web was created by European physicists who needed to send information to each other. They developed the hypertext markup language (HTML), which can be used to send and receive documents, sound, and live pictures—provided one has the software to perform these tasks. As a result of the High-Performance Computing Act of 1991, Internet access was made available to the public through telecommunications companies, information services, and other public access systems.
The information that was initially available to the public on the Internet was relatively limited, but today the Internet has more than 182 million sites on the World Wide Web alone, and from 2006 to 2007, the size of the Internet doubled (Netcraft, 2008). Furthermore, mailing lists, gopher sites, and other areas are accessible to the general public. One may liken Internet access to a gigantic, continuously expanding library. In addition, features such as chat rooms, newsgroups, and mailing lists bring together people from across the world to share and discuss experiences, information, and knowledge. More and more, the use of the Internet has become embedded in our daily lives and includes banking, bill paying, shopping, electronic learning (e-learning), electronic mail (e-mail), and posting personal blogs (opinions, comments). The degree to which information technology is used is growing every day. The volume of information—including medical information—continues to grow. Consequently the Internet attracts both health care professionals and patients.
Information about the Internet
As the internet has become more popular, the amount of information found there has grown proportionally. Most well-stocked bookstores or computer stores carry a variety of books written for all levels of usage on the subject of the Internet. Numerous magazines about the Internet are also available, and most computer magazines have columns, sections, or features devoted to the Internet and related topics. Of course, information about the Internet is available on the Internet itself.
Access to the Internet
Several ways are available to access the Internet. An increasing number of organizations have internal e-mail with a so-called “gateway” for sending and receiving e-mail via the Internet. Most higher-education facilities have Internet access and World Wide Web access. Most public libraries provide computers for their patrons to access the World Wide Web. Finally, one can subscribe to commercial online services or direct Internet service providers (ISPs), which can be accessed from a personal computer.
For those who want to access the Internet from home, many of the commercial online services and ISPs currently offer a flat fee or free access for those who subscribe to their service. These services and their features are reviewed regularly in computer or home/office magazines.
Selected Features of the Internet
The features that are most useful for both patients and health care professionals are primarily, but not limited to, e-mail, mailing lists, newsgroups, and the World Wide Web.
Electronic Mail (E-Mail)
Electronic mail (e-mail) is an effective way to communicate and exchange information and serves as an alternative to the use of the telephone and fax. Because e-mail can be composed, sent, and read at any time for both sender and receiver, it is very convenient and cost-effective. Furthermore, e-mail can be saved in an electronic form, such as on a writable CD (CD-RW) or a jump (flash) drive, similar to the way hard copy documents are filed in a filing cabinet.
If necessary, one can also transmit an e-mail with one or more documents attached to the message. This can be highly advantageous when two or more people are collaborating on a project, such as writing a scientific paper. The attached document can be formatted in many ways. Word-processing documents, software, slide presentation files, and photos can be transmitted this way. However, one should ensure that the receiver has the correct software to open or translate the attached document.
Mailing Lists
A mailing list contains the names and e-mail addresses of a group of individuals with similar interests for the purpose of sharing information over the Internet. The concept of a mailing list can be described as follows:
• A subscriber posts a question, comment, or some other information.
• The posting is then distributed to all subscribers.
The members can act as a group by responding to the posting as though it was a regular personal e-mail message. The lists of available topics are almost unlimited. The resource list at the end of this appendix includes a few selected mailing lists related to pain management and a Web site where the reader can search for mailing lists geared toward a specific topic.
When subscribing to a mailing list, one must often follow a subscription policy. The subscription process varies a little from one mailing list to another, but when a mailing list is mentioned, details on the subscription procedure are generally included. Nicoll and Oulette (1997) provided some general rules on how to subscribe to mailing lists that still apply today. Subscriptions to mailing lists are free of surcharges; however, some health care mailing lists require that the subscriber be a health care professional.
Mailing lists transmit information to their subscribers as individual messages or in digest form. The digest form is distributed as one e-mail document containing all the messages sent to the mailing list over a given time period, such as 24 hours. The digest form might be preferable to the individual messages because some mailing lists may send 100 or more messages per day, which can be inconvenient and more time-consuming to read. Most mailing lists also provide the subscriber with access to archived messages.
