Subject: DEMOCRATIC RESEARCH: MAKING A DIFFERENCE (Loka Alert 3-1) Loka Alert 3:1 (Feb. 18, 1996) Friends and Colleagues: This is one in an occasional series of electronic postings on democratic politics of science and technology, issued by the Loka Institute. You are welcome to re-post or publish it anywhere you feel is appropriate. (However, commercial republication requires prior permission.) To be added to, or removed from, the Loka list, please send an e-mail message to that effect to: loka@amherst.edu --Dick Sclove Executive Director, The Loka Institute, P.O. Box 355, Amherst, MA 01004-0355, USA Tel. 413 253-2828; Fax 413 253-4942; E-mail: loka@amherst.edu World Wide Web http://www.amherst.edu/~loka *********************************************************************** DEMOCRATIC RESEARCH: TOWARD A NATIONAL COMMUNITY RESEARCH NETWORK ----------------------------------------------------------------------- CONTENTS "Epidemiology By the People" in Woburn................ (1 page) Community-Based Research: Making a Difference......... (1/2 page) Establishing a National Community Research Network.... (1/2 page) Four Mini-Cases and Their Practical Results........... (2-1/2 pages) Next Steps............................................ (1/2 page) Contact Information & Sources......................... (1 page) Loka Update........................................... (1 page) ----------------------------------------------------------------------- "I'd take a bath and break out, like chicken pox. Take another and there's the pox again. I took a water sample to the health department; they said nothing's wrong with it. I thought they was good people, smarter than I was. But they wasn't." --Victim of toxic waste poisoning (quoted in Brown and Mikkelsen 1990, p. 145) Some readers of Loka Alerts may know the story of toxic waste in the town of Woburn, Massachusetts in the United States: Two decades ago children in Woburn were contracting leukemia at alarming rates. Other childhood disorders such as urinary tract and respiratory disease were also unusually common, as were mothers' miscarriages. The families of the leukemia victims were the first to discern a geographical pattern in the proliferation of disease. Anne Anderson, whose son Jimmy had leukemia, began gathering information about other sick children based on chance meetings with other victims' families and word of mouth. She theorized that the proliferation had something to do with the town water supply and asked state officials to test the water. She was rebuffed. The affected families responded by initiating their own epidemiological research. Eventually they were able to establish the existence of a cluster of leukemia cases and then relate it to industrial carcinogens leaked into the water supply. Their civil suit against the corporations responsible for the contamination resulted in an $8 million out-of-court settlement and provided major impetus for federal Superfund legislation that provides resources to cleanup the country's worst toxic waste sites. Two key factors led to this outcome: (1) victims and their families organized and worked together; and (2) they were able to enlist the help of several scientists at the Harvard School of Public Health and at John Snow, Inc. (JSI), a nonprofit organization, who conducted crucial research both with and on behalf of the affected families. The Woburn case is an example of what community-based research can accomplish. (Brown and Mikkelsen 1990) COMMUNITY-BASED RESEARCH: MAKING A DIFFERENCE Presently, most research in the United States is conducted on behalf of private enterprise, the military, the federal government, or in pursuit of the scientific community's intellectual interests. Minority or lower income groups (such as the residents of Woburn) have little influence over the direction of research. Consequently, research agendas often favor elite groups and--wittingly or not--help them maintain privileged positions. In contrast with this prevailing undemocratic model, "community- based research" is rooted in the community, serves a community's interests, and frequently encourages citizen participation at all levels. For instance, the Woburn case involved citizens collaborating with university experts as well as with an organization (JSI) that is dedicated to helping citizens conduct research. Community-based research aims not merely to advance understanding, but also to ensure that knowledge contributes to making a concrete and constructive difference in the world. Despite the effectiveness and democratic nature of community-based research, it has yet to be widely adopted in the United States. However, some other nations have well established systems for conducting such research. In particular, in the Netherlands a national network of 50 university-based "science shops" provides answers each year to about 2,500 research requests submitted by community and public-interest groups, unions, and local governments. (See Sclove 1995, available by e-mail request from Loka@amherst.edu or by visiting World Wide Web page: http://www.manymedia.com/loka/loka2.5.a.txt) THE LOKA INSTITUTE'S INITIATIVE TO ESTABLISH A NATIONAL COMMUNITY RESEARCH NETWORK The Loka Institute is a nonprofit organization concerned with making science and technology more attentive to social, political and environmental concerns, by encouraging the participation of citizens, grassroots, public-interest groups, and