TechnoEdge Com Community-Based Participatory Research Colorectal

Introduction

Background

Interest in research that aims at improving the health of disadvantaged populations (minority, low-income, rural, central city, and other) has been on the increase. However, conventional research in these communities has a contentious history and offers limited opportunities to improve the health and well being of these communities.  Community-based participatory research (CBPR) can be viewed as a transformative research opportunity that unites the growing interest of health professionals, academics, and communities in giving underserved communities a genuine voice in research, thereby increasing the likelihood of intervention and success.  In 2001, participants from Agency for Healthcare Research and Quality (AHRQ) defined CBPR as “a collaborative process of research involving researchers and community representatives”.   CBPR engages community members, employs local knowledge in the understanding of health problems and the design of interventions, and invests community members in the processes and products of research. In addition, community members are invested in the dissemination and use of research findings and ultimately in the reduction of health disparities.  Participatory research in disadvantaged communities has a long and successful history in the social sciences and international and rural development.

There is a growing recognition of the importance and promise of this type of research within health services, public health institutions and funding organizations. However, in spite of the increased interest expressed by communities, universities, and funders, CBPR is underutilized. Practitioners of CBPR have identified several barriers to CBPR. These barriers include: 1. Poor community incentives and capacity to conduct CBPR. 2. Lack of academic incentives and the need to develop capacity for researchers and community-based organizations (CBOs) to partner in CBPR projects. 3. Inadequate funding and insensitive funding mechanisms (AHRQ, 2001).

Purpose

The purpose of this study will be to determine whether community involvement in colorectal cancer control can improve and sustain rates of screening and behavior change, above and beyond results achieved through more traditional public health measures.  This study will expand on the Albert Einstein College of Medicine Queens Library HealthLink  (QLHP) project.  QLHP is an ongoing study being conducted by Albert Einstein College of Medicine and other project collaborators. In the Queens Library project, the purpose of the study was to determine the impact of community involvement on cancer control screening and behavior change.  My study will be limited to community involvement impact on colorectal cancer.

The population for the Queens Library project is Queens County, New York,  the base for the study is the Queens Library system and the survey participants 18 years and over.  The population for my study is Bronx county (east and south Bronx) the base, the school system and survey participants, 50 years and over   The objectives of my study will be to examine 1) if CBPR leads to more effective colorectal cancer prevention and control in underserved communities compared to standard programs 2) How communities build upon and sustain locally developed initiatives for colorectal cancer prevention and health 3) whether and how long program effects are sustained after completion of the intensive collaboration.   The research problem is, does community-based participatory research (CBPR) lead to more effective colorectal cancer prevention and control in underserved communities compared to traditional, “top-down” programs?

Hypothesis

The study hypothesis is that community-based participatory processes involved in collaborative program development promotes gains in colorectal cancer control beyond those achieved through a comprehensive mix of high quality programs and services that were not developed and implemented with community involvement.  The overall hypothesis is that intensive participatory research intervention (IPR) is more beneficial in communities with lower social capital, fewer resources and greater barriers than standard programs.  This follows directly from the observation that the processes associated with participatory research (fostering lines of communication, identifying and mobilizing resources, persistent and iterative program planning) may each serve as antidotes to various challenges evident in underserved communities.

Background Literature

In a 2010 study, the authors sought to determine whether a community-based initiative designed to reduce cancer disparities among Pacific Islanders in Southern California increased communications between community-based organizations and university researchers.  A network analysis was conducted among 11 community-based organizations (CBOs) and 5 universities by interviewing 91 and 56 members of these organizations, respectively, at 2 points in time.  The conclusion was that cancer awareness, cancer education, and access to cancer services were low among Pacific Island groups, and the study provided an initial attempt to reduce these disparities. The findings revealed that community-based initiatives can strengthen a CBO network, creating the potential for increased community informed cancer research and improved community access to cancer research resources.  (Valente, Fujimoto, Palmer & Tanjasiri, 2010)

The authors Filbert, Chesser, Hawley, and St. Romain (2009) demonstrated how CBPR can be used successfully in promoting health.   This study showed a collaborative effort of Jefferson County Health Department (JCHD) staff, county school officials, and school nurses to find effective interventions to reduce childhood obesity in the rural county of Jefferson.  The research included body mass index (BMI) measurement for 11-year-old students (n =174) within a rural county during the 2005–2006 academic year.  This two-phase study of childhood BMI results, and subsequent obesity intervention program development, included community-specific data collection, community buy-in and CBPR, and evidence-based program activities, as recommended by previous research (Hawley et al., 2006; Mayer-Davis et al., 2004; Parra-Medina et al., 2004).  It was hoped that continued data collection and intervention development will permit a shift from overweight and obesity treatment to prevention, not only within schools but also in the family and community settings.   (Filbert et al., 2009)

