HEALTHY COMMUNITIES

The health of a community is determined by the health of its citizens and by the well-being of the community as a whole. If the physical, mental, or emotional health of citizens is poor or is declining, the health of the entire community suffers. On the other hand, if the community itself is not healthy — if health care is inadequate or not affordable, if physical conditions are unsafe, polluted, or ugly, and if basic emotional support among citizens is lacking — the health of its citizens will be diminished. Community health and individual health cannot be separated.

Victor and Ruth Sidel, writing in Reforming Medicine (1984) state that "it is difficult to believe" that in the late 1950s "there existed a feeling that medicine in the United States could be effectively reformed bit by bit, piece by piece, to meet human needs." Now, approximately 10 years after that statement, the optimism has faded even further. The price of medical care has skyrocketed while the number of Americans with adequate and affordable health care has declined. Along with trends in other areas, the health gap between rich and poor has been expanding, and children, frequently, are the victims of this widening gap. People without economic means often must wait until a disease turns deadly in order to obtain professional assistance in an emergency ward. A 1990 report in the New England Journal of Medicine (McCord and Freeman, 1990) reveals that men in Bangladesh, one of the poorest countries in the world, have a better chance of reaching 65 than a man in Harlem. Forty percent of men in Harlem reach the age of 65 while nearly 80 percent of white men in the United States do. Also, pollution of various varieties finds its way into poorer communities, which lack the resources to change its destination, rally against the source, or defend itself from the pollution. With poor communities weakened in several ways, it becomes increasingly costly to treat problems, and health resources are often withdrawn, resulting in an implicit triage operation.

While children, the aged, the poor, and minorities in both urban concentration and rural isolation are the usual victims, increasingly the middle class is vulnerable to treatable diseases that may kill or merely bankrupt. Other troubling health statistics about middle-class people are emerging. For example, more than one out of every three children in the United States is overweight, highlighting the poor nutrition habits of children who increasingly feed on salty, sugary, and starchy junk food. Lack of exercise also contributes to this problem. The long hours spent watching television apparently can cause physical as well as mental weakening.

There is an implicit assumption that the rich can disassociate and distance themselves from the poor, both physically and emotionally, by moving to the suburbs, away from the turmoil and conflicts of the city. Television — and possibly computer-based entertainment of the future — also establish artificial environments divorced from the vexing realities of life. From the health perspective, running away from problems doesn't seem to work. From a strictly selfish viewpoint, ignoring the health issues of some segments of the population may be penny-wise and pound-foolish. Examples abound in this area, and include the renaissance of "extinct" diseases like smallpox or tuberculosis, the return of old diseases in deadly new forms, the diminished power of antibiotics through overprescription and overuse, and the possibilities of new epidemics rising from diseases spawned in poverty-stricken and polluted neighborhoods.

Money, as we have seen, plays an inordinate and unconscionable part in people's health and well-being. Although out of the scope of this book, it is worthwhile to call into question what role that the free market should actually play in the health process. Victor Fuchs (1983) raises these issues cogently.

American health care (and research money) is skewed towards expensive, high-tech, heroic-measure, hospital-oriented, highly specialized treatments rather than less expensive, prevention-oriented, primary care, and community-centered treatment. Changing this orientation would reduce the overall national health-care expenditures while significantly improving the health care of the disadvantaged. However, those in the broader community — at least in the United States — have shown through their antagonism to health-care legislation their apparent indifference to any shift in emphasis.

Health and Culture

According to Victor and Ruth Sidel (1983) "A particular kind of depersonalization concerns patients with a set of cultural beliefs that are not shared or understood by the health worker." This depersonalization may offend or make the patient uncomfortable, but may also lead "to failure in diagnosis and treatment as well."

The Sidels present a picture of some Puerto Rican patients that illustrates this issue. Many of these patients "classify illnesses, medicines, and foods according to an etiological and therapeutic system derived from the ancient Hippocratic humoral theory of disease." This theory states that a healthy person should have a "moderately wet, moderately warm body" and the four humors —dry, wet, cold, and hot must be in a state of balance. In this system, "cold" diseases are treated with "hot" medications, and so on. Thus some "pregnant women may be reluctant to take iron supplements or vitamins, which are considered hot, because they believe that hot foods and medications will cause the baby to be born with a rash." This lack of knowledge —or lack of respect —on the part of health practitioners regarding various non-Western cultures (including Asian cultures and native American cultures) breeds distrust between patient and the health practitioner. If the web of community is well-integrated, the culture of the community and the "culture" of the health care in the community will complement each other.

Health and Education

The relationship between health and education is close. When people are ill or undernourished, they lack the attentiveness and energy to perform well at school. While this relationship is obvious, Jonathan Kozol (1991) provides many unforgettable examples of this link, such as the situation in a Chicago elementary school he describes:

When situations like this are commonplace in a community, the health or well-being of the community itself is obviously threatened. Community-network developers need to help develop "snapshots" of education and other community concerns. New community advocates need to work with individuals and community groups to ensure that these snapshots improve rather than deteriorate as time goes on.

