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Information Resources: The Internet as Community: Communication Avenues for Health Professionals and Health Consumers

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Barbara F. Schloman, PhD, AHIP

Citation: Schloman, B. (December 31, 2001). Information Resources: "The Internet as Community: Communication Avenues for Health Professionals and Health Consumers." Online Journal of Issues in Nursing. Available: www.nursingworld.org/MainMenuCategories/ANAMarketplace/ANAPeriodicals/OJIN/Columns/InformationResources/CommunicationAvenues.aspx

Communication on the Internet

The Internet offers, not only a powerful means to find information, but also the possibility of two-way communication. The most telling evidence of this, of course, is e-mail, the volume of which continues to grow dramatically. IDC, an industry analysis and forecasting firm, predicts that the 505 million e-mail mailboxes in use worldwide in 2000 will grow 138% to 1.2 billion in 2005 and that by 2005 the number of person-to-person e-mails sent on an average day will exceed 36 billion (IDC, 2001). Individuals with an interest in health issues--both health professionals and consumers-are using e-mail applications that bring them together with like-minded persons to share ideas and experiences. This column will highlight two types of communication forums: discussion lists and newsgroups. Although both professionals and consumers use each of these types, this column will consider the particular benefits of discussion lists for professionals and the use of newsgroups by consumers.

Discussion Lists: A Communication Tool for Professionals

A discussion list, also sometimes known as a mail list or e-mail conference provides the means for a subscriber to send a message to the list and have it automatically distributed to all subscribers. Similarly, anyone responding to the message via the list will have that message distributed to all participants. Many of these lists are devoted to the interests of a scholarly or professional group. They provide an effective means to discuss issues, ask questions, and network with colleagues. Lists are also used to disseminate information such as calls for papers, requests for proposals, conference announcements, and job openings. Even "lurkers," those who follow discussions but do not actively contribute, find that lists can be a valuable means to stay current in a field.

Discussion lists may have an open or a closed membership. Some lists are "moderated." That is, they have messages reviewed by a moderator before they are posted to the list. Others post messages automatically. Many lists maintain an archive of past postings, which may be searchable. This valuable feature allows you to determine if there has been a prior discussion of a given topic and to review the various messages. Many of these discussion groups, but not all, run on the LISTSERV software by L-Soft International.

A number of resources have highlighted the use of discussion lists in nursing. Thede (2001) presented a good overview of the use of the Internet by nurses, including its communication potential. McCartney (1999) discussed how online discussion lists benefit the nurse--namely, by providing the opportunity for networking worldwide, asking questions, generating ideas, and sharing information about resources. She highlighted the Perinatal Nursing Discussion List, begun in 1995, and how it satisfies the criteria of credibility. Participants are encouraged to identify themselves and their credentials, to identify opinion as such, and to cite any professional references completely.

How do I find a list that I might be interested in?

Several finding aids for identifying discussion lists exist. Three useful examples are:

NurseNet Listing of Nursing Discussion Forums
(www.ualberta.ca/~jrnorris/nursenet/nurlists.html)
NurseNet provides a listing of over 60 different discussion lists covering all areas of nursing.

NMAP Listing of Mailing Lists
(nmap.ac.uk)
NMAP, the United Kingdom gateway to information for nursing, midwifery, and allied health professions, provides a search feature that allows you to identify mailing lists on specific topics. Nearly 60 lists related to nursing are included.

Directory of Scholarly and Professional E-Conferences
(www.mailbase.ac.uk/kovacs)
Produced by Diane Kovacs and the Directory Team, the 14th edition of the Directory is currently available online. It provides a listing of discussion lists across all disciplines, including nursing.

How do I join a list?

It is important to remember that each list operates with two e-mail addresses. The one is the address used for managing the list. It is to this address that you send your message to subscribe, unsubscribe, etc. The other address is the one that you would use to send a message to the list for distribution.

The following are typical steps for subscribing to a list. Depending on the system being used to operate a list, these protocols may vary. The example shown is for NURSERES, a discussion list for nurse researchers.

Step 1: Address your e-mail request to the list management address:

listserv@listserv.kent.edu

Step 2: Compose your request to subscribe. Note that the subject line is to be left blank. In the message area of your e-mail message, type the following:

subscribe NURSERES yourfirstname yourlastname

Step 3: Send the message. Some lists will automatically respond by sending you a message to confirm your subscription request. Additionally you should receive a memo for new subscribers that outlines technical features of the list along with the guidelines for participation. Keep this new user memo to refer to later. Among the technical features that the memo may describe are how to set your subscription status to "digest," which will format all the day's postings into just one message for you to receive, and "nomail," which allows you to turn off receipt of messages temporarily without the need to unsubscribe.