In their study Sloane et al. (2003) demonstrated how CBPR could be used for effective health promotion in underserved communities.  The study was conducted in a Los Angeles metropolitan area.  The objective was to build health promotion capacity among community residents through a community-based participatory model, and apply this model to study the nutritional environment of an urban area to better understand the role of such resources in residents’ efforts to live a healthy life.  The design was a multi-phased collaborative study that took inventory of selected markets in targeted areas of high African-American concentration in comparison with markets in a contrasting wealthier area with fewer African Americans.  2 surveys of market inventories were conducted.   It was concluded that healthy food products were significantly less available in the target areas.  The authors concluded from these findings that the health disparities experienced by African-American communities have origins that extend beyond the health delivery system and individual behaviors since adherence to the healthy lifestyle associated with low chronic disease risk is more difficult in resource-poor neighborhoods than in resource-rich ones. (Sloane et al., 2003)

CBPR approaches that actively engage communities in a study are assumed to lead to relevant findings, trusting relationships, and greater satisfaction with the research process.  In this study, the authors examined community members’ perceptions of trust, benefit, satisfaction, and burden associated with their participation.  Corbie-Smith et al. (2003) conducted a randomized controlled trial to test a cancer prevention intervention in members of African-American churches. Data were collected at baseline and 1-year follow-up.  Data for these analyses were drawn from Partnership to Reach African Americans to Increase Smart Eating (PRAISE!).  PRAISE! was a 5-year randomized study (1996-2001) that included 60 churches in 8 North Carolina counties.  The project was designed to identify barriers and motivators to dietary change among African Americans, develop a theory-based culturally sensitive intervention, and test this 12-month intervention in a randomized trial conducted in African-American churches.  Perception of trust in the research project and the project team, benefit from involvement with the project, satisfaction with the project and the team, and perception of burden associated with participation were measured.  Overall, high levels of trust, perceived benefit, and satisfaction, and low perceived burden among community members were found in PRAISE!  Participants in the intervention group reported more perceived benefit and trust (P < .05). Participants in smaller churches reported more benefit, satisfaction and trust, while participants from churches without recent health activities perceived greater benefit, greater satisfaction, and lower burden with the project and the team (P < .05). Participants whose pastors had less educational attainment noted higher benefit and satisfaction; those whose pastors were making personal lifestyle changes noted higher benefit and satisfaction, but also reported higher burden (P < .05).  Understanding variations in responses to a research partnership will be helpful in guiding the design and implementation of future CBPR efforts.  (Corbie-Smith et al., 2003).

One of the challenges that face CBPR is sustainability.  Issues include sustaining relationships and commitments among the partners involved; sustaining the knowledge, capacity and values generated from the partnership; and sustaining funding, staff, programs, policy changes and the partnership itself.  In this study, the authors described key activities integral to the development of 3 community-based participatory research (CBPR) partnerships. Findings from 3 individual case studies were conducted at 3 urban research centers (URCs) in Detroit, New York City, and Seattle, which were initially established in 1995 with core support from the Centers for Disease Control and Prevention (CDC) were compared to identify crosscutting adaptations of a CBPR approach in the first 4 years of the partnerships’ development. The studies found activities critical in partnership development to include sharing decision making, defining principles of collaboration, establishing research priorities, and securing funding. Intermediate outcomes included sustained CBPR partnerships, trust within the partnerships, public health research programs, and increased capacity to conduct CBPR. Challenges included the time needed for meaningful collaboration, concerns regarding sustainable funding, and issues related to institutional racism. The URC experiences suggest that CBPR can be successfully implemented in diverse settings, (Metzler et al., 2003)

The authors Horowitz et al. (2008) conducted a study to show that diabetes prevalence and mortality are increasing, with minority populations disproportionately affected. Despite evidence that weight loss due to improved nutrition and increased physical activity can prevent or control diabetes, there is often a disconnect between this evidence and individuals’ lifestyles.  The study used the experiences, research, outreach, and literature review of East Harlem Diabetes Center of Excellence, a community-centered coalition, to build a conceptual model describing how local factors affect health behaviors and health outcomes such as obesity and diabetes. The model described the relationship between the physical environment, the social/medical environment and individual factors including demographic data, food and exercise beliefs and behaviors and health outcomes.  The coalition inserted local data from surveys and focused groups into the model to identify targets for future interventions, research, and activism.   The conclusion was that this type of collaboration and the model may be useful tools to help communities identify and address the deficits that prevent their residents from enjoying the health benefits of improved nutrition and increased physical activity, which also lead to racial and ethnic disparities in health.  (Horowitz et al., 2008)