TECHNOLOGY'S ROLE IN HEALTH CARE

It is important to develop approaches that overcome the limitations imposed by the impersonal, expensive, incomprehensible, and inflexible system of medicine that exists today. It is also important to develop approaches that improve the quality of health care for individuals and their loved ones who may be faced with illness or injury today and to change the system for improved effectiveness and deeper compassion for individuals and their loved ones tomorrow.

Part of the Problem

While technology is not an answer by itself, it can be an element of the answer. The designers of CHESS (Comprehensive Health Enhancement Support System), a computer-based system, discussed below, have developed a list of six interrelated criteria for effective health information and communication, which can help in the evaluation of health-care-related computer systems. Each criterion is listed below, followed by a brief discussion of its implications.

Accessible

Health-care information and communication with others about health issues must be accessible to everybody. The most important barrier to accessibility is cost; to be truly accessible, costs should be very low. If technology of any sort is part of a system that provides information, it must be readily available and easy to use. This is one reason why telephones are often the cheapest route to health information.

Convenient

Although abundant medical information exists in medical libraries, this information is not readily available to nonprofessionals. The information is available in few locations — in big city medical schools, for example — and only then during certain hours. Telecommunications technology, obviously, could be used to overcome these constraints of time and distance.

Comprehensible

Once information is obtained, what good is it? What does it mean? How should it be interpreted? Information targeted at people who have been studying or practicing medicine for years will have little relevance to people outside this cognoscenti. Clearly this information must be significantly reorganized and restructured if it is to be truly useful to the average citizen. Although people aren't incapable of penetrating the polysyllabic haze of medical-speak, the average person — particularly one under stress due to a medical emergency and the necessity of making major life decisions quickly — won't undertake or will give up prematurely in the search for knowledge from the traditional medical literature. Viewed from this perspective, a substantial amount of work and financial resources would be necessary for the transformation and general democratization of health-care information.

Timely

Needless to say, information, especially health-care information, is extremely time-critical. People need information when they need it, not when a doctor is available to tell them. They may come up with questions at 2:00 a.m. Ad-ditionally, people often have many questions, and they may not feel comfortable or calm enough to ask them all when talking to a health-care professional.

Nonthreatening

Although health-care workers generally strive to be unintimidating, their knowledge, prestige, or matter-of-fact demeanor can seem threatening, uncaring, or could act to cloud peoples' ability to think clearly and come to their own conclusions. Similarly, the physical surroundings of the clinic or hospital may be alien to the patient and may prevent independent and well-reasoned decisions.

Anonymous

Health-care discussions offer many situations where anonymity is appropriate. People are often embarrassed by their problems, which they don't want shared with the world. People are also embarrassed by their ignorance: They don't want to admit to not knowing about something that, presumably, everybody else knows about. Moreover, diseases involving sexuality or social stigmas are difficult to address in a public way. Finally, there are important concerns over privacy of data, insurability, and other insurance-related concerns. Computer systems can be designed in ways that preserve anonymity where appropriate, as well as preserve privacy of confidential information generally.

Controlled by the User

According to the developers of CHESS, "people understand more and make better decisions, when the information and support environment allows them to control how they receive and assimilate information" (Gustavson et al., 1992). In contrast many aspects of today's health-care systems make it difficult for a patient to have any control of the process. When that happens, people become demoralized and, consequently have reduced confidence and ability to take care of themselves and their family.

Improving Community Health

Ultimately what effects might we anticipate if we develop community-network services based on the criteria listed above? Several computer-based services are beginning to offer integrated, wide-ranging, health-related services to nonprofessionals. While the lessons are still being learned, the questions rephrased, and the projects revised, there are some useful insights that we can gain from current efforts.

The developers of the CHESS system suggest three major outcomes that network health-based systems should help bring about: (1) improved health status, (2) improved health behavior, and (3) cost-effective service utilization. These are useful goals for any system that strives to support health care in the community. Let's turn our attention to the CHESS and ComputerLink systems to see how these goals were addressed in two computer-based systems.

CHESS

The Comprehensive Health Enhancement Support System (CHESS), (Gustavson, 1992; Gustavson, 1993) developed at the University of Wisconsin in Madison and Indiana University in Bloomington, is a good example of an integrated computer-based health information system. CHESS program goals include increasingly involving persons in relevant health-care decisions, discussion, and knowledge. In the words of CHESSıs developers, overcoming traditional barriers such as "limited accessibility, complex material that is difficult to understand, need for confidentiality, and limited financial resources" are the major goals. The developers assert that: "A computer-based support system can overcome or reduce many of these barriers, providing information and support that is convenient, comprehensible, timely, non-threatening, anonymous, and controlled by the user." Additionally, CHESS addresses communication and information needs through an integrated set of services that allow users to "anonymously talk with peers, question experts, learn where to get help and how to effectively use it, read stories of people who have endured similar crises, read relevant articles, examine their risks, think through difficult decisions, and plan how to regain control over their lives" (Gustavson et al., 1992). Furthermore, the researchers have evidence that shows (in the case of CHESS-HIV) reduced medical costs based on fewer or shorter hospitalizations that more than pay the costs of providing the system.

The chief researchers have developed content in six areas: (1) breast cancer, (2) AIDS/HIV infection, (3) sexual assault, (4) substance abuse, (5) stress, and (6) academic crisis. The researchers developed the information in each area after extensive assessment (including surveys, focus groups, and interviews) of the needs of people in each content area. The information was then organized into electronic form by an interdisciplinary team.