workers. As part of this effort, we have begun a project to establish a national community research network, based partly on the analogous Dutch "science shop" system. Our objectives are to: o Help existing community research efforts learn from one another; o Facilitate new research collaborations and the creation of new community-based research programs; o Help community groups identify programs that can provide research assistance; and o Enhance the institutional acceptance, public visibility, stature, and funding of community-based research. As an initial step, The Loka Institute has assembled a national board of advisors possessing a wide range of pertinent knowledge and experience, as well as representing racial, gender, and geographic balance. We have also established a community research discussion list on the Internet. (To subscribe, send e-mail to with a blank subject line and "subscribe scishops [your name]" as the message text). Many subscribers already perform community research in one guise or another, but were not previously aware of one another's work. Others wish to start new community research programs. Subscribers include leaders or staff members from public-interest organizations and community groups, university professors, students, workers, progressive business folk, government staff members, researchers from U.S. national laboratories, and others. About one-quarter are non-U.S. Loka has recently begun compiling a set of case studies of community-based research in the U.S. and elsewhere. These will eventually go into a directory and resource manual on community-based research, as part of our broader effort to create a national community research network. MINI-CASE STUDIES OF COMMUNITY-BASED RESEARCH AND ITS PRACTICAL RESULTS We provide below four mini-case studies of community-based research and its practical results. We are interested in assembling additional examples representing a variety of institutional settings--especially those that can be replicated at low cost and that serve groups whose interests have historically been slighted by traditional research agendas. We hope that these examples will inspire more dialogue on this topic and help us all tap into the underdeveloped potential of community-based research: (1) Jacksonville Community Council Inc., Jacksonville, Florida: Assessing the Fairness of Public Service Distribution THE ORGANIZATION The Jacksonville Community Council, Inc. (JCCI) is a broad-based civic organization that performs research intended to create positive changes in the quality of life in Northeast Florida. Study topics are selected by a committee of JCCI members--which includes all citizens who express an interest--after soliciting input from public officials, nonprofit organizations, human service agencies, labor leaders, minority community leaders, and the public at large. Members of JCCI and the community study the selected topics, reach consensus on key findings, and compile a list of recommended solutions. CASE STUDY A 1994 JCCI study examined public services in Jacksonville, Florida--including streets and drainage, parks and recreation, and police and fire services--to determine their geographic distribution. Based on its research, JCCI recommended more citizen involvement in decision making on the distribution of public services, improved monitoring of public service distribution, better adherence to standards concerned with achieving distributional fairness, and better communication between city functionaries and the public. These recommendations resulted in implementing an annual "Equity Index" that assesses how evenly public services are distributed in six districts comprising the Jacksonville area. Although this program is just getting off the ground, it has already prompted the Sheriff's Office to implement a new system for more equitable patrol services (JCCI 1994). 2) Policy Research Action Group, Chicago, Illinois: Determining Health Care Needs of Refugee Women THE ORGANIZATION The Policy Research Action Group (PRAG), a group of Chicago-based academics and community activists, has built a collaborative research network to connect research with grassroots activism. PRAG sponsors a Community Studies Internship program, which supports students who conduct research for community organizations. An Apprenticeship Program enables individuals from community-based organizations to develop their research skills by working on community research projects with mentors outside of their organization. PRAG also offers graduate student stipends at local universities for community-based policy research projects, and awards research grants to community-based organizations, independent researchers, and university researchers. In addition, PRAG sponsors workshops to present its research findings to community groups and policy makers. CASE STUDY For example, PRAG connected a student intern from Northeastern Illinois University with the community-based Mutual Aid Associations of Chicago Collaborative (MAACC). MAACC sought data on the health care needs of refugee women--including women from Cambodia, China, Ethiopia, Laos, and Vietnam--in the Uptown neighborhood of Chicago. In cooperation with MAACC, the intern conducted a literature review and designed a questionnaire about health needs that was given to 85 refugee women. The study found that the women had a low rate of involvement with the American health care system, were frustrated with the overcrowded conditions at the community health clinic, and were concerned with domestic violence. As a result of the research, the Mutual Aid Associations started a women's health program that is giving refugee women greater access to the health services they need (PRAG 1995). 