In their literature review, Lilja, and Bellon (2008) posed questions and discussions about CBPR.  The questions included the following:  When should participatory research be used? How should participatory research be applied? What about quality of science in participatory research? Are there any institutional issues associated with the use of participatory research? What are the benefits and costs of participatory research?  They concluded that in reality, participatory approaches are often tried and used after the failure of conventional approaches.  Empowering participatory approaches are used to build or enhance capacities important for beneficiaries’ learning; such as, the ability to analyze opportunities, set priorities for innovations (change), seek information, experiment and draw conclusions, monitor and evaluate, and learn from mistakes. There has been little research on the conditions in which an empowering approach is most appropriate The quality of the participatory approach used is normally influenced by the researchers’ capacity to conduct participatory research, and their views on the effectiveness and appropriateness of participatory research, which in turn are shaped by their degree of training and experience in participatory approaches, the usefulness of that training and practical experience, and their perceptions of the need to build local capacity. It is better for individual project success to have connections to a variety of networks, rather than many connections within a single network. As far as cost benefit, the authors indicated that CBPR clearly produces better impact and is, therefore, more costly. The authors affirmed and concluded that the article was not a comprehensive literature review on participatory research, it was not meant to set standards for participatory research, nor to define what constitutes ‘good’ participatory research, but rather it sought to summarize the realities of implementing participatory research, as discussed and debated by several published authors, and to provide some useful background for this special issue. (Lilja & Bellon, 2008).

Summary

In recent decades, efforts to improve health have concentrated on academic institutions, producing outstanding basic science and clinical investigators and clinicians through well-established training, research, and clinical programs. The effective therapies developed and tested through research and disseminated through ever-improving quality of care, without question, have significantly contributed to improvement in life expectancy of Americans of all racial and ethnic backgrounds. Unfortunately, these diagnostic and therapeutic breakthroughs and healthcare spending have not eliminated health disparities for the majority of health conditions, even among populations with equal access to care. Nor have they reversed the poorer health of Americans compared with people in other nations who spend far less on health services (Horowitz, Robinson and Seifer 2009).  CBPR in public health has received considerable attention over the past decade, and numerous publications have described theoretical underpinnings, values, principles and practice, however, issues related to the long-term sustainability of partnerships and activities have received limited attention. (Metzler et al, 2003).

Methods

Research Design

The study will use research design similar to that used in the Albert Einstein Queens Library HealthLink project.  The method of my study will be quantitative experimental research, using a longitudinal survey instrument (Neutens & Rubinson, 2010).  The study takes the advocacy worldview approach as it analyzes the racially underserved population (Creswell, 2009).

Population, Sample and Participants

My research will be limited to East and South Bronx in New York where colorectal cancer cases are on the rise.  This population suffers from colorectal cancer disparities common among the medically underserved.  6,000 men and women 50 years and over will be surveyed.  The Bronx is the northernmost of the five boroughs of New York City. In 2010, the Census Bureau estimated that the borough’s population on July 1, 2009 was 1,397,287, inhabiting a land area of 42 square miles. This makes the Bronx the fourth-most-populated of the five boroughs, the fourth-largest in land area, and the third-highest in density of population.    As of the United States Census of 2000, there were 1,332,650 people, 463,212 households, and 314,984 families residing in the borough. The population density was 31,709.3/sq mi. There were 490,659 housing units at an average density of 11,674.8/sq mi. There were 463,212 households out of which 38.1% had children under the age of 18 living with them, 31.4% were married couples living together, 30.4% had a female householder with no husband present, and 32.0% were non-families. 27.4% of all households were made up of individuals and 9.4% had someone living alone who was 65 years of age or older. The average household size was 2.78 and the average family size was 3.37.The age distribution of the population in the Bronx was as follows: 29.8% under the age of 18, 10.6% from 18 to 24, 30.7% from 25 to 44, 18.8% from 45 to 64, and 10.1% 65 years of age or older. The median age was 31 years. For every 100 females there were 87.0 males. The 1999 median income for a household in the borough was $27,611, and the median income for a family was $30,682. Males had a median income of $31,178 versus $29,429 for females. The per capita income for the borough was $13,959. About 28.0% of families and 30.7% of the population were below the poverty line, including 41.5% of those under age 18 and 21.3% of those aged 65 or over. The ethnic composition of the borough in the 2000 Census (simplifying official classifications) was:

48.4% Hispanics and Latinos of all races (including 4.4% solely Black or African-American and 3.7% of two or more races)
31.2% Blacks or African Americans
14.5% Whites
2.9% Asians
2.0% Multiracial
0.9% Others (including Pacific Islanders and Native Americans, Alaskans or Hawaiians)
The Bronx has some of the nation’s highest percentages of Puerto Ricans and Dominicans with 24.0% and 10.0%, respectively. Based on sample data from the 2000 census, the U.S. Census Bureau estimated that 47.3% of the population five and older spoke only English at home, while 43.7% spoke Spanish at home, either exclusively or along with English. Other languages or groups of languages spoken at home by more than 0.25% of the population of the Bronx include Italian (1.36%), Kru, Igbo, or Yoruba [West Africa] (0.72%) and French (0.54%).The main European ancestries of Bronx residents, 2000 (percentage of total borough population): Italian: 5.2%; Irish: 3.2%; German: 1.3% (Wikipedia, the free encyclopedia, 2000) and (American FactFinder, 2000)

The Robert Wood Johnson Foundation issued a report on February 17, 2010 ranking counties on various measures of health. The findings show significant health disparities among counties in most states, including New York. Whether counties are ranked by “health outcomes” (rates of illness and death) or by “health factors” (characteristics that influence health), counties with large minority populations and high rates of poverty consistently rank as less healthy. Among New York City’s five counties (boroughs), Manhattan, Queens and Staten Island rank relatively high among the 62 counties in New York State. Brooklyn and the Bronx rank at or near the bottom.  The report went on to say that one of the most common types of cancer – colorectal – is also one of the easiest to treat at its earliest stages. Colonoscopy screening prevents colon cancer deaths by spotting and treating precancerous lesions before they become life threatening. New York City’s colonoscopy rates have increased significantly over the past eight years, and racial and ethnic disparities have virtually disappeared. From 2003 to 2008, the screening rate among New Yorkers 50 and older (at least one exam in the past 10 years) rose from 43% to 62% in the Bronx and from 38% to 63% in Brooklyn. (Scaperotti, & Tobin, 2010).

Data collection

This will be a collaborative effort among various organizations.  One college and 5 high schools will be used as base for this study.  In addition to data obtained from survey, this project will use data and facilities from the following organizations:

·         TechnoEdge Com (TEC),will provide overall project leadership, staff training to carry out phase I and II of the intervention and all data collection and analysis

·         American Cancer Society (ACS) Eastern Division will provide workshops focusing on topics related to colorectal cancer prevention, early detection and treatment.

·         Cancer Services Network, Inc. (Bronx) – Cancer Services Program of Eastern Bronx )  and Health and Hospital Corporation (Lincoln Medical and Mental Health Center) – Cancer Services Program of Southern Bronx will provide colorectal cancer screening visits from its mobile van, as well as data from the van.  They will also provide administrative data on health utilization aggregated by neighborhood.  It will provide all follow-up clinical care as needed.

The proposal is a population-based intervention, intended to improve colorectal cancer control at the community level.  The study will take three years. With the college and the 5 high schools as the base, 6 Bronx Colorectal Cancer Action Groups (BCCAG) will be formed.   This will comprise of a network of local organizations and stakeholders. These Groups will work with TEC over a period of 12 months to develop programs and services to benefit a wide range of residents within each target community.  It is expected that this intensive process of collaborative program development will lead to sustained improvements in key colorectal cancer control outcomes.  Both proximal and distal indicators of primary program outcome will be used to gauge the direct impact of project activities on information requests, screening and referral, as well as the diffusion of benefits to the wider community.   The Project is a population-based intervention, intended to improve colorectal cancer control at the community level.  In order to evaluate this intervention, an interrupted time-series design with multiple baselines will be used.  In this design, each community serves both as its own control and as a comparison for other communities.  Time progresses from top to bottom, over 36 months.

The first three months of the project will be a start-up period, during which time the first wave of data will be collected on colorectal cancer referral, screening and utilization.  Starting in month 4, training and materials will be provided to staff of 5 schools, so that the schools can begin to offer on-going access to a wide variety of available colorectal cancer education, information, referral, and screening programs.  This constitutes the control condition.   Services available in the control condition constitute an enhanced standard of care, in that they are all already available to the Bronx Community, but they are rarely organized and packaged to be readily and consistently accessible at a single site.  These services include low-reading difficulty educational materials and on-site programs offered by the American Cancer Society, screening through the NYS DOH Healthy Living Partnership, regular visits by the Cancer Services Network, Inc. Mobile Cancer Screening van, and follow-up care available through the (Lincoln Medical and Mental Health Center.   Under the control condition, all programs and services will be delivered following usual procedures:  Although the schools will serve as local hosts, programming is largely set in advance, with minimal community input.