The CHESS system itself ran in the patients' homes on personal computers that were connected via modems to a central host computer. CHESS was conceived of as a "shell" or modular system that connected different types of services under one roof. There are currently nine generic services, including Questions and Answers, Instant Library, Getting Help/Support, Personal Stories, Expert Mail, Discussion Group, Decision Aid, Action Plan, and Assessments, that can be used for a wide range of health-care information and support needs. The Expert Mail and Discussion Group services support anonymous communication, so that the confidentiality of the user is guaranteed. The Action Plan component is geared toward helping those affected by a health crisis come to a decision and determine a realistic way for them to carry it out.

Users of CHESS rated its usefulness very high, and most indicated that they had very positive reactions to it. With the users of the AIDS/HIV services, several encouraging results were found, including decreased negative emotions, decreased interference of AIDS in their daily lives, and increased perceived control over their health care. An HIV-positive patient left the following message in the on-line Discussion Group that eloquently describes those feelings:

I'm proud to say I've gotten as far as I have in the past couple of months because of this CHESS program. I feel as if I've grown by giant leaps and bounds, as if a whole new person has come out from inside me, it was always there but never came out, something like a spring flower. Thanks for all your great support and advice.

The underlying complexity of some modules raises some important issues. The Decision Aid module, for example, uses multiattribute utility models, and the Assessments module uses a Bayesian model of probabilities. Robert Hawkins, one of the project researchers, reports that these modules are not difficult to use, and that patients with low levels of education actually used them more than those who had completed higher levels of education. Complex software, nevertheless, carries greater inherent risks than simple software. Complex software, for example, is more likely to have undetected bugs that produce inaccurate results under certain conditions. Complex software is also less likely to show a direct relationship from user inputs to software output, which could be confusing to a user that wanted a cause and effect explanation.

ComputerLink

Another computer-based medical information system, ComputerLink (Brennan, 1992), was developed in conjunction with the Cleveland Free-Net, one of the earliest community networks. The system is intended to promote collaboration between Alzheimer's disease caregivers and health-care professionals and between caregivers themselves who use the system to exchange information, advice, and emotional support. To this end, ComputerLink provides three services: information, communication, and decision support.

Information in ComputerLink is provided via an Electronic Encyclopedia containing over 200 pages of relevant information that has been organized around four major topics. These topics can be browsed screen-by-screen, selected via key words, or found through a computer search of specific words or phrases. The communication component provides private e-mail among participants; an unrestricted bulletin board called The Forum, in which all users can read the others' messages and post their own comments or questions; and a Q&A area, in which the nurse moderator answers questions submitted anonymously on the system for others to see.

Early evidence from the ComputerLink project suggests that the indirectness and anonymity provided by computer-based systems, may make computer-based systems more popular than telephone-based services offering similar capabilities. Although privacy of records is an important concern that networked computer systems tend to make more problematical, the issues that arise in the health context are of special concern. While the Code of Fair Information Practices discussed in Chapter 8 provides general guidelines for privacy, computer-based systems like the ones above raise vexing questions about what is being done with the information, especially when the information is sensitive. Is it stored for future use or distributed to other sites? If the data are used in scientific analysis, how is the information about specific — yet anonymous — individuals maintained without being linked to specific identities? Answering these questions is particularly important when the effectiveness and usefulness of the system depen

These new computer-based health services also raise the specter of health care with no human contact, just as the computer-networks phenomenon raises the specter of "communities" of people that never encounter each other face to face and education without teachers. While computer-based aids and — especially — computer-mediated conversations can be of great value, they must be regarded as intriguing possibilities that may play some role in human-centered community health care in the new community. Reinvigorating the human side of community health is more important than merely injecting technology into it.

HEALTH IS A COMMUNITY CONCERN

Howard Rheingold, in his highly original book on The Virtual Community (1993) relates several stories about how the health problems of an individual acted as catalysts that helped draw people together into communities of shared concerns, interests, and goals using computer networks. In one example, a frequent contributor to the WELL's parenting conference informed the other participants that his seven-year-old son had been diagnosed with leukemia. Rheingold reports that many people sent supportive messages and several others — including two doctors — also started contributing to the discussion. Other people began to provide firsthand information based on their experiences as patients with blood disorders. The participants became increasingly knowledgeable in a multitude of health issues from the physiological to the political to the practical.Since health is a central issue to every individual as well as to the entire community, bonding and organizing around health and well-being is a natural outgrowth of these discussions. The shared experience recounted by Rheingold —including the happy news that the boyıs leukemia yielded to chemotherapy —illustrates the power of health concerns in a community.

Ray Oldenberg, author of the Great Good Place, also develops persuasive arguments for a strong connection between community and health. He argues that Americans' love affair with self-help programs, prescription-drug treatments, and other individualistic approaches to mental, physical, and emotional health show how the retreat from community has eroded collective health. The deterioration of community health from stress-related symptoms is also suggested by statistics of America's prescription-drug consumption. Oldenberg (1991) quotes researcher Claudia Wallis to make this point, "It is a sorry sign of the times that the three best-selling drugs in the country are an ulcer medication (Tagamet), a hypertension drug (Inderal), and a tranquilizer (Valium)." According to Oldenberg, belonging to a community generally diminishes the need for drugs and therapy.

