Phil Brown
Professor of Sociology and
Environmental Studies
Brown University
Tulane University
Center for Public Service and
Center for Engaged Learning &
Teaching
November 7, 2011

•

forms of community engagement
Community Engaged Activity
Like CBPR, the needs of communities are central.
Service and education, rather than research -- topics are identified by and useful to community partners. Most projects supported by Brown University’s Swearer Center for
Public Service are like this.
Community-Based Participatory Research (CBPR)
Collaborative, equitable involvement of all partners in all phases of the research, from design to dissemination. Much of my work is like this, but I also do much of the first type.
Furthermore, CEA and CBPR can interact…

For example, our Environmental Justice seminar sends many students into the field, working with community groups with whom we have prior involvement.
Some of their work involves research as well as service:
• 50-state survey of state guidelines on school siting on contaminated land – published as EPA document and in another form by Center for Health, Environment, and
Justice
Some of their service work gets published in major journals:
• One class project worked with a community toxics groups
(Environmental Awareness Committee of Tiverton) to pass state law establishing ECHO (Environmentally Compromised
Home Ownership Loan Program). Article on this published in Environmental Science & Technology

For me, the two are part of a whole
Working with students on CES prepares them for CBPR in terms of their sensibilities, ethics, and experience
Students may go back and forth between the two, just as I do
However…I will focus on CBPR, since the research end provides grants and publications, which is a focus for us today

How to build departmental interest: discussions of public sociology in Sociology Department following 2004 talk by ASA President Michael Burawoy on
“public sociology”
2004-2005
Forum on “Public Sociology Meets Community-Based
Participatory Research”
6 workshops over the rest of the year, featuring presentations by graduate students and faculty from
Sociology and other departments
One of my doctoral students suggested this, in part because of what our research group does and in part because she was a member of ASA Task Force on Public Sociology

Principles of Community-Based Participatory Research
CBPR
• Address issues affecting community partners
• Build community capacity
• Report findings using accessible language
• Knowledge and power are linked
• Creation of new knowledge should be liberating
• Be respectful about community needs when reporting data
• Adhere to ethics of mutual respect, open communication, and recognition of knowledge, expertise, and resource capacities of all partners
• All participants are co-learners
• Co-ownership of data
• Credit and recognition for project shared equally
-
Schulz, Israel, Selig, and Bayer, 1997 ; Schultz, Parker, Becker, 1998; Southeast Community Research Center

• Increases quality and validity of research
• Builds community capacity
• Improves relevance and utility of data for all partners
• Pools diversity of skills, knowledge, and expertise applied to a research question or problem.
• Provides additional money and employment opportunities for community partners
-Israel, Schulz, Parker, and Becker, 1998

• “Best-Practice” Guidelines—National Institute of Environmental
Health Sciences
• Federal RFAs
• CDC—Urban Health Centers
• National Institute of Environmental Health Sciences
• NIH-wide programs
• Agency for Health Care Research & Quality
• Environmental Protection Agency
• WF Kellogg Foundation
• Ford Foundation
• Institutionalized Lay Participation on Review Panels
• Department of Defense Breast Cancer Research Program
• California Breast Cancer Research Program

• Beginning in early 1990s, supported various grant programs:
 Environmental Justice
 Community-Based Participatory Research (CBPR)
 Ethical, Legal, and Social Implications

• Community Engagement Cores required in major center and program grants ($1-16 million):
• Superfund Research Program
• Children’s Environmental Health Centers (joint with EPA)
• Breast Cancer and the Environment Research Centers
• Environmental Health Core Centers
– CBPR is part of many RFAs in the Partnerships in
Environmental Public Health Program (PEPH)
– Community Engagement Core in Superfund Research
Program Centers now able to have full research project

• Fundamental inequalities:
• Salary differentials
• Funds for infrastructure support
• Indirect costs at universities eat up much budget
• Legacy of “helicopter” research
• Institutional racism—predominance of white academics and scientists working in communities of color.
• Who represents the community?
• IRB: will university IRBs cover CBOs?
• Sampling design—aligning scientific standards for sampling with community groups’ needs