Under the experimental condition all of the services in the control condition remain available, supplemented with an intensive, year-long process of community organizing, participatory research, program planning and implementation.  The experimental intervention will be organized by school-based TEC Specialists, trained to implement an expanded version of the ACCESS program development model (Rapkin et al, 2006).  The experimental intervention includes: the formation of the local Colorectal Cancer Action Groups (BCCAG) collection and presentation of local surveillance data to inform program planning by BCCAG; outreach measures to extend the reach and effectiveness of the standard ACS and Lincoln Medical and Mental Health Center services; and the initiation of new colorectal cancer programs and services to address unmet needs identified by the BCCAG.  Over a twelve month period, each BCCAG will receive information on community needs related to colorectal cancer, as well as feedback about the results of their programs.  Each BCCAG, as a result will have opportunities to revise and refine its strategies, and to test new approaches.  The intervention will begin in the first two communities in month seven.  Schools will continue to cycle on to the experimental intervention every four months, as earlier communities complete their intensive collaboration with the TEC Specialists.

After this one year process of intensive planning is finished, sustainability of the community planning approach and any on-going impact on rates of colorectal cancer screening and health behavior will be examined.  Although the TEC Specialists will discontinue their hands-on involvement with each BCCAG it is expected the BCCAG will remain in place as an established body to guide community colorectal cancer control efforts.   The idea is to see whether BCCAG can continue their work of community organizing and planning autonomously, with appropriate interaction with and support from public health providers.  Ideally, the activities and role of the BCCAG will be cemented in place after one year, making for a seamless transition after completion of the intensive intervention.  BCCAG may continue their activities in any way they see fit.  In order to support sustained gains, all enhanced standard (control condition) services will remain in place.  BCCAG may also initiate consultations with the TEC Specialists, and they may request local surveillance data, as they deem necessary.   The study will examine whether BCCAG stay in place and for how long, how their membership and activities change, and whether and how they continue to work with TEC Specialists, ACS, Cancer Services Network, Inc (CSN), Lincoln Medical and Mental Health Center and other public health providers.  All schools enter the program in the control condition.  Schools will spend between three and twenty-four months receiving the control condition (“enhanced standard services”).  Beginning in month four, two schools will transition into the experimental intensive participatory research intervention (IPR).

In addition to the experiment described above, structured personal individual survey interviewing techniques will be used to collect data.  .  Surveys will be conducted by TechnoEdge Com staff, with the help of student interns.  These students will conduct interviews in languages spoken by the local community. The individual face to face survey technique will be used because it will offer great efficiency in time and resources 6,000 men and women, 50 years and over will be interviewed by TEC project specialists and college interns. The surveys will be conducted in parks and street intercepts.  The rationale behind conducting the survey in parks is that.though, in 2006, the Bronx  was the third most densely populated county in the United States (after Manhattan and Brooklyn),about one-fifth of the Bronx’s area, and one-quarter of its land area, is given over to park land: about 7,000 acres (Wikipedia, the free encyclopedia. 2000).  Information will be asked anonymously, and individuals will not be tracked. Survey questions will include the following:  Participants eligibility to take the survey, social cohesion and trust in the community, informal social control, health coverage utilization, health information seeking needs, cancer knowledge, screen behavior, demographics and personal experiences with cancer.  With regards to screening behavior, questions will be limited to colorectal cancer screening.  Open-ended responses about what cancer related services respondents would like to see improved would be included in the personal experiences part of the survey to elicit free responses from respondents.  2 examples of Sigmoidoscopy and colonoscopy screening follow: Sigmoidoscopy and colonoscopy are exams in which a tube is inserted in the rectum to view the colon for signs of cancer or other health problems.  Have you ever had either of these exams?  Response: Yes/ No/ Don’t know/Not sure/Refuse IF YES: How long has it been since you had your last sigmoidoscopy or colonoscopy? Response: Within the past year (anytime less than 12 months ago) (1) Within the past 2 years (1 year but less than 2 years ago) (2) Within the past 3 years (2 years but less than 3 years ago) (3) Within the past 5 years (3 years but less than 5 years ago (4)Within the past 10 years (5 years but less than 10 years ago) (5) More than 10 years ago (6) Don’t know/Not sure (77) Refused (99) The survey questions will include open-ended questions such as asking participants what cancer prevention services they will like to see improved in their neighborhood.  This will offer the opportunity to develop an analysis from the information supplied by participants (Creswell, 2009).  Each participant will be given a card with a number to call to get information on colorectal cancer screening in their community.

  Distal Indicators (from community sampling or administrative data sources)

This will be modeled after techniques used in the Albert Einstein College of Medicine Queens Library HealthLink project.

