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Keywords:

  • community health networks;
  • urban populations;
  • rural community;
  • access to health care;
  • minority groups;
  • clinical trial;
  • education;
  • training;
  • cancer disparities research;
  • policy

Abstract

  1. Top of page
  2. Abstract
  3. Background
  4. MATERIALS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. Acknowledgements
  8. REFERENCES

The unequal burden of cancer in minority and underserved communities nationally and in Maryland is a compelling crisis. The Maryland Special Populations Cancer Research Network (MSPN) developed an infrastructure covering Maryland's 23 jurisdictions and Baltimore City through formal partnerships between the University of Maryland School of Medicine, University of Maryland Statewide Health Network, University of Maryland Eastern Shore, and community partners in Baltimore City, rural Eastern Shore, rural Western Maryland, rural Southern Maryland, and Piscataway Conoy Tribe and statewide American Indians. Guided by the community-based participatory framework, the MSPN undertook a comprehensive assessment (of needs, strengths, and resources available) that laid the foundation for programmatic efforts in community-initiated cancer awareness and education, research, and training. The MSPN infrastructure was used to implement successful and innovative community-based cancer education interventions and technological solutions; conduct education and promotion of clinical trials, cancer health disparities research, and minority faculty cancer research career development; and leverage additional resources for sustainability. MSPN engaged in informed advocacy among decision- and policymakers at state and national levels, and its community-based clinical trials program was recognized by the U.S. Department of Health and Human Services as a Best Practice Award. The solutions to reduce and eliminate cancer health disparities are complex and require comprehensive and focused multidisciplinary cancer health disparities research, training, and education strategies implemented through robust community–academic partnerships. Cancer 2006. © American Cancer Society.

The unequal burden of cancer in minority and underserved communities nationally and in Maryland is a compelling crisis that requires intensive scientific and community training and translation of innovative research results and solutions. Solutions to reduce and eliminate cancer health disparities are complex and require comprehensive, multidisciplinary strategies. In an effort to address this compelling national problem, the National Cancer Institute (NCI) established the reduction and eventual elimination of cancer health disparities as a priority by funding 18 Special Populations Networks (SPNs)1 and establishing the Center to Reduce Cancer Health Disparities. The Department of Health and Human Services (DHHS) provided a framework for fostering actions to eliminate cancer health disparities.2

The purpose of this paper is to describe approaches adopted by the Maryland Special Populations Cancer Research Network (MSPN) to support the development of a comprehensive community-based infrastructure used to conduct cancer health disparities education and research, train minority researchers, leverage additional resources, and develop policy initiatives.

Background

  1. Top of page
  2. Abstract
  3. Background
  4. MATERIALS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. Acknowledgements
  8. REFERENCES

State of Maryland

Maryland comprises 23 jurisdictions and Baltimore City. The state is divided into 5 regions: Baltimore Metro, comprising Baltimore City and 5 surrounding counties; Northwest Maryland (or Western Maryland); the rural Eastern Shore of Maryland; the National Capital area; and Southern Maryland. Maryland is 81% urban and 19% rural, with nearly one-fifth (or nearly 900,000) of the state's total population residing in rural areas. Seventeen jurisdictions have 25% or greater of their population classified as rural. The state's racial distribution is 71% white, 25% black, with the remainder being Asian, Hispanic, and American Indian.3

Cancer disparities in Maryland

As in the United States as a whole, cancer in Maryland and its impact on minority and underserved rural populations is an important health issue. Maryland ranks sixth nationally in cancer mortality,4 and the disparate cancer incidence and mortality rates are further compounded by poor access to existing quality health care services for cancer prevention, early detection, and treatment. Transportation and cost barriers are additional hurdles for those residing in rural communities. Minority populations have been, and continue to be, underrepresented in cancer research, particularly prevention research. Blacks are more likely to develop cancer than are whites for all cancer sites except female breast.4 Age-adjusted mortality rates for black males are substantially higher than for whites in Maryland4 and in NCI Surveillance, Epidemiology, and End Results (SEER) regions, which provide cancer incidence and survival data across the United States.5 Age-adjusted mortality rates for all sites are higher in Baltimore City, and in the Baltimore Metro, Eastern Shore, and Southern Maryland regions than in the state as a whole,4 as well as in SEER regions.5 Whites have a higher proportion of localized disease at diagnosis, whereas blacks are proportionally more likely to be diagnosed at regional and distant stages of disease.6

Cancer health disparities exist for Maryland's American Indian populations. Between 1990 and 2001, American Indian death rates in Maryland were lower than rates among whites and blacks. However, regional variations in death rates among American Indians existed, with higher death rates in the Southern Maryland and Capitol regions than in other regions in Maryland. (These rates should be interpreted with caution, as American Indians and Alaska natives may have been counted as “white” or “other” on death certificates.7)