Newsgroups
Thousands of newsgroups exist on the Internet, and as the Internet has grown, so has the number of these groups. One can compare newsgroups with any public (electronic) bulletin board. Newsgroups are located on a part of the Internet known as the Usenet. Unlike mailing lists, one does not subscribe to a newsgroup. Instead access is made through software provided by an ISP or through the use of commercial software. Newsgroups provide a unique opportunity for individuals to meet and communicate with each other. However, most newsgroups are not moderated, so the quality of information found there may not be as high as that of mailing lists.
Usenet groups related to medical topics are very active and provide a network and means of support for individuals with a particular illness, such as cancer. On some commercial information services, one can access forums that function similarly to the newsgroups. However, participation is limited to members of that particular service only.
As a health care professional, one must be careful when responding to messages related to medical or nursing advice in newsgroups because it could be considered practicing nursing or medicine across state lines. Should someone decide to take legal action based on advice given via the Internet, some insurance carriers might not provide coverage in the event of malpractice. Although a disclaimer at the end of a message does not free one from liability, it could be helpful.
File Transfer Protocol
File transfer protocol (FTP) is a method of transferring electronic files to a personal computer from a remote computer. A wide variety of services are available through FTP, and one can obtain everything from the text of Supreme Court opinions to computer freeware and shareware.
Gopher
The gopher is an alternative type of web browser that enables the Internet user to browse for resources. The gopher is really an electronic version of the library card catalog. However, once the gopher service locates the needed information, it can retrieve the file on the host computer.
World Wide Web
Many people think that the World Wide Web (also known as the Web and abbreviated as “www”) and the Internet are the same entity. However, the Web is only one part of the entire Internet. Information on this part of the Internet is written in hypertext markup language (HTML) and uses a hypertext transfer protocol (http), a special protocol that allows the user not only to read text, but also to view pictures and movies and hear sound. This information can be transmitted using either regular or cellular telephone lines or fiberoptic lines. In addition, http and HTML enable the user to connect to other areas in the same document, other documents on the same computer, other Web sites, or other file transfer protocol (FTP) servers. For example, the user can access the Web site of the American Pain Society (http://www.ampainsoc.org) (Figure A-1) and link (move) directly to the International Association for the Study of Pain (IASP), the American Society for Pain Management Nursing (ASPMN), or other professional organization Web sites, and from those sites can branch out to other sites.
Figure A-1 American Pain Society Web site home page. As appears in Pasero, C., & McCaffery, M. (2011). Pain assessment and pharmacologic management, p. 821, St. Louis, Mosby. From American Pain Society, 2010. May be duplicated for use in clinical practice.
The type of software that enables the user to access sites on the Internet is called a Web browser. These browsers provide a graphical interface between the personal computer and the Internet so that the personal computer can “read” files on the Web.
The places where one can access information on the Web are called Web sites, which consist of one or more Web pages. The first page of a Web site, frequently referred to as the home page, often contains an index from which one can access other pages on the Web site via hyperlinks (see Figure A-1). Web addresses, also known as uniform resource locators (URLs), are used to simplify returning to a site. Because these addresses can be long and complicated, most Web browsers allow users to “bookmark” pages of interest.
Weblogs and Wikis
A weblog is defined as a “hierarchy of text, images, media objects and data, arranged chronologically, that can be viewed in an HTML browser” (Winer, 2003). It is often described simply as an online journal in which the content is presented unedited (non-peer reviewed) in the “voice” of one person. A wiki is best described as a weblog-like system that can be edited (such as Wikipedia). As such, a wiki generally consists of the edited (non–peer reviewed) voice of many persons. It is important for the user to understand the nature of weblogs and wikis to prevent misinterpretation of their information. For example, individuals seeking information regarding health care treatment may conduct online searches that yield results from both weblogs and wikis, and thus may contain personal opinion rather than evidence-based information. In addition, products are often advertised on weblogs and wikis and may detail “clinical outcomes” and personal testimonials that are not based in research. Health care professionals can reduce misunderstanding by educating patients and families about both the benefits and dangers of obtaining information from the World Wide Web.
Looking for Health Information on the Internet
The United States Department of Health and Human Services (U.S. DHHS, 2000) defines health literacy as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.” Given the vast amount of health information available online, looking for information on the Internet can be a daunting task, comparable to searching the card catalog at the library. However, because the Internet is an electronic database, one can search very large amounts of data in a very short time. For example, the keyword “pain” yields an impressive 239,000,000 sites. When the search is narrowed down to “acute pain,” the number of sites decreases to 12,900,000.