How do I send a message to the list?

Again, typical steps are as follows:

Step 1: Address your e-mail message to the list address:

nurseres@listserv.kent.edu

Step 2: Type a meaningful description of your message in the subject line. This will allow members of the list who are not interested in your message to delete it.

Step 3: Compose your message, include your name and institutional affiliation, and send.

What is Netiquette?

Netiquette provides the guidelines for the proper way to communicate on the Internet. Arlene H. Rinaldi). The Net: User Guidelines and Netiquette (www.fau.edu/netiquette/net/) is one standard source. Basic rules include:

  1. Keep your messages relevant to the purpose of the list.
  2. Remember that all the subscribers will read any message you send. If the list is archived, your message will be viewable indefinitely.
  3. Maintain civility at all times, even with those with whom you do not agree. Messages in all capital letters are considered to represent shouting and are in bad form.
  4. Never forward unsolicited mass mailings or chain letters.
  5. Keep your messages brief and to the point.
  6. Do not send a message with an attachment. Many lists do not allow attachments, as they can be the mode of delivery of computer viruses.
  7. When replying to a message, check the address to determine to whom the reply will be sent. It can be very embarrassing if you inadvertently send a message to the entire list that you intended for an individual.
  8. When responding to another person, edit out what is not directly applicable to your reply. This will reduce the amount of non-pertinent information that other subscribers will need to read.

What are examples of discussion lists in nursing?

The following is a representative list of discussion lists available in nursing:

EM-NSG-L
Emergency Nursing List:
"Practice and issues of emergency nursing, care of emergency patients, and the discussion of shared concerns with other emergency professionals."
Subscribers as of 11/12/01: 857
List address (to post message): EM-NSG-L@itssrv1.ucsf.edu
List management address (to subscribe): listserv@itssrv1.ucsf.edu

GLOBALRN
"A world-wide internet e-mail discussion list on culture and health care issues."
Subscribers: over 700
List address (to post message): globalrn@itssrv1.ucsf.edu
List management address (to subscribe): listserv@listserv.ucsf.edu

NRSINGED
Nursing Educators Discussion

Subscribers as of 11/12/01: 706
List address (to post message): nrsinged@uvvm.uvic.ca
List management address (to subscribe): listserv@uvvm.uvic.ca

NURHIS-L
International Forum for the Discussion of Nursing History
Subscribers as of 11/12/01: 126
List address (to post message): nurhis-l@uconnvm.uconn.edu
List management address (to subscribe): listserv@uconnvm.uconn.edu

NURSENET
A Global Forum for Nursing Issues:
"NURSENET was launched on 26 September 1993. It is an open, unmoderated, global electronic conference for discourse about diverse nursing issues in the areas of nursing administration, nursing education, nursing practice, and nursing research."
Subscribers as of 11/12/01: 790
List address (to post message): nursenet@listserv.utoronto.ca
List management address (to subscribe): listserv@listserv.utoronto.ca

NURSERES
Discussion List for Nurse Researchers

Subscribers as of 11/12/01: 1,202
List address (to post message): nurseres@listserv.kent.edu
List management address (to subscribe): listserv@listserv.kent.edu

PNATALRN
Perinatal Nursing Discussion List:
"This list is to provide a forum for the discussion of perinatal nursing practice, education, and research….The range of topics might include technical, physiologic, psychosocial, or philosophical aspects of maternal-fetal health care."
Subscribers as of 11/12/01: 1,221
List address (to post message): pnatalrn@listserv.acsu.buffalo.edu
List management address (to subscribe): listserv@listserv.acsu.buffalo.edu

REHABNURSE-L
The Rehabilitation Nurses' List:
"Sponsored by the Association of Rehabilitation Nurses, this list provides a forum for discussing the latest topics in rehabilitation nursing."
Subscribers as of 11/12/01: 631
List address (to post message): rehabnurse-l@home.ease.lsoft.com
List management address (to subscribe): listserv@home.ease.lsoft.com

SCHLRN-L
School Nurse Network:
"A discussion group organized for school nurses, school nurse practitioners, school nurse teachers, and school nurse managers."
Subscribers as of 11/12/01: 1,825
List address (to post message): schlrn-l@listserv.acsu.buffalo.edu
List management address (to subscribe): listserv@listserv.acsu.buffalo.edu

SNURSE-L
International Nursing Student List:
"A list for all nursing students. It is an international list that focuses on communication between nursing student leaders world-wide, professional development, data locating and retrieval, nursing and nursing student issues, and National Student Nurses' Association events."
Subscribers as of 11/12/01: 193
List address (to post message): snurse-l@listserv.acsu.buffalo.edu
List management address (to subscribe): listserv@listserv.acsu.buffalo.edu