Minority communities in rural areas have poorer health outcomes. Mortality rates are higher for blacks than for whites in Baltimore City and for each quartile of rural population within Maryland counties. Among blacks, mortality rates increase as the proportion of rural population within Maryland counties increases. Other than in Baltimore City, mortality rates are highest among blacks in Maryland counties where 75% or more of the population is rural. In the most rural counties (e.g., Caroline county on the Eastern Shore and Garrett county in the Northwest region), blacks were 52% more likely than whites to have died from cancer.5

Cancer risk factors

A baseline needs assessment conducted by University of Maryland researchers revealed a high prevalence of cancer risk factors among Maryland residents, who reported risk behaviors such as tobacco use, poor diet, and lack of exercise.8 More than one-third of adults who reported ever smoking cigarettes currently do so every day. Black males (37.7%) were more likely than white males (34.1%) and the uninsured (61.7%) were more likely than the insured (32.7%) to report currently smoking cigarettes every day. A small but notable proportion of adults, especially in Northwest Maryland, reported using chewable tobacco (7.2% vs. 4.4% in Baltimore City and 6.3% on the Eastern Shore). White males (13.5%), compared with black males (5.9%) and white females (1.3%), were more likely to report ever using chewable tobacco. According to an MSPN study conducted at the request of the Piscataway Conoy Tribe, among American Indians who reported currently smoking, 12.5% reported smoking at least 2 packs of cigarettes per day.8

Access to health care

Maryland's large rural population experiences restricted access to health care services. Ten counties in Maryland are designated federal Primary Care Health Professional Shortage Areas, including 9 in Western Maryland or on the Eastern Shore and 1 in Southern Maryland. Seven counties in Maryland are designated federal Medically Underserved Areas or Medically Underserved Populations, including 5 on the rural Eastern Shore, 1in rural Western Maryland, and 1in Southern Maryland.

Approximately 1 in 4 Marylanders in Baltimore City (23.7%), the Eastern Shore (25.2%), and Western Maryland (25.2%) do not have a regular source for medical care. Black males (29.0%), compared with white males (22.3%), are more likely not to have a regular source of care. More than 1 in 10 adults in Baltimore City (14.4%), the Eastern Shore (10.9%), and Western Maryland (12.1%) who needed to see a physician could not because of the cost of health care. Black males (11.0%) and females (17.8%) are proportionally more likely than white males (6.9%) and females (14.1%) to indicate needing to see a physician but not being able to do so because of cost.8

Goals and objectives

MSPN's goals are to support the development, implementation, and evaluation of a sustainable and robust infrastructure; promote cancer awareness; and launch cancer control activities and research in minority and medically underserved communities.9 The target geographic areas are Baltimore City, the rural Eastern Shore, Southern Maryland, and Western Maryland, as well as American Indians across the state. Priority populations include blacks, American Indians, the urban and rural underserved, and Hispanics/Latinos.

MSPN's objectives were designed to produce 1) long-term improvement in cancer statistics for minorities and underserved communities through enhanced utilization of beneficial, evidence-based education interventions; 2) a robust cancer health disparities research program that emphasizes translational, clinical, and population sciences research; 3) a minority faculty cancer research career development program designed to increase the number of minority researchers focusing on cancer health disparities; 4) an increased number of minority researchers in Maryland who receive competitive NCI grant funding; 5) increased availability and participation in clinical trials by minorities and underrepresented communities; 6) leveraged resources from federal and private sources for sustainability; and 7) cancer health disparities policy formulation in Maryland and nationally.

Rationale

MSPN's rationale can be seen in the prevalent cancer health disparities experienced by Maryland's minority and underserved rural and urban communities. The MSPN has contributed greatly to capacity enhancement and empowerment of minority and underserved rural and urban communities in Maryland. Maryland's minority and underserved communities are unique, and resolution of their health problems requires understanding of the circumstances that give rise to those problems and recognition of the need to devise enlightened and innovative community-driven solutions.

MATERIALS AND METHODS

  1. Top of page
  2. Abstract
  3. Background
  4. MATERIALS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. Acknowledgements
  8. REFERENCES

MSPN's infrastructure covers the state's 23 jurisdictions and Baltimore City, with a special emphasis on rural and urban geographies with documented health disparities. The underlying principles of MSPN are community participation and ownership by members of the MSPN, their partners, and geographic regions and populations (MSPN's focus). These principles have been incorporated into all infrastructure development and programmatic activities (research, training, and education).9 Members and partners serve as equal participants, each sharing governance, responsibility, and accountability for this community Network. Figure 1 presents the schematic representation of the MSPN's conceptual framework (adapted from Chapel10).

thumbnail image

Figure 1. MSPN conceptual framework.