By focusing on the individual, society has built an environment that degrades the community. "Our cities frequently make us sick," as Oldenberg points out (1991). As a society we've let public places become ugly, hostile, dirty, and dangerous, while commercial establishments and malls with sculpture, fountains, and private security forces become increasingly elaborate and expensive. Mike Davis, in his book City of Quartz (1992) and in other articles, has written persuasively on this topic as it applies to Los Angeles. He describes the virtual Balkanization of Los Angeles into sectors of luxury malls, walled neighborhoods, and "free fire zones." In Los Angeles' Skid Row, home to thousands of homeless people, Davis reports, there are no public toilets. The last one was bulldozed down several years ago by the Community Redevelopment Agency.

While Davis describes conscious efforts to segregate people by income and race, contrary to all hopes for a "civil society," James Howard Kunstler writing in The Geography of Nowhere (1993), has chronicled the steady, largely unconscious, erosion of public space accompanied by the individualistic suburbanization that has occurred throughout the United States, segregating people into enclaves according to economic class. The rich shop in luxurious stores and travel to Europe and Asia, while the poor languish in dangerous and depressing squalor, and those in the middle class spend their nonworking hours in sterile strip malls and television torpor.

HELPING COMMUNITIES WITHIN COMMUNITIES

Health is more than physical health; it includes mental, emotional, and psychological well-being and connections to the community. In particular, community-computer networks can help support the ad hoc development of human networks that undergird community health.

The New York Youth Network

The New York Youth Network is a computer-based network that first came on-line in 1987 and is devoted to serving the needs of disadvantaged urban youth (Fig. 5.1). Rather than focus on information or educational resources, this network focuses primarily on critical areas in the psychological development of young people. These areas (which are often neglected and misunderstood) include communication skills and self-esteem. In addition, NYYN's users increase their familiarity and comfort with computers, as a useful side-effect of using the computer to communicate. Their reading and writing skills are improved through communicating with each other, commenting on issues, and sharing their experiences. The founders of the NYYN feel that users' confidence in themselves and in their ability to communicate is bolstered through using the network.

NYYN is a text-based system with an extremely simple and intuitive user interface. It's currently running on an old 286 computer and accessed through eight dial-in ports. The system is accessible at no cost through a number of community-based organizations (CBO) in New York, including Playing to Win sites (discussed in Chapter 3) and the Door, a large multiservice center for youths that includes an alternative high school. At any given time, 8-25 CBOs have access to NYYN and between 250 and 800 youths have accounts on the system. The CBO generally picks up the costs for telephone usage. NYYN executive director Ellen Meier and NYYN co-founder Orlanda Brugnola believe that there is virtually no limit to the number of youths who'd like to use it: Finances are the only limiting factor.

The stench of confusion lingers in the air,

Causing misunderstanding and argument — beware.

I think no one understands themselves,

And therefore, they can't anyone else.

I have seen the problems from misplacement.

I have felt the wars brewed from argument.

There is no love if there's none for ourselves,

There's no peace in a world so disheveled.

Jessica Ortiz

Over the years, members have helped each other with personal problems and have communicated to the whole membership in times of distress — to everyone's benefit. For example, when one young woman mentioned that she lost her boyfriend in an accident resulting from a foolish stunt, she was answered by another young woman who had lost her boyfriend, who had been killed in an argument over a car. The messages of both of these grieving young women were in a public discussion group, and both had words of concern and caution for all the readers on NYYN. The opportunity for such interactions is part of what makes NYYN unique in these young people's lives.

Providing an "arena for rehearsing" is one of the most important needs met by the network. Because peers often have a greater impact than adults in young peoples' decision-making (see, for instance, Rice and Atkin, 1989), NYYN has written scenarios for young people to "role-play" on-line. Role-playing in this way provides an environment in which individual young people can "practice," in private, responses to classic teen issues. NYYN believes that when young people rehearse their behavior, they may find it easier to make responsible decisions in actual situations. Several scenarios for dating have been written for network use.

Meier believes that networks offer three intrinsic attractions to the population that NYYN serves. "Young people really love to use computers and these young people rarely have access either at home or school. A second motivation is the opportunity to communicate with others in the relative anonymity of an on-line environment. Bypassing the traditional cues of race, ethnicity, even gender, NYYN members can move beyond stereotypical interactions. Finally, by creating an environment based on their interests, the network becomes a 'place' that is theirs. This sense of security helps even those with literacy problems persevere within our communications environment."[3]

People helping people, providing mutual assistance, has always been a cornerstone of the American tradition. Alcoholics Anonymous groups, for example, currently meet in thousands of locations across the United States to help provide understanding, support, and conviviality for recovering alcoholics who are struggling to remain sober.

While not a substitute for face-to-face contact, electronic discussion groups centered around mutual-help topics offer an increasingly popular and convenient way for large numbers of people to communicate with each other. These discussion groups allow people who are in remote locations, who work long or awkward hours, or who find travel difficult, to participate in conversations on topics of concern. Also, people suffering from uncommon conditions or ailments will generally have fewer people close at hand who are in similar situations with whom to discuss common concerns.