·         Anonymous street intercept and parks surveys, measuring self reported colorectal cancer knowledge, colorectal cancer screening behavior and behavioral intentions, access to primary care, and exposure to school-based programs.

·         Trends in ACS referrals and screening, aggregated by zip code/ school service area.

·         Trends in CSN and Lincoln Medical and Mental Health Center primary care utilization and colorectal cancer screening, aggregated by zip code/ school service area.

·         Referrals to CSN and Lincoln Medical and Mental Health Center, including diagnosis and staging aggregated by zip code/ school service area.

The indicators will be tracked before, during and after the intensive collaborative program development intervention in each community.  The pre-experimental intervention period will range from 3 to 24 months across the 6 communities, during which period continuous assessment will occur. The data provided will be used to examine the stability of each of these population indicators and to establish pre-experimental trends in screening.  Measurements on whether, when and how changes in these indicators are associated with the presence of the intervention will be done. The proximal indicators are expected to be most sensitive to specific program activities.  Distal indicators should show movement as community members gain awareness of school-based programming, and as benefits of successive outreach and education efforts accrue.  The study will examine whether gains associated with this intervention are sustained over time by continuing to track these indicators after completion of the year-long intensive participatory intervention.

Data Entry

Data will be entered into Microsoft excel because it is user friendly and advantageous for the analysis.  Another reason is that data errors can easily be detected. SPSS will be used for data analysis

Data Analysis

This study will draw on a variety of sources of data to provide a thorough evaluation of colorectal cancer control indicators, intervention processes and contextual factors hypothesized to influence project implementation and outcomes.   For clarity, the rationale for each source and data collection method will be discussed. .The study will be a population based intervention and will use an interrupted time-series design with multiple baselines (Department of Education, 2005).  This approach is particularly well-suited to community intervention research because it is more practical than randomized controlled trials, and because it ensures that communities receive equal benefits of the research.  Outcomes indicators will be derived from anonymous street intercept and parks surveys on self-reported colorectal cancer screening, administrative data from CSN and Lincoln Medical and Mental Health Center and ACS, and school and van referrals records. Each of these measures will be drawn from numerous individual observations.  Analytic plans for specific study aims will be as follows.  The plans will be consistent with the recommended analytic strategies for group-randomized trials (Murray, Pals, Blistein, Alfano, Lehman 2005). Discussion will be based on the analysis of street intercept and parks data, although similar considerations will guide the approach to other measures. Aim 1.  To determine whether community-based participatory action research leads to more effective colorectal cancer prevention and control in underserved communities compared to traditional, “top-down” programs. Linear mixed-effects models with smoothing techniques (e.g., kernel estimation) will be the primary analytic method to model the time-varying changes in the primary endpoints (e.g., cancer knowledge, access to care, and information seeking).  The effect of the IPR intervention as compared to the standard intervention will be evaluated by the parameter estimate of a dummy variable that indicates the intervention condition.  A second time-dependent dummy variable will be created to indicate the sustainability phase.  The standard (control) intervention phase will be the reference level.  The statistical power of a mixed-effects model will be estimated using Horton, Brown and Qian’s (2004) simulation method.  The parameter estimate for the IPR dummy variable will be used to test the effectiveness of the proposed community-based participatory action research against the standard (control) phase.

Aim 2.    To examine how communities engage in the participatory research process, in order to develop locally tailored initiatives for cancer education, prevention and control.  Aim 2 will involve descriptive statistics to summarize the changes in process variables such as community cohesion and trust, program attendance, degree of contact with consultants, and changes in agency capacities.  These analyses will be primarily carried out at the school level.  The study will examine whether and how school readiness and community resources moderate the effects associated with collaborative program development through community-based participatory research.   The overall hypothesis is that IPR will be more beneficial in communities with lower social capital, fewer resources and greater barriers.  This follows directly from the observation that the processes associated with participatory research (fostering lines of communication, identifying and mobilizing resources, persistent and iterative program planning) may each serve as antidotes to various challenges evident in underserved communities.

Aim 3.    To examine whether and how long program effects are sustained after completion of the intensive collaborative program planning intervention.   In aim 3, mixed-effects models will be used to examine whether or not cancer knowledge measured by street intercept surveys during the sustainability phase is equal to that measured during the control phase.  The parameter estimate for the sustainability dummy variable will be used to test the sustainability of the proposed community-based participatory action research against traditional programs.  Similarly, mixed-effects models will be used to test the sustainability of the IPR program with respect to access to care and information seeking.