Clearly the search should be narrowed to very specific terms, and more than one search may be necessary. Using the “help” function of the search engine to maximize its efficiency is strongly recommended. Some of the search engines’ Web sites are listed in the selected list of Web sites at the end of this appendix.
Once the desired Web site has been located, one may wish to return to the site in the future without repeating the search. This can be done with the bookmark, or “favorite places,” function on the Web browser. If more than one user is using the same browser, each person should have a different subset of bookmarks. A variety of Internet resources are listed at the end of this appendix.
Quality of Health Information on the Internet
In an early editorial in the Journal of the American Medical Association, Silberg, Lundberg, and Mussachio (1997) wrote, “Health care professionals and patients alike should view with equal parts delight and concern the exponential growth of the internet . . . The problem is not too little information but too much, vast chunks of it incomplete and not only in the medical arena.” (p. 1244). The authors go so far as to call it “the world’s largest vanity press,” offering the warning “Caveat lector et viewor—let the reader and viewer beware.”
If the Web is used as an information resource, the user must beware of its pitfalls. Much good information can be found on the Web, but the information should be scrutinized at least as carefully as one would do with other sources, such as journals and books. As mentioned, health care professionals need to let patients and families know that information from the Web may not be supported with sound scientific data, and some of the information may be false or deceptive. Additionally, it has been noted that health information found online is often incomplete and has poor readability, requiring at least a high school level of reading ability to understand content in both English and Spanish versions (Berland, Elliott, Morales, et al., 2001).
The Web presently remains a free-for-all, where anyone can post any information about any subject without the protection of the well-established standards applied to books and peer-reviewed journals. The industry continues to take a strong stand in developing ways to police this medium without legislation. Several initiatives involving government, industry, and professional organizations are being undertaken to improve the quality of medical information available on the Web. The National Library of Medicine and National Institutes of Health (2009), the United States Food and Drug Administration (U.S. FDA, 2005), and the American Association of Retired Persons (AARP, 2009) have all published online guides that may be used to evaluate health information Web sites. Assisting patients to become “Internet literate” as they seek out quality information available to them on the Internet is a crucial role of the health care professional. Some guidelines are listed in Box A-1. Additionally, health care professionals must be aware that a lack of access to Internet-sourced health information may represent an additional barrier to care for their patients and that issues of health literacy apply to this area of patient education as well (U.S. DHHS, 2009). Efforts to assist patients to identify available means to independently seek out quality health information encourage self-advocacy.
One resource to which health care professionals can confidently direct patients is “The Health On the Net Foundation (HON)” (http://www.hon.ch/), a nongovernmental organization whose mission is “to guide the growing community of healthcare consumers and providers on the World Wide Web to sound, reliable medical information and expertise” (HON, 2009). In this way, HON seeks to contribute to better and more accessible and cost-effective health care. Information on the organization’s Web site is divided into content of interest to patients/individuals, medical professionals, and Web site publishers. Over 5000 links to quality health information, representing 72 countries, can be found at the HON site.
Mailing lists, Web sites, and e-mail addresses of interest to pain management clinicians and their patients are listed in Table A-1. The listing of a commercial Web site should not be considered an endorsement of the company or its products. The list was checked at the time of submission and found to be accurate, but addresses are subject to change by the provider of the service without prior notice.