• CBOs & research: time consuming  mission drift?
• Enough time for evaluating collaborative processes and outcomes?
• What will happen if we have negative findings?
• Geographic distance between groups (e.g. SUNY Albany as partner with Alaska Community Action on Toxics)

CBPR and community-engaged teaching often use service learning projects:
 liven up class
 provide data not otherwise available
 show students relevant applications and prepare them for real-world applications
 offer capacity to teach ethics of academic-community partnerships
 teach students about how university serves its community

Publication Potential
Our CBPR and community-engaged work has been published in top journals
:
• Journal of Health and Social Behavior
• American Journal of Public Health
• Environmental Health Perspectives
• Environmental Health
• Environmental Science & Technology
• Social Science and Medicine
• Sociology of Health and Illness
• Science, Technology, and Human Values
• Health Affairs
• Sociological Forum

• Contested Illnesses Research Group (CIRG)
– Started 2000
– “Social science lab” – analog to science lab
– Currently two faculty, 3 postdocs, 6 doctoral students
– Weekly meeting for discussion of articles in progress, grant writing, guest scholars, discussion of outreach and engagement activities
– Training and socialization in all components of interdisciplinary work, much of it with biomedical scientists – this includes joint appointments, as with current Mellon postdoc in Environmental Studies and
Pathology, teaching a course in each

CIRG has published
 44 articles
 6 books
Contested Illnesses Research
Group, Brown University,
Providence RI

Forthcoming, Phil Brown, Rachel
Morello-Frosch, Stephen
Zavestoski, and the Contested
Illnesses Research Group
Contested Illnesses: Citizens,
Science and Health Social
Movements
December 2011
University of California Press
Contested Illnesses Research
Group, Brown University,
Providence RI

Highlights of CIRG students
Laura Senier – University of Wisconsin-Madison: joint appointment in Community and Environmental Sociology and Medical
School/Department of Family Medicine
-excellent score on K-grant
Brian Mayer - University of Florida:
Joint appointment in Sociology and Public Health
-co-PI on large program grant: NIEHS Deepwater Horizon grant
Sabrina McCormick – George Washington University – School of Public Health
-just finished as AAAS Fellow at EPA
-co-PI on multisite CDC grant on climate change and health
-PI on EPA grant on Deepwater Horizon oil spill
Rebecca Altman – Tufts University adjunct; freelance writer; board of Science and Environmental Health Network and collaborator with Sandra Steingraber
Elizabeth Hoover – Brown University:
Departments of Ethnic Studies and American Studies

• This is a central component of my vision and action through my research group
• We are very involved in Science and Technology Studies Program, which is one of few in the US which has predominance of non-social scientists
– Associate Dean of the College for Science provides space in Science
Center and some financial support
• Vice President for Research asked STS to arrange 2-hour presentation on relevance of STS to large science projects – NSF’s STS Program Director was lead speaker, along with Brown STS Program faculty and an outside scholar working on genetics
• Dean of the College now convening workgroup to either offer course on interdisciplinary work, or series of discussions

Funding Potential

Funding Potential
My research group has:
- Become the go-to location for social science involvement in large science projects at Brown
- Been engaged in long-term partnership with toxicologists, epidemiologists, exposure scientists at
Silent Spring Institute and University of California-
Berkeley

• What you’ll see from these examples is that by doing this kind of CBPR and related research, we are well-equipped to deal with:
– NSF requirements for “Broader Impacts”
• Dissemination to lay audiences, with lay involvement
• Contributions to public policy and regulatory agency needs
• Education and training component
• Ethics concerns integrated into both dissemination, outreach, and research itself
– NIH “Significance”
• Go beyond just significance to the field
• Talk about NIH mission (and also specific mission of Institute or
Center), which is increasingly about research translation, and often includes community involvement, if not CBPR outright
– Our ethics-related work has been especially helpful…