Ed Madara of the American Self-Help Clearinghouse recounts the important implications of the development of these electronic mutual help groups in the passage quoted at length below:

Networking has often been the first activity leading to the early identification of new or growing health/social problems, the organization of actual mutual aid self-help groups, and the development of more formal health and social service organization. The seeds of many long-standing health foundations, societies, and agencies dealing with various health and social problems have generally first taken the form of mutual-aid self-help groups or networks. These community support services were often created by individuals and/or families as they networked with one another and became aware of both their common needs and their abilities to help one another through group support and action. These small informal networks are often the first to provide support, information, skills sharing, education of professionals, and needed advocacy.

Madara goes on to say that, "The increased use of such computer networks could therefore help promote the more rapid and increased development of new self-help organizations that provide needed support, education, and advocacy for new or developing health issues or problems" and that more people will be participating in mutual-aid efforts and self-help communities as the technology becomes more widely available.

The opportunities afforded by computers have not gone unnoticed or underutilized. Ed Del Grosso who operates the Black Bag BBS in Wilmington, Delaware has an on-line listing of over 300 BBSs on health-oriented topics including addictions, disabilities, and health issues. Some of these BBSs include: Health Source BBS in Florida; Health Wisdom BBS in Nevada; HEX, Handicapped Users Exchange in Maryland; the Recovery BBS in Virginia, which has a special focus on adult children of alcoholics; the Friends of Bill W. BBS in California; Doc in the Box in Missouri, the Neuropsychology-Bound BBS in Ohio for head injury and stroke; several AIDS information BBSs; an OASIS BBS for overeaters, and many others for chronic fatigue syndrome.

Similar services are offered via Fidonet, an international network of message store-and-forward home computers, which hosts a variety of "echoes" or "conferences" on health-related concerns, according to Madara (1993). These Fidonet "echoes" include: Holistic Health, Grand Rounds Medical, AIDS, Alcoholism and Drug Abuse, Child Abuse, Diabetes, Disabled Interests, Nurses Network, Public Psychiatry, Overeaters, Social Services, Spinal Injury, Stroke/CVA, Visually Impaired, Deaf Users, Stress Management, and more. Forums also exist on SeniorNet, Compuserve, Prodigy, America Online, Delphi, and other networks. The Tallahassee Free-Net contains disabilities information, while the Denver Free-Net provides the Colorado Health Care Building and The Heartland Free-Net provides a Medical Center. Usenet, the large Internet-based "news" network has literally hundreds of newsgroups including sci.med.aids, sci.med.nursing, sci.med.telemedicine, sci.med.occupational, sci.med.nutrition, sci.med.diseases.cancer, alt.support.mult-sclerosis, alt.food.fat-free, alt.infertility, talk.politics.medicine, sci.psychology, and misc.kids.pregnancy. The Institute for Global Communications (IGC) system offers a wide variety of on-line periodicals and discussion groups including those devoted to global and third world health issues, news regarding childrensı health, bulletins from Physicians for Social Responsibility and discussions of repetitive strain injury and health-care reform. Many new Web sites are also cropping up. The NPTN site, for example, has pointers to The Clinic, which, in turn, contains pointers to other health-related sites, including sites of the United Nationıs World Health Organization (WHO) and the U.S. National Library of Medicine.

One block off Market Street in the heart of San Francisco's Castro Valley, one of the most AIDS-devastated communities in the world, 73-year-old advocate for People with AIDS (PWA) Ben Gardiner has been operating the AIDS Info BBS system (Fig. 5.3 and 5.4) since 1985.[4] When he started the system, the only available information on AIDS was found "on telephone poles" and in the growing number of public meetings and articles in the gay press. It was within this information-scarce environment that Gardener launched the system. Much of "the information was simply not available anywhere else." Using BBS software developed by Mark Pearson in the year preceding his death from AIDS, the AIDS Info BBS soon attracted callers from all over the United States.

Figure 5.3 AIDS Info BBS — First Screen and Top-Level Menu

Figure 5.4 AIDS Info BBS — News, Articles, Book Reviews Menu

There were two main objectives for AIDS Info BBS: providing information —including newspaper and magazine articles and essays— and providing an Open Forum for discussions on all issues regarding AIDS. Although Gardiner excised a small number of postings that were inappropriate, all of the approximately 7,500 postings are still available on-line, forming an important historic community archive. Gardiner characterized the postings as varying from very rational to highly emotional: "Peopleıs anger was important." In his view, the first 5000 postings are "more interesting," reflecting community interest, concern, and outrage with the AIDS epidemic, than the subsequent 2500 or so postings. This change is probably a result of an increase in the amount of information available on AIDS, but it also could be because the BBS "was being swallowed by the Internet." The system used to get 25­40 calls a day, but is now down to between 3­10 a day. At the same time, the gopher site at San Francisco State University that contains the entire Open Forum archive, "Ben Gardinerıs AIDS Database" has been receiving 400­2000 reads per day, demonstrating some interesting patterns of electronic use within communities of interest.

Many of the 8000 registered users on the AIDS Info BBS are now dead. Gardiner keeps no record of those, but assumes that a person that has used the system actively and stops for a year or two is probably dead. Nor does he reuse login names — every name on the system is unique and along with the archive itself is part of a living memorial, like the Alameda County War Memorial in Chapter 2. As a 73-year-old, Gardiner has survived a devastating epidemic from which most of his friends have died. Running the BBS is a "healthy response to the problems in his community" in Gardiner's view.