Before specific research questions are addressed, several types of data manipulation and exploratory analyses will be considered.  Transformations will be used if needed to produce variables that conform to the distributional assumptions.  Exploratory analyses will generally employ both the usual t-test and the Wilcoxon rank-sum test to protect against violations of normality assumptions.  Similarly, along with the usual analysis of variance procedures, Wilcoxon signed-rank tests will be used for paired data and Kruskal-Wallis tests will be used for k-group comparisons (Neutens & Rubinson, 2010).  Categorical variables, including dichotomous factors, will be summarized by proportions and compared among groups using Fisher’s exact test (Fay, 2010).

The descriptive and statistical analysis results will be presented in tables, and in text format. The report will be made available to the following stakeholders, TechnoEdge Com (TEC), the Bronx Community College (BCC) and the 5 high schools, American Cancer Society (ACS) Eastern Division, Cancer Services Network, Inc. (Bronx)- Cancer Services Program of Eastern Bronx, New York City Health and Hospital Corporation (Lincoln Medical and Mental Health Center) – Cancer Services Program of Southern Bronx.  The study will raise public awareness of colorectal cancer-related services and resources in the community.

Limitations of study design

Limitations of resources, time and money will prevent the study from surveying the entire city of New York.  Instead, sample will be drawn from east and south Bronx where colorectal cancer is prevalent.  Personal interview surveys are subject to manipulations and the interviewer could show biases in the data collection process.  There is the no way of verifying records, for example, medical records.  The findings of personal interview surveys are difficult to summarize.  While experimental methods are convenient; can be replicated; the variables can be adjusted; and cause-and-effect relationships can be established, the cost associated with this process can be very high.  Results typically cannot be generalized and securing cooperation can be a major hindrance for conducting the study (Neutens & Rubinson, 2010).

Ethical considerations

Data management issues

A Research Data Coordinator, Research Study Assistant (RSA), and pre-doctoral fellows will be assigned to the study.  Their responsibilities will include project compliance, data collection, abstraction and entry, data reporting, regulatory monitoring, problem resolution and prioritization, and coordination of the activities of the protocol to the study team.  The data collected for this study will be entered into a secure password protected database.  Source documentation, kept in a locked filling cabinate, will be available to support the computerized patient record..

Protection of human subjects

Survey information in this study will be collected anonymously and all responses will be kept confidential and stored on a secure database on the departmental drive. The standard privacy text will not apply to this study as no Protected Health Information (PHI) will be collected from participants.

Issues concerning research in community settings

This project will involve an intervention at the level of community sites. As such, it will raise unique concerns that do not arise in studies that sample only individuals.  It will be useful to anticipate and outline these areas of concerns and explain the efforts that will be made to maximize benefits and minimize potential risks of the research. Sampling and Recruitment of Communities:  The inclusive procedures for targeting neighborhoods, according to known or suspected colorectal cancer health disparities and barriers to care will be adopted.  All neighborhoods in this study will receive enhanced colorectal cancer-related services.  Community participation will be an open and inclusive process.  The main community participants, the BCCAG, will be selected to represent key segments of their communities.  By working at the neighborhood level, it will be easier to ensure that BCCAG are representative of their communities.  Confidentiality of Site-Level Information:  Communities will control access to their specific information. Investigators will discuss differences in cancer trends related to community characteristics, but will not associate findings with specific neighborhoods. Study investigators will work directly with BCCAG members in preparing case study reports, to ensure that community identities are protected.  Otherwise, information will not be reported or released in ways that would permit identification of specific locales. Limits to Confidentiality of Specific Sources within Schools, and Safeguards:  Schools will serve as the home base for this project in 6 communities.  Data on Schools will be gathered from staff.  The study will ensure that these individuals are fully aware that the study plans to use information from interviews to describe School Readiness and Capacity.  The coding system will integrate and triangulate data from several sources, which will serve to obscure sources of any particular perspective.  Community Oversight:  Communities participating in the study will control access to their specific information. Investigators will discuss differences in cancer trends related to community characteristics, but will not associate findings with specific neighborhoods. Study investigators will work directly with BCCAG members in preparing case study reports, to ensure that community identities are protected.  Otherwise, information will not be released or reported in ways that would permit identification of specific locales. Emphasis on Tailoring Over Targeting in Resource Dissemination and Training:  Focus will not be lost on the possibility that capacity-building programs can promote the “rich getting richer” syndrome.  Information yielded by setting and community evaluations could demonstrate that greater baseline capacity to get involved in colorectal cancer outreach leads to greater success.   This might encourage some to steer resources to higher-resource communities and settings. At times this may be appropriate. However, in order to reach the most vulnerable of the underserved, it may be necessary to tailor programs to schools and communities that are not “ideal” in terms of setting readiness. Although capacity building with resource-poor sites may seem to slow the diffusion of colorectal cancer screening and information, ultimately this may be the only way to reach certain groups in greatest need and reduce disparities.  As discussed, the study will hypothesize that participatory planning may be particularly beneficial in these communities.