3) The Northern Ireland Science Shop, West Belfast: Surveying Adolescent Alcohol Abuse THE ORGANIZATION The aim of the Northern Ireland Science Shop is to make the knowledge and skills of the two area universities accessible to community and voluntary groups throughout the province who do not have the means to pay for this information. CASE STUDY Two volunteer citizen groups formed based on their concern about alcohol abuse among young people in West Belfast. When these groups approached the pertinent government agencies, officials said they needed documented proof of underage drinking before they could become involved. The citizens went to the Northern Ireland Science Shop, which helped them design and implement a research project. The Shop suggested reading materials; identified a Queen's University professor and graduate student who assisted in drawing up a sampling frame and questionnaire; and involved a group of University of Ulster students, who needed to conduct research as part of their course work. Finally, the Shop helped process and disseminate the results. The study confirmed that there were indeed problematic levels of alcohol abuse among young people in West Belfast. As a result, adolescent alcohol abuse is now on the agenda of the statutory agencies in West and North Belfast, and the citizen groups have been invited to sit on a social services working group that is devising a strategy for tackling the problem (Martin 1991). 4) The Group de Recherche-action en Biologie du Travail, Montreal, Canada: Studying Occupational Hazards in Poultry Slaughterhouses. THE ORGANIZATION The University of Quebec-affiliated Group de Recherche-action en Biologie du Travail undertakes research projects for unions in an effort to improve the working conditions, health, and well-being of workers. A committee made up of union and university representatives receives project requests from the unions, and chooses which projects to pursue. Workers are encouraged to "participate actively in all stages of the research-- selection and identification of the problem, choice of hypotheses and methods, analysis and interpretation of data--contributing to their knowledge of the situation and assuring that the research corresponds to their needs." CASE STUDY In one case, researchers were contacted by poultry slaughterhouse workers who complained of many health problems--including backaches, articular pain, menstrual pain, and warts. After discovering that little research existed on occupational hazards in the poultry industry, the researchers initiated a new study. Workers participated in designing, distributing and collecting questionnaires; taking measurements of the workplace environment; analyzing and interpreting data; and reporting the results. Thanks to the study, the employer agreed to raise the slaughterhouse temperature, install benches to sit on while working, sharpen instruments, allow more toilet breaks, and provide workers with gloves that fit. The participatory research methodology had an additional benefit: in slaughterhouses where worker involvement in the research had been high, conditions improved more than in slaughterhouses that had participated less (Mergler 1987). NEXT STEPS Citizens and community members invariably understand many aspects of their own life-circumstances better than any outside observer or "objective" evidence can tell. Yet when something is wrong and in need of improvement, often people don't know where to seek help. Lower income and minority groups, who traditionally have little influence over the kinds of research that are conducted, often find that researchers are either unwilling or lack the means to help. Community-based research programs provide community members with resources to empower and help themselves. The preceding examples attest to citizens' ability to organize, learn, and act in positive and meaningful ways. Community-based research offers a tested and relatively economical means for addressing a wide variety of social, political, economic and environmental problems. It can also begin to counterbalance the undemocratic processes that currently determine most national research agendas. The Loka Institute will continue to collect examples of community- based research, working toward creating a national community research network in the United States. We are also quite open to the idea of helping to facilitate community research collaborations transnationally. WE WOULD VERY MUCH APPRECIATE YOUR FEEDBACK ON THESE STUDIES, DOCUMENTATION OF OTHER CASES, OR SUGGESTIONS OF ADDITIONAL COMMUNITY RESEARCH PROGRAMS OR NETWORKS THAT WE SHOULD BE AWARE OF. (We are aware now of dozens of other community research programs in the U.S.