The system contains a wide variety of essays and articles of interest to PWA and a calendar of upcoming events. Circumstances have forced the AIDS community into a crash course in a number of areas that are nearly incomprehensible to the average person. These include esoteric descriptions of how various drugs work, the life-cycle of diseases, and the minutiae of insurance, of government processes, and of bureaucracy. Most important, the educational process is collaborative — people ask questions and others will answer them as best as they can. There is little cause for competition or flaming — as there is a shared sense of struggle against a life-threatening enemy.

Health information including "cures" and therapies have historically been popular topics with new (unregulated and nonmonopolized) media. The fascinating book on Border Radio (Fowler and Crawford, 1990) describes in detail the wide range of medical misinformation that beamed across the American border from various powerful radio station outposts in rural Mexico. With products ranging from "Crazy Water Crystals" to goat-gland transplants, the electronic pitchmen used the airwaves to sell pills, salves, and cures for a profit, sometimes becoming rich and/or politically powerful in the process.

While Gardiner abhors censorship and considers it generally more odious than the information being censored, it is obvious that conditions are ripe for misinformation. The major problematic aspect, of course, is the literal life-and-death importance of such information. In addition there is a growing impatience with medical, insurance, and government approaches to the situation, and there is the seeming indifference of the "straight" community to come to terms with the epidemic.

Although conditions exist for electronic quackery, the AIDS Info BBS community is apparently taking a philosophical approach to the situation. Every posting that I saw that described a therapy (or "cure") was accompanied by a disclaimer that explicitly or implicitly acknowledged the very real possibility that it might not work as advertised or even that it might be a fraudulent solicitation. Although it is still possible that a reader of the information may be duped into false hopes, the free exchange of this information is the recommended course. Other forums, sci.med.aids on Usenet, for example, ask posters of "unusual or unorthodox" information to back it up by providing reference information. In any case, deliberate fraud, whether conducted in person, over the phone, or on a community network system is illegal and the perpetrators (not the community network organization) should be prosecuted.

MADNESS is a communication and information service for "people who experience mood swings, fright, voices, and visions." It is an electronic distribution list — or listserv — that allows anybody with an e-mail account to easily send messages to and receive messages from the entire group. In the words of Sylvia Caras, "The list is used to further low-cost exchange of information to serve cohesion and mutuality, and support increased power for 'people who' [experience mood swings, fright, voices, and visions]."

According to Caras, who started the listserv, "There is an intention to involve users of mental health services in their services and to have users directing their own care." This intention is much in keeping with other "rights movements" such as the civil rights and women's movements in that people are requesting equal consideration under the law as well as the right — as citizens in a democratic state — to participate with respect and dignity in the decisions that influence their lives.

Participants in this listserv are often participants in the C/S/X movement, for consumers, survivors, and ex-patients. The discussion on the list ranges from the immediately pragmatic to broad philosophic and political visions. Although the listserv discussion is unmoderated and uncoordinated, there is a strong coherent foundation of shared experience, values, and respect.

There are questions on the list about specific drugs: One participant wanted to know, for example, whether Ritalin is ever prescribed for children. A list of all medications was posted along with the ironic comment, "Certainly takes a lot to keep us in line.<g>"[5] One participant asked why medical patients have telephones and psychiatric patients usually don't. Besides asking questions and raising issues, many people offer their own "war stories" of actual situations. One participant had investigated the use of "seclusion orders" at a state hospital and found that their use was specifically forbidden by the Joint Hospital Accreditation Manual for Psychiatric Hospitals. This participant pointed out that knowing the rules and regulations that govern hospitals can be very useful to a patient in protecting him or herself.

Although it has not been universally so, mental patients have historically been incarcerated, shackled, drugged, operated upon, and shocked. Even with today's greater emphasis on rights, self-help, and respect, "almost all current activity and advocacy ... is supported by local and national mental health systems and associations, and by grants," according to Caras. Caras and others believe that this approach is too indirect and "dulls the philosophic edge of the grass-roots user movement" and has high administrative costs. In addition, electronic distribution is more immediate and far less costly: "There is no postage, no envelopes, no address labels, no folding" (or copying)! Some participants have introduced the idea of coordinating efforts to address common concerns. One participant suggested a demonstration project in which policies and procedures would be rewritten to replace the concept of involuntary treatment.

Although Caras is enthusiastic about this media, she realizes there may be some resistance to the technology. Some of the audience that she is trying to reach feel that radio and television may send "targeted messages" or speak directly to them. Caras feels that the nature of computers is interactive and "at the control of the operator" and hence "the medium may be acceptable."

Judi Chamberlin, an active participant on MADNESS, and an associate at the National Empowerment Center in Lawrence, Massachusetts, posted an eloquent case for psychiatric survivors that appear in her speech "The Right to be Wrong" (1994).

For all the people confined in psychiatric institutions against their will, for all the people confined in group homes and congregate living facilities, for all the people confined by the internal walls of forced drugging, for all the people confined by the lost memories and broken brains of electroshock, I say: We will not wait! Our struggle is being fought today, on many fronts, by many brave people, who want nothing more than the chance to live our potentials, to take chances, to succeed, to fail, to try, to have opportunities, to make mistakes, to achieve, to change our minds, to be foolish, to pursue our dreams.