Table A-1
Selected List of Web Sites with Specific Application to the Pain Management Clinician
| Sources for Pain-Related Information | Location |
| Agency for Health Care Policy and Research | http://www.ahrq.gov |
| Alliance of State Pain Initiatives | http://www.aspi.wisc.edu |
| Amedeo Medical Literature Service | http://www.amedeo.com/ |
| Am J Nurs/Lippincott Nursing Center | http://www.nursingcenter.com |
| American Academy of Hospice and Palliative Care | http://www.aahpm.org |
| American Academy of Pain Management | http://www.aapainmanage.org |
| American Academy of Pain Medicine | http://www.painmed.org |
| American Academy of Neurology | http://www.aan.com |
| American Academy of Orofacial Pain | http://www.aaop.org |
| American Association of Neuroscience Nurses | http://www.aann.org |
| American Association for the Treatment of Opioid Dependence | http://www.aatod.org |
| American Cancer Society | http://www.cancer.org |
| American Chronic Pain Association | http://www.theacpa.org |
| American College of Apothecaries | http://www.acainfo.org |
| American College of Physician Homecare Guide for Advanced Cancer | http://www.acponline.org/patients_families/end_of_life_issues/cancer/ |
| American Council for Headache Education | http://www.achenet.org |
| American Headache Society | http://www.americanheadachesociety.org |
| American Holistic Nurses Association | http://www.ahna.org |
| American Hospice Foundation | http://www.americanhospice.org |
| American Medical Association | http://www.ama-cmeonline.com |
| American Society of Interventional Pain Physicians | http://www.asipp.org |
| American Nurses Association | http://www.nursingworld.org |
| American Pain Foundation | http://www.painfoundation.org |
| American Pain Society | http://www.ampainsoc.org |
| American Pain Society & American Society for Pain Management Nursing List Serve Subscription | http://www.aspmn.org/Organization/listserv.htm |
| American Society of Anesthesiologists | http://www.asahq.org |
| American Society for Action on Pain | http://www.druglibrary.net/schaffer/asap/index.htm |
| American Society of Addiction Medicine | http://www.asipp.org |
| American Society of Pain Educators | http://www.paineducators.org |
| American Society for Pain Management Nursing | http://www.aspmn.org |
| American Society of PeriAnesthesia Nurses | http://www.aspan.org/ |
| American Society of Regional Anesthesia & Pain Medicine | http://www.asra.com |
| Apparelyzed: Spinal Cord Injury Peer Support | http://www.apparelyzed.com/index.html |
| Arthritis Foundation | http://www.arthritis.org |
| Cancer Care | http://www.cancercare.org |
| Cancer-Pain.org | http://www.cancer-pain.org |
| Centers for Disease Control | http://www.cdc.gov |
| Center for Palliative Care Education | http://depts.washington.edu/pallcare/ |
| Center to Advance Palliative Care | http://www.capc.org |
| Chronic Fatigue Immune Deficiency Syndrome Association of America | http://www.cfids.org/ |
| Chronic Pain Association of Canada | http://www.chronicpaincanada.com |
| Chronic Pain Network™ | http://www.chronicpainnetwork.com |
| City of Hope Pain and Palliative Care Resource Center | http://prc.coh.org/ |
| CMEPain.com | http://www.cmepain.com |
| Complementary/Integrative Medicine (CIM) Education Resources | http://www.mdanderson.org/education-and-research/resources-for-professionals/clinical-tools-and-resources/cimer/ |
| Emerging Solutions in Pain (ESP) | http://www.emergingsolutionsinpain.com |
| End of Life Nursing Education Consortium (ELNEC) Project through the American Association of Colleges of Nursing | http://www.aacn.nche.edu/ELNEC |
| Evidence-Based Medicine/Reference Sources | http://pain-topics.org/related_websites/#reference |
| Fibromyalgia Information Foundation | http://www.myalgia.com |
| Fibromyalgia Network | http://www.fmnetnews.com |
| Food and Drug Administration | http://www.FDA.gov |
| Gerontological Society of America | http://www.geron.org |
| Health On the Net Foundation | http://www.hon.ch/ |
| Help for Headaches | http://www.headache-help.org |
| Hospice Foundation of America | http://www.hospicefoundation.org |
| Hospice & Palliative Nurses Association | http://www.hpna.org |
| International Association for the Study of Pain | http://www.iasp-pain.org |
| International Organizations (web links) | http://pain-topics.org/related_websites/#international |
| Last Acts (Robert Wood Johnson Foundation) | http://www.rwjf.org/pr/product.jsp?id=20938 |
| The Mayday Pain Project | http://www.painandhealth.org |
| MD Anderson Cancer Center Pain Management Center | http://www.mdanderson.org/topics/paincontrol |
| MEDLINE | http://www.ncbi.nlm.nih.gov/pubmed/ |