• Ethics training session for trainees of T32
Pathobiology Training Program and Superfund
Research Program
– Brings in faculty, as well as postdocs and students

COMMUNITY-BASED PARTICIPATORY RESEARCH:
CONTESTED ILLNESSES RESEARCH GROUP
• Community Environmental Health Research: Finding Meaning
– partners: Boston University, Toxics Action Center, Haverhill Environmental
League, Health-Link $958,576 (NIEHS)
• Collaborative Initiative for Research Ethics in Environmental Health
– partners: Syracuse University, Southeast Community Research Center,
University of North Carolina-Chapel Hill, University of Massachusetts-Lowell
approx $150,000, renewed for approx $150,000 (National Institute of Allergy and Infectious Diseases/National Heart, Blood, and Lung Institute)
– led to:
“Northeast Ethics Education Partnership for Research Ethics/Cultural
Competence Training” $397,984 (NSF)

COMMUNITY-BASED PARTICIPATORY RESEARCH:
CONTESTED ILLNESSES RESEARCH GROUP
Nanotechnology program grant
Micropatterned Nanotopography Chips for Probing the Cellular Basis of
Biocompatibility and Toxicity
$1,200,000 (NSF)
NSF required a Societal and Ethical Implications (SEI) component
-Based on Ethical, Legal, and Social Implications (ELSI) component mandated by Congress for Human Genome Research Institute
-Example of increasing requirements for social science and humanities involvement in natural and life sciences
The SEI Core helped develop graduate nanotechnology survey course, provided guest lectures, surveyed student perception of nano-ethics before and after course exposure, published results in Journal of
Nano Education

COMMUNITY-BASED PARTICIPATORY RESEARCH:
CONTESTED ILLNESSES RESEARCH GROUP
Interdisciplinary Katrina grants
“Katrina and the Built Environment: Spatial and Social Impacts”
$99,800 (NSF)
“Disaster, Resilience, and the Built Environment on the Gulf Coast”
$248,806 (NSF)
These included Sociology, Geology, Environmental Studies, Community
Health – methods included interviews, ethnographic observation, remote sensing, GIS, census analysis

COMMUNITY-BASED PARTICIPATORY RESEARCH:
CONTESTED ILLNESSES RESEARCH GROUP
Two large program grants
• Superfund Research Program: “Re-use in Rhode Island: A State-Based
Approach to Complex Exposures”
$11,520320, renewed for additional $15,392,906 (NIEHS)
– partners: Environmental Neighborhood Awareness Committee of
Tiverton, Woonasquatucket River Watershed Council. Environmental
Justice League of Rhode Island
• Children’s Environmental Health Center: “Formative Center for the
Evaluation of Environmental Impacts on Fetal Development”
$2,289,097 (NIEHS and EPA)
– partners: Silent Spring Institute, Environmental Justice League of
Rhode Island

COMMUNITY-BASED PARTICIPATORY RESEARCH:
CONTESTED ILLNESSES RESEARCH GROUP
• CARE For Environmental Justice in Rhode Island
– partners: Environmental Justice League of Rhode Island
$100,000 (EPA)

Of particular attention at Brown
• Our role in Superfund Research Program re-funding
– Community Engagement Core got highest score of all components, putting our application just above the next one, and assured funding
• Our role in community engagement and research translation
– Helps scientists consider how their work can be translated to various audiences
• Our community work makes up a significant part of Brown’s presence in the community
Of particular attention nationally
• Growing importance of research translation, e.g. at Superfund Research Program
Annual Meeting in October 2011, each scientific session was followed by a discussion of the research translation issues and offered suggestions for improvement
• NIEHS has moved beyond just requiring Community Engagement Cores and
Research Translation Cores major program and center grants – some now allow for a CBPR-based science project as one of the projects: Superfund Research
Program; Deepwater Horizon special grants program