Increasingly, people are making the case that environmental degradation contributes to community degradation and is a key motivating factor for social and political activism and organization (Mann, 1991; Highlander, 1993). Environmentalism needs to be concerned with inhabited areas and the built environment as well as with the largely uninhabited and natural environment. Toxins and other pollution in the community contribute to disease and shortened life spans, and less obvious factors such as noise pollution and an ugly, repressive, and unsafe manmade environment take their toll as well. A liquor store specializing in cheap, fortified wine or an unsafe park, seen in this light, becomes an "environmental hazard" for an entire community.

Lower-income groups use fewer resources and consequently cause less environmental damage than people with higher incomes; at the same time they are forced to bear a larger share of the consequences because of their relative inability to resist. In many cases environmental injustice is strongly related to economic injustice.

In the South Bronx community in New York City, the archetypal benighted urban neighborhood in New York City, one finds grim proof of the tight interconnection between economics, health, community, and the media. In one of the most devastated areas of the country, where debris, broken glass, abandoned cars, and buildings dominate the landscape for literally hundreds of blocks, there is one beguiling artifact that beckons from thousands of locations: billboards. As Michael Kamber has written "On nearly every corner, on the sides of abandoned buildings, and in empty lots the shiny, slick billboards are plastered. The bus stops and subway entrances and building tops, everywhere you look, there's an ad staring back at you" (1990).

In a neighborhood of oppressive poverty and massive unemployment, what products would warrant such exposure? Sadly, the answers are alcoholic beverages and cigarettes, which, according to the Centers for Disease Control are the first and second most-advertised products in the black community and Latino community, where 90 percent of all alcohol and cigarette billboard advertising is located. In these communities the ratio of alcohol and cigarette ads to food ads is approximately 80 to 1. And while fresh food may be nearly impossible to obtain, liquor stores are ubiquitous. In South Central Los Angeles, the site of the massive 1992 civil unrest, liquor stores are over 10 times more prevalent than in the rest of the city (Nakano, 1994).

Dr. Charles Schade of the American Public Health Association sheds some grisly light on the consequences of legal drug use on low-income communities (summarized in Fig. 5.5) based on (pre-AIDS) mortality statistics from the Harlem district of New York City, clearly showing the lethal link between alcohol and cigarettes and mortality in poor communities. While cigarettes are responsible for 350,000 deaths per year, deaths from illegal drugs are roughly 1/70 of that. Ironically, the "war on drugs" costs $9 billion a year, dwarfing by a factor of over 200 the money spent on tobacco education.[6]

In 1969, seven years before the bicentennial of the United States, Graham and Gurr (1969) wrote an 822-page comprehensive and authoritative study, the History of Violence in America. That study provides details of some of America's more unseemly proclivities, including lynchings, vigilantism, race riots, labor violence, political assassinations, police oppression, as well as criminal violence. The drive-by shootings, teenage suicides, and domestic violence that have erupted since the book's publication could undoubtedly provide material for another chapter or two.

Violence is expensive and everybody helps pay the bill. In the United States, costs due to violence run to approximately $34 billion per year in direct medical costs (Mercy et al., 1993) and the medical costs of a single bullet wound are estimated at $30,000. Richard Blow, reporting on violence as a community health issue stated that, "In 1986 and in 1987 the most recent years for which statistics are available, 66,182 Americans died from gunshot wounds, more than died in nearly nine years of fighting in Vietnam.'' It is becoming increasingly common to view violence as a breach in public health (Mercy et al., 1993), a "disease" that afflicts communities, sometimes in epidemic proportions. The U.S. Centers for Disease Control in Atlanta is funding 15 experimental antiviolence projects across the country.

There are also costs to communities that go far beyond direct medical costs. The costs of security guards and sophisticated security systems are the fastest growing sectors in the U.S. economy, and the U.S. taxpayer must also bear the brunt of the staggering costs of incarcerating 1.3 million people (United States, 1994). Like other threats to our community lifeblood, violence —particularly the fear and isolation that comes from the perception and expectation of violence— results in indirect health care costs. These include therapist or psychiatrist fees, and the costs stemming from the use of prescription drugs, drugs for hypertension, anxiety, and other nervous disorders. The threat of violence also takes its toll in profound ways that canıt be calculated in terms of dollar expenditures. Feelings of insecurity, unease, and apprehension act to diminish the imagination, willingness to cooperate, and ultimate effectiveness of community endeavors. Thus violence erodes the health of a community by dampening its possibilities and its spirit, resulting in lost opportunities of incalculable proportions. All these costs —economic and psychic— are due at least in part to inattention and neglect of community health.

Although the flames of violence are often fanned by outside forces — cheap and plentiful hand guns, non-stop violence on television, and an economy that offers a very bleak future for many — the solution to the problem of community violence can't be dictated solely from the outside, any more than solutions to other community problems can. Violence is a community problem and must be addressed at the community level by community members who may or may not be working with outside institutions of the church, government or business.