Online Newsgroups: A Communication Tool for Health Consumers

Background

One of the earliest uses of the Internet was posting messages to a bulletin board to be read by others with a common interest. These bulletin boards came to be called "newsgroups" and were collectively gathered together under the umbrella of Usenet in 1979. The number of newsgroups, on every conceivable topic, grew into the thousands. To read these messages, it was necessary to use software called a newsreader. In recent years, most Web browsers included a newsreader for reading and tracking messages. To improve access to the archives of newsgroups, Deja News was created in 1995 to provide a search interface to these messages. The most recent development was the acquisition by Google Inc., the Internet company known for its quality search engine, in February 2001 of the entire Deja News archive of over 500 million messages. Now Google provides the means to identify newsgroups, search the archives, follow discussions, and sign on to participate.

How do I find a newsgroup on a given topic?

It is possible to go to Google Groups (groups.google.com) and identify if there is an existing newsgroup on a given area of interest. This is how Google describes the organization of the newsgroups:

Usenet is like a river with thousands of tributaries. The main forks in the river lead to the top-level discussion categories (such as "alt"). Follow one of the river's forks and you'll come to smaller branches (such as alt.animals), which lead to tributaries containing messages divided into even more specific topies (such as alt.animals.dogs). Ultimately, your journey will take you to the smallest part of the data stream; the part containing messages from people who are interested in one particular topic (such as alt. animals.dogs.beagles). (groups.google.com/googlegroups/basics.html)

These are the top level hierarchies with their Google description:

alt. Any conceivable topic. news. Info about Usenet News
biz. Business products, services, reviews rec. Games, hobbies, sports
comp. Hardware, software, consumer info sci. Applied science, social science
humanities. Fine art, literature, philosophy soc. Social issues, culture
misc. Employment, health, and much more... talk. Current issues and debates

The name of each group begins with one of these designations and then follows with two more levels of increasing specificity, each separated by a period. Google lists all the newsgroups falling within a given category and indicates the volume of discussion that takes place there.

After you identify a newsgroup of interest, it is then possible to follow the thread of a discussion without signing on or identifying yourself. If a member of the newsgroup posts a response to a prior message, that response will be "threaded" to the message and to any other responses that preceded it. However, to participate in the discussion--either to reply to a message or to start a new thread-it will be necessary to register with your e-mail address and password. Because the messages will be available for public view and will be searchable over time, you will notice that many newsgroup members choose to sign up for an anonymous account with one of the free e-mail services and to post their message using that e-mail account. For more background on Usenet and using Google Groups, go to groups.google.com. The site also provides a Frequently Asked Questions (FAQ) section.

Where are the health-related newsgroups located?

For you as a health professional, there are two newsgroup hierarchies of particular interest: "sci.med…" and "alt.support...." Under "sci.med" you will find groups with more of a scientific or professional orientation. Included here is "sci.med.nursing," a newsgroup devoted to nursing issues. You may find this interesting to explore and to compare with discussion that takes place in one of the discussion groups mentioned earlier. "Alt.support" groups, however, are typically addressing the needs of the lay public. In the area of health, these take the form of support groups for sharing experiences and giving encouragement. The tone of the lists varies by the language and demeanor of the participants. The information that is shared may not valid. As of November 17, 2001, there were 170 groups listed. To give you an idea of the variety, here are the first twenty from the alphabetical list:

Online support groups: the good, the bad, the ugly

Peer support and empathy are often mentioned as key elements offered by online support groups. Preece (1999) highlights the importance of the empathy that is present in these forums, as well as the threats: "The benefits of receiving and giving empathy is good but the potential for trust being abused by people posing as medical experts is alarming" (p.66). She calls for the need to support balance between empathy and factual communication. Feenberg, Licht, Kane, Moran, and Smith (1996) also acknowledge the value of patient support groups in allowing patients to discuss their health problems frankly and the availability of advice. Their direct experience was with online support groups for patients with amyotrophic lateral sclerosis. They speak of the potential of these groups, but also their concern about accuracy of the advice and dealing with rumors. Gary and Remolino (2000) explore the use of online support groups for those dealing with loss and grief. They identify the benefits of "increased access, the ability to meet specialized needs, and universality." Limitations include anonymity breaches, hoaxes, and ethical and legal concerns.

Similarly, in a thorough review of the research on online support groups, Finfgeld (2000) found the same advantages and disadvantages surfaced. She not only concludes that more rigorously designed research is needed to evaluate the efficacy of online support groups, but also suggests nurses (mental health nurses in her specific example) need to discuss the pros and cons of participating in these groups with their patients. Culver, Gerr, and Frumkin (1997) did conduct a study to analyze the quality of the medical information of an online discussion group dedicated to sufferers of painful hand and arm conditions. Of the 1,658 messages reviewed over a five-month period, 44% provided medical information. The authors found that one-third of the information was unconventional and that nearly 90% of the medical messages were sent by individuals without professional medical training. They concluded that the medical information in online support groups might be inappropriate and based on limited evidence and personal experience.