Funding Potential

COMMUNITY-BASED PARTICIPATORY RESEARCH:
CONTESTED ILLNESSES RESEARCH GROUP
• Linking Breast Cancer Advocacy & Environmental Justice (NIEHS) and Research Right -to-Know:
Ethics and Values in Communicating Research Data to Individuals and Communities (NSF)
– partners: Silent Spring Institute, Communities for a Better Environment, UC-Berkeley
$959,800 (NIEHS) and $407,539 (NSF)
Led to:
– “Ethical and Legal Challenges in Communicating Individual Biomonitoring and Personal
Exposure Results to Study Participants: Guidance for Researchers and Institutional Review
Boards” $1,826,012 (NIEHS)
– adds partners: Harvard Law School and Harvard School of Public Health
– “Toxic Ignorance and the New Right-to-Know: The Implications of Biomonitoring for Regulatory
Science.” $407,539 (NSF)
– “Flame Retardant Chemicals: Their Social Discovery as a Case Study for Emerging
Contaminants” $432,676 (NSF)
– Addition (ViCTER) to “Ethical and Legal Challenges in Communicating Individual Biomonitoring and Personal Exposure Results to Study Participants: Guidance for Researchers and Institutional
Review Boards.” $1,205,048 (NIEHS) adds partners: Harvard Law School, Harvard School of Public Health, Harvard Department of
Computer Science

COMMUNITY-BASED PARTICIPATORY RESEARCH:
CONTESTED ILLNESSES RESEARCH GROUP
Led to other pending grant:
• “Data Sharing and Privacy Protection in Digital-Age Environmental Health
Studies” approx. $2,000,000 (NIEHS) adds partner: Harvard Department of Computer Science (additional computer scientist)

Junior faculty to need to be aware of issues
• Potentially longer time in data gathering
• More complexity in developing projects and writing proposals
• Potentially longer time in writing articles
• Need to ensure that chairperson and senior faculty understand
• Need mentorship from senior faculty in the larger community of engaged scholars

EXAMPLE OF COLLABORATION
Community organizer learning air sampling
Silent Spring Institute
Brown University
Communities for a Better Environment
University of California-Berkeley
Contested Illnesses Research Group, Brown University, Providence RI





Conduct community-based exposure assessment in Cape
Cod and Richmond, CA
Community-based outreach and education
Develop guidelines for reporting back study results to communities and individual study participants
Pilot test an intervention to reduce household pollutant levels
Contested Illnesses Research Group, Brown University, Providence RI

Contested Illnesses Research Group, Brown University, Providence RI

Organizationally:
 Citizens for a Better Environment has past history of scientific work
• Developed the “Bucket Brigade” for low-cost air sampling
• Tracking flares and emissions from the Chevron refinery
• Got MTBE cleanup rules
• Controlled dioxin dumping
 Build capacity to do research and challenge environmental contaminants
(specifically oil refineries and diesel emissions)
 But, it’s their community organizers, not trained in science, who do the air sampling in our project
Contested Illnesses Research Group, Brown University, Providence RI

Community residents:
 Trust in CBE’s past organizing work
 Concern over lived experience of intense pollution from refinery and multiple other sources
 Door-to-door recruiting educates and interests people
Contested Illnesses Research Group, Brown University, Providence RI

 Collaborative grant writing
 Monthly teleconference (later, often bi-weekly)
 Negotiate study site, sampling methods, and pollution sources to include
 Learn from each other on data collection
 Discuss how we gain as separate groups and as collaborative
 Share presentations, documents, connections to other groups

Participate at each other’s events
Contested Illnesses Research Group, Brown University, Providence RI


Choosing Bolinas as “clean” comparison site
 Develop a sampling frame that meets needs of both researchers and activists