Informed consent procedures

Written consent will not be obtained from survey participants, as all data collected will be collected anonymously.  Information on gender, race or other minority status will be collected as such information about participants is related to project aims and research questions.  Participants will be informed of the purpose of the study and the fact that they can skip interview questions or end the interview at any time.  Standard informed consent procedures will be waived for this study for the following reasons: 1. the research presents no more than minimal risk of harm to subjects and involves no procedures for which written consent is normally required outside of the research context. 2. The only record linking the subject and the research would be the consent document and the principal risk to any participant would be potential harm resulting from a breach of confidentiality. Standard research authorization procedures will be waived for the following reasons: 1. the research presents no more than minimal risk of harm to subjects and involves no procedures for which written consent is normally required outside of the research context 2. The only record linking the subject and the research would be the consent document and the principal risk to any participant would be potential harm resulting from a breach of confidentiality.  Finally, interviewers will be required to be HIPAA certified

Summary and Implication for Intervention and for Public Health

Community-based participatory research (CBPR) has emerged in the past decades as an alternative research model, which integrates education and social action to improve health and reduce health disparities.  Through the use of quantitative, experimental method, this study will show that in underserved communities, participatory research intervention can promote gains in colorectal cancer control beyond benefits that can be achieved through a mix of high quality programs and services that were not developed and implemented with community involvement. Intensive participatory research intervention (IPR) is more beneficial in communities with lower social capital, fewer resources and greater barriers than standard programs.  It is expected that programs that are formed will be sustained and that the Bronx Colorectal Cancer Action Group (BCCAG) that is formed will stay in place and continue its activities and partnerships with collaborators and other public health providers long after the study and funding is over.

The study will raise public awareness of colorectal cancer-related services and resources in the community. Programs and services that are developed will benefit a wide range of residents within each target community.  It is expected that neighborhoods and schools will benefit from participation in this project in several ways, through capacity building in areas needed to plan and implement colorectal cancer-related programs, such as grant writing and staff training. Schools and Bronx Colorectal Cancer Action Groups will receive media materials, barometer and indicator data and summary data reports at no cost.  Thus, the target community specifically, and New York City in general is expected to benefit from the programs that are set up as a result of the research.

References

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U.S. Census Bureau (American FactFinder), (2000), Bronx County, New York.  Profile of General Demographic Characteristics. United States. Retrieved  from http://factfinder.census.gov/servlet/SAFFFacts?_event=&geo_id=05000US36005&_geoContext=01000US%7C04000US36%7C05000US36005&_street=&_county=Bronx&_cityTown=Bronx&_state=04000US36&_zip=&_lang=en&_sse=on&ActiveGeoDiv=&_useEV=&pctxt=fph&pgsl=050&_submenuId=factsheet_1&ds_name=ACS_2008_3YR_SAFF&_ci_nbr=null&qr_name=null&reg=&_keyword=&_industry=

U.S. Department of Health & Human Services. (Agency for Healthcare Research and Quality). (2001). Community-based participatory research, conference summary. Retrieved from   http://www.ahrq.gov/about/cpcr/cbpr/cbpr1.htm

Corbie-Smith, G. Ammerman, A. S. Katz, M. L. St. George, D. M. M. Blumenthal, C. Washington, C Weathers, B. Keyserling, T. Switzer, B. (2003). Trust, benefit, satisfaction, and burden.  Journal of General Internal Medicine, 18(7), 531-541

Creswell, J.W. (2009). Research design qualitative, quantitative, and mixed methods approaches, 3rd edition, Thousand Oaks, CA: Sage Publications, Inc.

Department of Education. (2005). Scientifically-based evaluation methods. Federal Register, 70(15), 5. Retrieved from http://www2.ed.gov/legislation/FedRegister/finrule/2005-1/012505a.pdf

Filbert, E., Chesser, A., Hawley, S. R., St. Romain, T. (2009). Community-based participatory research in developing an obesity intervention in a Rural County. Journal of Community Health Nursing, 26(1), 35-43

Horowitz, C.R., Goldfinger, J.Z., Muller, S.E., Pulichino, R.S., Vance, T.L., Arniella, G., Lancaster, K.J. (2008).A model for using community-based participatory research to address the diabetes epidemic in East Harlem. Mount Sinai Journal of Medicine, 75(1), 13-21

Horowitz, C.R., Robinson, M., Seifer, S. (2009). Community-based participatory research from the margin to the mainstream. American Heart Association, 119:2633-2642. Retrieved from   http://circ.ahajournals.org/cgi/content/full/119/19/2633

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