| Medscape | http://www.medscape.com |
| Memorial Sloan-Kettering Pain Control Program | http://www.mskcc.org/mskcc/html/474.cfm |
| Migraine Resource Network | http://www.migraineresourcenetwork.com |
| Morbidity and Mortality Weekly Report (MMWR) | http://www.cdc.gov/mmwr/ |
| National Center for Complementary and Alternative Medicine | http://www.nccam.nih.gov |
| National Clearinghouse for Alcohol and Drug Information | http://ncadi.samhsa.gov/ |
| National Council on Alcoholism and Drug Dependence | http://www.ncadd.org |
| National Foundation for the Treatment of Pain | http://www.paincare.org |
| National Fibromyalgia Association | http://www.fmaware.org |
| National Fibromyalgia Partnership | http://www.fmpartnership.org |
| National Fibromyalgia Research Association | http://www.nfra.net |
| National Headache Foundation | http://www.headaches.org |
| National Hospice Organization | http://www.nho.org |
| National Institute of Arthritis and Musculoskeletal and Skin Diseases | http://www.niams.nih.gov/ |
| National Institutes of Health Pain Consortium | http://painconsortium.nih.gov/ |
| National Institute for Nursing Research | http://www.nih.gov/ninr |
| National Library of Medicine | http://www.nlm.nih.gov/ |
| National Organization for Rare Diseases (NORDO) | http://www.rarediseases.org |
| National Pain Education Council | http://www.npecweb.org |
| National Pain Foundation | http://www.nationalpainfoundation.org |
| National Palliative Care Research Center | http://www.npcrc.org |
| National Rehabilitation Information Center | http://www.naric.com/ |
| National Shingles Foundation | http://www.vzvfoundation.org |
| National Vulvodynia Association | http://www.nva.org |
| The Neuropathy Association | http://www.neuropathy.org |
| Neurosciences on the Net | http://www.neuroguide.com/ |
| Newsletter for Chronic Fatigue Syndrome | http://www.cfs-news.org/cfs-news.htm |
| North American Spine Society | http://www.spine.org |
| OncoLink | http://cancer.med.upenn.edu/ |
| Oncology Nursing Society | http://www.ons.org |
| OncoPain Mailing List | A listserv for people coping with cancer pain. To subscribe, send an e-mail to listserve@med.ucalgary.ca; leave the subject line blank, and in the body of the message type: “subscribe oncopain <your first and last names>” |
| The Oxford Pain Internet Site | http://www.medicine.ox.ac.uk/bandolier/booth/painpag/index2.html |
| Pain and Policies Study Group | http://www.painpolicy.wisc.edu |
| Pain.com | http://www.pain.com |
| Pain Connection | http://www.pain-connection.org |
| PainEDU | http://www.painedu.org |
| Pain L Mailing List | A listserv for people coping with chronic pain. To subscribe, send an e-mail to listserv@wvnvm.wvnet.edu; leave the subject line blank, and in the body of the message type: “subscribe pain-l <your first and last names>” |
| PainKnowledge.org (National Initiative on Pain Control) | http://www.painknowledge.org |
| Pain and the Law | http://www.painandthelaw.org |
| Pain Management Online | http://www.painmngt.com |
| Pain Relief Network (PRN) | http://www.painreliefnetwork.org |
| Pain Treatment Topics | http://pain-topics.org |
| Power Over Pain Action Network | http://www.painfoundation.org/poweroverpain/default.asp?file=network.htm |
| Professional Journals, Magazines & Newsletters on Pain | http://pain-topics.org/related_websites/#professional |
| PROSPECT (Procedure Specific Postoperative Pain Management) | http://www.postoppain.org/ |
| PubMed (NLM Literature search engine) | http://www.ncbi.nlm.nih.gov/PubMed |
| Reflex Sympathetic Dystrophy Association of America | http://www.rsds.org |
| Sickle Cell Information Center | http://www.scinfo.org/ |
| Sigma Theta Tau | http://www.nursingsociety.org |
| SpineUniverse | http://www.spineuniverse.com |
| Spondylitis Association of America | http://www.spondylitis.org |
| TMJ Association, Ltd. | http://www.tmj.org |
| Trigeminal Neuralgia Association | http://www.endthepain.org |
| Virtual Anaesthesia Textbook | http://www.virtual-anaesthesia-textbook.com |
| The Vulvar Pain Foundation | http://www.vulvarpainfoundation.org |
| WebMD Pain Management Health Center | http://www.webmd.com/diseases_and_conditions/pain.htm |
| World Wide Web search engine | http://www.google.com |
| World Wide Web search engine | http://www.altavista.com |
| World Wide Web search engine | http://www.lycos.com |
| World Wide Web search engine | http://www.yahoo.com |
As appears in Pasero, C., & McCaffery, M. (2011). Pain assessment and pharmacologic management, pp. 823-826, St. Louis, Mosby. May be duplicated for use in clinical practice.
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