How to get volunteers into sample

20+20=100%
Contested Illnesses Research Group, Brown University, Providence RI

Air Sampling Study in Richmond Follow-up Event
Saturday March 24 th 10am-12:45pm
All community members invited!
Food, Music, Questions & Answers
Located at Atchison Community Room-1 Collins & Curry Richmond, CA
(Near West MacDonald & Gerrard Blvd)
Speakers from
Silent Spring Institute, Brown University
& Communities for a Better Environment
BACKGROUND: In summer 2006 Communities for a Better Environment in Partnership with Silent Spring Institute & Brown University conducted an air sampling study in
Atchison and Liberty villages. We took air samples from indoor and outdoors in order to identify chemicals in the air that may be linked to illnesses such as asthma and cancer. The full results are expected to take up to a year from when the sample was taken. Attend this event to find out more about the study, the status and the organizations.
YOU MUST RSVP-SPACE IS LIMITED!
Jessica Guadalupe Tovar,
Community Organizer
Communities for a Better Environment
510-302-0430 ext 24 office 415-596-3517 cell
Contested Illnesses Research Group, Brown University, Providence RI

 Community meal  Scientific presentations in lay terms  Music
 Breakout sessions in English and Spanish
Contested Illnesses Research Group, Brown University, Providence RI

Contested Illnesses Research Group, Brown University, Providence RI

A Guide to Reading Your Results
Participant 47
10000
X
X shows the current EPA health guideline. If your bar is above the X , your results are higher than the guideline.
X
1000
100
10
X o o o o o o o o o o o o o
1
0.1
0.01
0.001
PM
2.
5
TC
o
X Your results are marked by
X orange bars. o o o o o o o o o o o o o o o o
o o o o
-
Each and each o o o chemical was not detected in your home.
o o
-
o o
The column of circles shows the range of concentrations measured.
-
X represents one other home’s indoor air result in the study,
O o o o bar is near the bottom, your result was lower than most.
o
If your bar is near the top, your result was higher than most; if your o o o o o o o o o o
X
-
-
X
N
H
3
N
H
4
N
O3-
As Cd Cl Cr Pb Ni S Va Zn abbreviation on the graph with the full name on the “Sources” chart.

Pesticides in Air
Participant 4
10000
1000
100
X
10
1
0.1
- o
X
0.01
0.001
X o o
-
X
X o
X o
X o
X o o o o o o o o
-
X
X o
D
D
T gC hlor
C hort h
C hlPy
D iaz
H ept
H
PT
E
M alt h
PC
Ph tPerm oPPh PipBO PrP x
T ri fl
Abbreviated Chemical Name
Contested Illnesses Research Group, Brown University, Providence RI

Median PBDE household dust concentrations across 6 regions in North America
5
4
3
2.7
3.8
Cape Cod, MA
Atlanta, GA
Washington DC
Ottawa, Canada
Boston, MA
N. California
2
0.37-1.0
0.25-0.67
0.73
1 0.07-0.17
0
BDE 47 BDE 99
BDE Congener
BDE 100
Contested Illnesses Research Group, Brown University, Providence RI

Atchison Village
Auditorium
April 5, 2008
Silent Spring Institute
Communities for a Better Environment
Brown University
University of California at Berkeley
Contested Illnesses Research Group, Brown University, Providence RI

 Common sources of the 155 chemicals tested


Industry (oil refining)
Cars and trucks

Consumer products (household pesticides, cleaners)
 Chemicals from outdoor sources industry & traffic

Richmond higher than Bolinas (outdoor & indoor)

Outdoor levels often lead to higher indoor levels
 Chemicals from indoor sources products, furniture, textiles

Fewer differences between Richmond and Bolinas


Indoor levels higher than outdoors
Outdoor air not an important source
Contested Illnesses Research Group, Brown University, Providence RI

• 155 chemicals tested
• More chemicals in
Richmond than
Bolinas
• 79 chemicals in
Richmond outdoor air
• 104 chemicals in
Richmond indoor air
Contested Illnesses Research Group, Brown University, Providence RI

31 Levels higher in Richmond
50 Levels similar across both communities
2
83 Total
Levels higher in Bolinas
Contested Illnesses Research Group, Brown University, Providence RI

Outdoor air: 31 Compounds that are higher in
Richmond compared to Bolinas
Mostly outdoor sources
 Sulfates