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Organizational Structure

MSPN's infrastructure is built around formal community-based, collaborative regional partnerships (i.e., the primary community subcontractors who are regional Principal Investigators) and key partners, including the University of Maryland Statewide Health Network, a community-based statewide and regional infrastructure focused on cancer and tobacco-related diseases prevention and control activities. Academic partners include the University of Maryland School of Medicine (UMSOM) and the University of Maryland Eastern Shore (UMES), a historically black college and university and minority serving institution. A headquarters office located in Baltimore City coordinates the activities of the primary subcontractors. Figure 2 provides a schematic representation of the MSPN partnerships, functions, and outcomes.

thumbnail image

Figure 2. Overview of MSPN partnerships, functions, and outcomes.

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Key partners

MSPN's key partners include NCI's Mid-Atlantic Cancer Information Service, the Appalachian Cancer Network (another NCI-supported SPN), the American Cancer Society, the Centers for Medicare and Medicaid Services, and the state health department. As part of MSPN's community empowerment and capacity enhancement efforts, academic and key partners facilitate technical assistance to primary subcontractors in areas including linking resources to need; program planning, implementation, and evaluation; grant writing; region- and population-specific data on cancer and cancer risk factors; and cancer health disparities research. The key partners serve on the MSPN Steering Committee.

Primary community subcontractors

The 5 primary community subcontractors are based in Baltimore City, the rural Eastern Shore, rural Southern Maryland, the Piscataway Conoy Tribe (serving native American tribes across the state), and rural Northwest Maryland. Primary subcontractors develop and coordinate ongoing community outreach and education activities in their targeted areas and among priority populations, as well as assist academic partners with the identification of cancer health disparities research opportunities in their re spective communities. MSPN's primary subcontractors include community-based leaders and organizations representing priority populations and urban and rural geographic areas that experience reportable cancer health disparities.

Baltimore city

The Baltimore City subcontractor, Times Community Services (Mrs. Joy Bramble, PI), focuses on the Baltimore Metropolitan area. Using church, African American print and broadcast media, and community-based education and outreach efforts, this subcontractor promotes awareness of cancer prevention and screening and clinical trials to the general public and health providers.

Eastern shore

The Eastern Shore subcontractor is Dr. Mary DeShields, PI (Eastern Shore Oncology, PC), a rural oncologist focused on community and health professional education on clinical trials availability, attitudes, and benefits to participation. This subcontractor conducts awareness programs in church and community settings, which have proven successful for engaging the Eastern Shore community in cancer control efforts and has earned a Best Practice Award from the DHHS.

Southern Maryland

The Southern Maryland subcontractor, C. Datcher Associates (Dr. Delores Datcher, PI), concentrates on churches and community-based organizations to foster awareness and increase participation in cancer screening, prevention–detection modalities, and trials. An intensive Patient Navigation program has been developed.

Piscataway-Conoy Confederacy and Subtribes and statewide native American tribes

The Honorable Mervin Savoy, Tribal Chair PCCS, initially focused on Piscataway Tribal-specific education and outreach and later expanded these programs to include the 28 native American tribes in the state. This focus has been tribal education on cancer prevention, screening, and benefits of research participation, including participation in clinical trials.

Western Maryland

Northwest Maryland subcontractor, Mr. Kery Hummel (Western Maryland Area Health Education Center), was added to the MSPN in 2002. As part of Appalachia, this subcontractor focuses on community and health professional education on cancer control, clinical guidelines, and smokeless tobacco cessation.

Needs Identification (Research, Education, and Training)

MSPN conducted a comprehensive needs assessment in each target area to design and implement infrastructure and programmatic (education, research, and training) initiatives. The assessment utilized both conventional and participatory approaches. Conventional approaches included analysis of data from archival sources (Maryland Cancer Registry data and the Maryland Behavioral Risk Factors Surveillance Survey). MSPN also utilized qualitative (key informant interviews and focus groups) and quantitative methods (in-person interviews and telephone surveys) to document prevailing cancer health needs; prevalence of cancer-related risk factors; attitudes and beliefs regarding screening, prevention, and early detection; access to health care services; and knowledge and beliefs regarding clinical trials. The participatory approach included participation of community members and stakeholders (leaders of community organizations, Native American tribal leaders, members of the Ministerial Alliances, and members from state and local health departments) with knowledge of local issues (including needs, strengths, resources) and researchers with specialized knowledge in methods of inquiry. The assessment entailed colearning, enhancing influence, and capacity-building for community members, stakeholders, and researchers. MSPN's community and academic partners used data and input from these conventional and participatory methods to develop logic models.