In recent years, public safety concerns have begun to be addressed in more community-oriented and participatory ways. One of the most visible of these trends is the community-policing movement, where police take a more holistic approach to public safety by stationing officers in specific communities for relatively long assignments. This approach is used instead of assigning police to large territories (to traverse almost exclusively by car) or bumping them randomly from neighborhood to neighborhood while simultaneously liberating them from the burden of "harvesting numbers" (number of arrests, for example). Rather, police are granted the authority and flexibility to work with community members and organizations, to address community concerns in ways that are well-suited to the community. Inherent in this idea is the realization that public safety is a community job that canıt be delegated in its entirety to a professional group. Community policing has its risks, such as favoritism and inconsistency, as well as promises. The biggest challenges come from the police bureaucracy itself (a paramilitary, hierarchically arranged organization) and from the community, who must be willing to put in the long hours that true participation requires while reconceptualizing the idea of police, and urging them to reconceptualize their own idea.

While a community network can't solve a problem like community violence, it can help facilitate the transfer of information that can be put to good use in the community. This might include information services that help support community policing, such as meeting notices, documents, and on-line submission of citizen complaints. The PEN system, for example, discussed in Chapter 4, provides several good examples of this material. Although PEN has public safety information on earthquake preparedness, emergency 911 information, and information from the fire department, we will only look at the police department's collection of electronic services shown in Fig. 5.6.

Figure 5.6 Police Department Services on PEN

PEN services include how to avoid problems, including "Protect yourself from con games" (Fig. 5.7) and "Apartment Security Tips", what to do if problems occur, including "Accident Tips" and "Phone Nuisances", how to work with the police ("Phone Directory," "How to Report an Accident," "How to pay parking tickets," and even how to "Submit a petty theft report" electronically), community information ("Crime Statistics"), and how to get additional "handout" materials (including "The ABCs of Self Protection," "30 Ways to Prevent Crime" (in Spanish), and "Senior Citizens Against Crime").

The Police Department also promotes community approaches to public safety. One way is by advocating on-line public discussion ("Join the CITY Conference") of community concerns. Another way is by offering tips on how to start and sustain a neighborhood watch. Although crime prevention is probably higher than community building on the police department's list of priorities, their suggestions of neighborhood block parties, housewarmings, picnics, and progressive dinners as part of the neighborhood watch program to prevent crime help to build community as well, which may ultimately be the best preventive medicine.

While we are discussing systems that provide information for empowering individuals and communities, three others deserve attention. The first, the Crisis Resource Directory on the Seattle Community Network, was developed by the Peace Heathens organization to provide survival information for street youths. The guide, originally produced as a printed booklet, contains information on social services as well as on emergency food, shelter, and medical resources. Advice is given on how to respond in dangerous situations that may arise when living on the street, such as being menaced by skinheads or other racist groups.

The thoughtful and innovative Center for Neighborhood Technology in Chicago has developed a Neighborhood Early Warning System (NEWS) that combines statistics from a number of municipal and county government sources to help illuminate warning signs of possible community decay by using seven problem indicators. These indicators (including building code violations, property tax delinquencies, fire records and others) are obtained from a variety of incompatible databases and combined as part of "an affirmative neighborhood-information strategy" to "more effectively counteract housing abandonment, commercial decline, and financial disinvestment in Chicago's inner city neighborhoods" (CNT, 1995). The NEWS system is available to people at various public access terminals and also provides electronic conferencing facilities and e-mail for people to discuss neighborhood issues. The Center has also made some NEWS information available on their Web site (see Appendix B).

RTK Net, originally suggested by Patricia Bauman and currently administered by OMB Watch, a Washington-based public interest group, was made possible through a 1986 law that requires the U.S. Environmental Protection Agency to make data publicly available by computer telecommunications and other means. RTK Net, (named for the people's "right to know") provides information on quantities of emissions of toxic chemicals by manufacturer in a community or zip-code area. RTK Net has already proved valuable in several community struggles. A construction union in West Virginia, for example, discovered information that was useful in helping to block legislation that would have allowed increased dumping of carcinogens into the state's rivers. The system has also been used by activists in Utah to help them limit toxic waste dumping in that state (Leslie, 1995).

These three examples illustrate the importance of information to communities. With thought, education, advocacy, and activism, community-network approaches such as these can be effective weapons in the battle for community health and well-being.

Although community health and well-being is deteriorating in many ways, there are also some hopeful signs. One is that there is a renewed interest in community health in contrast to individual health. The other is that a more holistic view of health is emerging, one with an increasing emphasis on health care rather than medical care, in which public safety, nutrition, housing concerns, environmental, economic vitality, and psychological well-being are all central issues.

The entire community needs to participate if community health is to be improved. Individuals and their families need to be aware of health issues and do what they can to ensure a healthy life for themselves. Groups in the community organized around health concerns and issues — be they Alcoholics Anonymous, groups of walking seniors, or bicycling enthusiasts — need to raise consciousness and to lend mutual support. Health-care professionals also have a role to play. They can provide the community with useful, timely, and comprehensible information. This information can help people and their community make informed decisions in times of relative well-being as well as in times of individual or community crisis or natural disaster.

The dialogue among the community participants and health care professionals should be used to develop a community consciousness on its relative well-being and to develop a community agenda for health that can be used proactively in the formulation of public policy. Community networks can help engender this dialogue.