Nitrates
Metals (8)
Outdoor & indoor sources
 Particulate matter 
Mostly indoor sources
Phthalates (2)
 Disinfectant (1) 



Ammonia
PAHs (10)
Soot/Black carbon (2)
Organic carbon (4)
Contested Illnesses Research Group, Brown University, Providence RI

How
Much?
30
25
20
15
10
5
0
The dots above this line show the highest ~5% of results.
The box encloses the middle half of the results.
25% of the results are higher than the top of the box and 25% are lower than the bottom.
This line is the median – half of the results are higher and half are lower.
The dots below this line show the lowest ~5% of results.
Location

• Sources: cars and trucks, industries, smoking, and cooking
• Richmond is higher than Bolinas
• Indoor levels are higher than outdoor
• Particulates can cause respiratory and heart problems
Contested Illnesses Research Group, Brown University, Providence RI

Higher outdoor PM levels lead to higher indoor levels
Contested Illnesses Research Group, Brown University, Providence RI

• Sources: oil refining, power plants and other industries
• Richmond higher than Bolinas
• Higher outdoor levels lead to higher indoor levels
• Higher sulfate content in PM linked to more health problems
Contested Illnesses Research Group, Brown
University, Providence RI

• Sources: key marker for petroleum refining
• Richmond higher than Bolinas •Outdoor air is the major indoor source
Contested Illnesses Research Group, Brown
University, Providence RI

April 5, 2008 Community Meeting:
Residents Suggest Additional Comparison Sites and Research
Approaches





Study Vallejo where there is a power plant and where there are similar demographics; that could lead to a useful comparison of different areas that both have major pollution sources.
Why didn’t you test for mercury since I found it in my soil at
50X higher than acceptable levels?
Look at chemicals that are now at or near EPA and Cal-EPA standards, and tell Richmond government that the refinery expansion would likely lead to exceedances.
Use the Environmental Impact Review (EIR) to see which pollutants are predicted to rise, and then see if those are the same chemicals we are finding in our data
Community could fight by arguing that expansion could violate state legislation on greenhouse gas emissions.
Contested Illnesses Research Group, Brown University, Providence RI

April 5, 2008 Community Meeting:
Residents Push Action

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Will these data be useful to reduce exposure?
Richmond authorities should take this data to Chevron and push them to act appropriately in light of what we found.
Our data should be used to push the Richmond City Council to act on the community’s behalf.
“They should have rushed the doors when they were kept out of the hearing” [Chevron bused in 300 workers very early, leaving residents outside hearing]
Residents should write letters to the editor, including their personal experiences of living in Richmond.
Push City Council candidates for election and re-election to take a strong point on the refinery, using our data as ammunition
Everyone should speak at hearings, and that you don’t have to be a practiced speakers
– merely getting up and telling a personal experience of living with such contamination is eloquent in its own right
Contested Illnesses Research Group, Brown University, Providence RI


CBE’s Northern CA director and a community organizer presented some of the science, such as rationale for the project and sample selection

Residents clearly understood that we were not scientists collecting data to help ourselves, but that we were there with them strategizing on how to organize
 We were not treated as distant scientists who were presenting material, but as part of a team with the local organizers.
 The level of democratic science-making was very high.
Contested Illnesses Research Group, Brown University, Providence RI

 CBPR and community-engaged work:

Energizes faculty, students, academic departments

Provides excellent training

Offers wide potential for grants

Gives many outlets for top-quality publication

Provides great vehicle to integrate social, natural, and life sciences

Helps university better serve its many communities
Contested Illnesses Research Group, Brown University, Providence RI

• Interdisciplinary research between social scientists and biomedical researchers
– Taps an existing topic with only a few articles, which largely show drawbacks to sociologists
– My experience is far more positive, though there are some pitfalls
– Learn from experience of federal programs, especially NIEHS
– This will become increasingly common, so we need to learn more about it
– Social scientists are critical for CBPR, ethics, research translation
– Interviewing social scientists who are collaborating with biomedical scientists, with emphasis on environmental health