The media have highlighted that Internet support groups can be victimized by fakers who lie about health conditions and elicit the support of the group (Grady, 1998). When found out, these pretenders are typically run out of the group. Smith, McLaughlin, and Osborne (1997) explored the nature of offensive conduct and its treatment by newsgroups. They found that the tone and frequency of reproaches varied by type of offense and by the nature of the group. The least amount of tolerance was shown to those who undermine the communal spirit of the group.

Conclusion

The U.S. Office of Disease Prevention and Health Promotion formed a Science Panel on Interactive Communication and Health to explore the nature of interactive health communication (IHC). In their consensus statement, the Panel identified six functions possible with this form of communication (Robinson, T.N., Patrick, K., Eng, T.R., & Gustafson, D., 1998, p.1265):

  1. Relay information
  2. Enable informed decision making
  3. Promote healthful behaviors
  4. Promote peer information exchange and emotional support
  5. Promote self-care
  6. Manage demand for health services

As the Panel concluded, the growing use of IHC raises serious questions about their quality, cost, and potential for doing harm. "Because IHC applications have the potential both to improve health and to cause harm, there is an opportunity and a professional responsibility for physicians and other health professionals to help ensure the quality, safety, and effectiveness of IHC applications" (Ibid, p.1264).

The professional discussion groups have flourished because they have enabled health professionals to seek information from peers, discuss common issues, and develop a meaningful online community. Similarly, the online support groups provide a virtual social setting for health consumers with common concerns to come together. These groups do not conform to any one model--some have health professional participants and some are allied with health organizations. Many have no professional input. Being aware of these support groups--both their up and downsides--prepares a health professional to discuss these with their clients and potentially steer them toward other resources and support groups when appropriate.

THE AUTHOR

Barbara F. Schloman, PhD, AHIP
Assistant Dean, Library Information Services
Libraries & Media Services
Kent State University
Kent, OH 44242
E-mail Address: schloman@kent.edu

Keywords: discussion lists, newsgroups, communication, Internet

REFERENCES

Culver, J. D., Gerr, F., & Frumkin, H. (1997). Medical information on the Internet: A study of an electronic bulletin board. Journal of General Internal Medicine, 12, 466-470.

Feeberg, A. L., Licht, J. M., Kane, K. P., Moran, K., & Smith, R. A. (1996). The online patient meeting. Journal of the Neurological Sciences, 139 (Suppl.), 129-131.

Finfgeld, D. L. (2000). Therapeutic groups online: The good, the bad, and the unknown. Issues in Mental Health Nursing, 21, 241-255.

Gary, J. M. & Remolino, L. (2000). Coping with loss and grief through on-line support groups. In J. W. Bloom & G. R. Walz (Eds.), Cybercounseling and cyberlearning: Strategies and resources for the millennium (pp.95-113). Alexandria, VA: American Counseling Association.

Grady, D. (1998, April 23). Faking pain and suffering in Internet support groups. The New York Times, p.G1.

IDC. (2001, September 17). e-mail mailboxes to increase to 1.2 billion worldwide by 2005. Retrieved November 18, 2001, from www.idc.com:8080/software/press/PR/SW091701Bpr.stm

McCartney, P. R. (1999). Internet communication and discussion lists for perinatal nurses. Journal of Perinatal and Neonatal Nursing, 12(4), 26-40.

Preece, J. (1999). Empathetic communities: Balancing emotional and factual communication. Interacting with Computers, 12, 63-77.

Robinson, T. N., Patrick, K., Eng, T. R., & Gustafson, D. (1998). An evidence-based approach to interactive health communication: A challenge to medicine in the information age [Electronic version]. JAMA, 280, 1264-1269.

Smith, C. B., McLaughlin, M. L., & Osborne, K. K. (1997). Conduct control on Usenet. Journal of Computer-Mediated Communication, 2(4). Retrieved November 18, 2001, from www.ascusc.org/jcmc/vol2/issue4/smith.html

Thede, L. Q. (2001). The Internet: A nursing resource. In V. K. Saba & K. A. McCormick (Eds.), Essentials of computers for nurses: Informatics for the new millennium (3rd ed., pp.123-137). New York: McGraw-Hill.

Disclaimer: Mention of a Web site does not imply endorsement by the author, OJIN, or NursingWorld.


© 2001 Online Journal of Issues in Nursing
Article published December 31, 2001 

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