--and more elsewhere--but we are continually on the look out for more.) Your advice on the kinds of information that would help people initiate and evaluate community-based research activities is also most welcome. We can do this together! You can e-mail us at , or write to the Loka Institute, P.O. Box 355, Amherst, MA 01004, USA. *************************************************************************** This Loka Alert was prepared by Loka staffers Madeleine Scammell and Dug North, and edited by Dick Sclove. Special thanks to David Swain, Associate Director of JCCI; Loomis Mayfield, Research Coordinator at PRAG; and Karen Messing, Professor of Biology at the University of Quebec at Montreal (and to others who provided information on other cases that will appear in future Loka publications). Note: Dick Sclove is delighted that he will be a plenary speaker at the national meeting of the Dutch science shops in Groningen, May 9, 1996. We anticipate learning a great deal from the experience, and we'll keep list subscribers posted. *************************************************************************** CONTACT INFORMATION To contact the groups mentioned in the preceding cases: Groupe de Recherche-Action en Biologie du Travail, Departement des Sciences Biologiques, Universite du Quebec a Montreal, C.P. 8888 Succ. Centre-Ville, Montreal, Quebec H3C 3P8, Canada. Tel. +(514) 987-3334 E-mail: messing.karen@uqam.ca Jacksonville Community Council Inc.: JCCI, 2434 Atlantic Blvd., Suite 100, Jacksonville, FL 32207, USA. Phone: +(904)-396-3052 E-mail: dswain@osprey.unf.edu John Snow, Inc., 210 Lincoln St., Boston, MA 02111, USA. Tel. +(617) 482-9485. E-mail: rclapp@acs.bu.edu The Northern Ireland Science Shop, 111 Botanic Garden, Belfast, BT7 1JP, Ireland. Phone (353) (0232) 332620 E-mail: science.shop@v2.qub.ac.uk Policy Research Action Group (PRAG): Prof. Phil Nyden, PRAG Program Director, Dept. of Sociology & Anthropology, Loyola University, 6525 North Sheridan Road, Chicago, IL 60626, USA. E-mail: pnyden@luc.edu World Wide Web: http://www.luc.edu/depts/sociology/prag SOURCES Brown, Phil and Edwin J. Mikkelsen. 1990. _No Safe Place: Toxic Waste Leukemia, and Community Action_ (Berkeley: University of California Press). [JCCI]. Jacksonville Community Council, Inc. 1994. Annual Report 1993-1994. Martin, Eileen and Mike Tomlinson. 1991. _The Northern Ireland Science Shop: Report of a Seminar. 8 November. Mergler, Donna. 1987. "Worker Participation in Occupational Health Research: Theory and Practice," _International Journal of Health Services_, Vol. 17, No. 1, pp. 151-167. [PRAG]. Policy Research Action Group. 1995. PRAG Report of Projects, 1991-1995. Sclove, Richard E. 1995. "Putting Science to Work in Communities" _Chronicle of Higher Education_, Vol. 41, No. 29 (March 31), pp. B1-B3. *************************************************************************** LOKA INSTITUTE UPDATE: TO FIND OUT MORE about the Loka Institute or to help, visit our Web page (http://www.amherst.edu/~loka) or contact us via e-mail at loka@amherst.edu For information on obtaining Loka founder Richard Sclove's new book, _DEMOCRACY AND TECHNOLOGY_, contact your local bookseller or Guilford Press (Tel. 800-365-7006 or E-mail: info@guilford.com). Chapter 12 of the book sketches a strategy for embodying community-based research into a broader effort to evolve a democratic politics of technology. Traffic on the LOKA INSTITUTE E-MAIL LIST (Loka-L)--which distributes Loka Alerts as a one-way news-and-opinion distribution service--is intentionally kept low (an average of one message per month), to protect overbusy people from unwanted clutter. To be added to, or removed from, the list, please send an e-mail message to that effect to: loka@amherst.edu TO PARTICIPATE MORE ACTIVELY in promoting a democratic politics of science and technology, please join the Federation of Activists on Science & Technology Network (FASTnet). Just send an e-mail message to with a blank subject line. The text of your message should read: subscribe FASTnet You will receive an automated reply giving more details. FASTnet is now a moderated discussion list, which protects subscribers from receiving posts inappropriate to the list's purpose. FUNDRAISING UPDATE: The Loka Institute's 1995 year-end appeal has so far generated over $3,000 in contributions. We are also pleased to report a recent grant award of $15,000 from an anonymous foundation. Thanks to one and all! If you would like TO HELP KEEP LOKA'S WORK ALIVE, please write a check drawn in U.S. dollars to "Proteus/Loka" and mail it to the Loka Institute, P.O. Box 355, Amherst, MA 01004, USA. Contributions are tax-deductible on U.S. tax returns. For further information on contributing, contact us at Loka@amherst.edu or via the address and phone number at the top of this Alert.) INTERN OPPORTUNITIES: The Loka Institute may be able to take on an additional intern for the summer or fall of 1996. If you are interested in working with us to promote a democratic politics of science and technology, please send a hard copy resume along with a succinct letter explaining your interest to: The Loka Institute, P.O. Box 355, Amherst, MA 01004, USA. * * * There are currently more than 2,400 people and organizations worldwide on the Loka e-mail list (plus others reading via the Institute for Global Communications' electronic conference Loka.Alerts, via repostings to other electronic lists and Usenet groups, and via authorized republication in various newsletters and magazines). Meanwhile, LOKA'S EXECUTIVE STAFF has recently blossomed to 3 full-timers + 2 part-timers. We also continue to be blessed by the wise counsel of two national advisory boards, and by nourishing interactions with hundreds of friends and colleagues worldwide. Please accept our apologies if you receive more than one copy of this Alert owing to cross-postings to multiple lists. ####