RESULTS

  1. Top of page
  2. Abstract
  3. Background
  4. MATERIALS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. Acknowledgements
  8. REFERENCES

MSPN's objectives were designed to produce a credible and sustainable impact in the areas of cancer health disparities education, training, and research. Following is a summary of some of MSPN's noteworthy programmatic initiatives.

Cancer Awareness and Education

The objective of MSPN's cancer awareness and education efforts was to achieve long-term improvement in cancer statistics and outcomes for minorities and other underserved communities through enhanced utilization of beneficial, evidence-based education interventions. Based on the needs identification, MSPN designed a comprehensive, community-based outreach and education plan whose aim was to provide tailored health information specifically targeting MSPN's priority populations' needs. This plan was implemented in partnership with other governmental (e.g., local health departments) and nongovernmental (e.g., American Cancer Society, local coalitions of concerned agencies) partners. Outreach and education programs focused on the prevention and early detection of cancers of the lung, breast, cervix, skin, colon-rectum, mouth, and prostate. The intended outcomes of outreach and education programs ranged from the short-term raising of awareness about specific cancer health issues to more long-term change toward medically reasonable knowledge and attitudes that may promote healthy, risk-reducing practices and behaviors conducive to promoting disease prevention and early detection of cancers. Outreach and education programs utilized multiple channels (such as print and broadcast media, health fairs, and small group presentations in faith-based organizations, tribal and community centers, and sporting events) to communicate health messages and provide information about community resources. When appropriate, outreach and education programs provided baseline screening services and health evaluations.

This comprehensive strategy has been successful in promoting positive health behaviors in the MSPN target areas. Analysis of the Behavioral Risk Factor Surveillance System data for Maryland, for the period 1995–1999, when compared with the period 2000–2002, provides preliminary evidence of the effectiveness of MSPN's cancer awareness and education program. During the period 2000–2002 (compared with the period 1995–1999), there were substantial positive changes in the proportion of Marylanders residing in the MSPN geographies, compared with those residing in non-MSPN geographies, who self-reported obtaining screening examinations for cancers of the breast, colon-rectum, and cervix. For example, between the periods 1995–1999 and 2000–2002, there was a

  • 7.11% increase in the proportion of Marylanders 50 years and older residing in the MSPN geographies who self-reported obtaining a fecal occult blood test within the past year to screen for colorectal cancer (vs. 3.30% increase in the proportion who self-reported in non-MSPN geographies, P < .0001);

  • 4.02% increase in the proportion of Marylander women 40 years and older who self reported ever having obtained a mammogram (vs. 3.86% increase in the proportion who self-reported in the non-MSPN geographies, P < .0001);

  • 3.72% increase in the proportion of Marylander women 40 years and older who self-reported obtaining a mammogram within the prior 2 years (vs. 2.55% increase in the proportion who self-reported in the non-MSPN geographies, P < .0001); and

  • 2.89% increase in the proportion of Marylander women aged 18 years and older who self-reported having obtained a Pap smear within the prior 3 years (vs. 1.31% increase in the proportion who self-reported in the non-MSPN geographies, P < .0001).

MSPN developed and/or adapted several beneficial, evidence-based educational programs that are being documented as promising practice models for wider dissemination. Some of these exemplary programs include You Ought To Be In Pictures—A Maryland Susan G. Komen Foundation supported Community Mammography Project; Open Wide, Look Inside and It Ain't Worth Spit (both oral cancer awareness and screening and spit-tobacco prevention programs); and Navigating the Underserved Through the Health Care System.

Education and Promotion of Clinical Trials

Assuring diversity in clinical trials participation is a national priority. However, minority, uninsured, and rural-dwelling persons have lower participation in clinical trials. As part of the UMSOM commitment and MSPN objective to enhance awareness and availability of clinical trials in minority and rural communities, MSPN's Principal Investigator and the Eastern Shore's primary subcontractor developed a model program to support community cancer clinical trials. In 2004, the program titled A Model for Increasing Availability of Community-Based Cancer Clinical Trials in Rural Eastern Shore Maryland was designated a national Best Practice Initiative by the US DHHS.11 The program is an equal partnership between an academic institution (UMSOM), a rural community cancer center (Eastern Shore Oncology, PC), and the Shore Health System's Regional Cancer Center. The goal of this program is to increase the availability of cancer clinical trials and increase patient (especially minority patient) enrollment in cancer trials. The program's objectives are to establish a clinical–academic partnership that fosters increased availability of cancer trials; provide intensive health care professional continuing education on clinical trials; provide intensive community awareness and education programs on clinical trials for the general public and minority communities; and provide clinical trials infrastructure support. This program has resulted in a 10-fold increase in availability of cancer clinical trials and a 16-fold increase in the number of open treatment and prevention trials targeting breast, lung, and prostate cancers at Shore Health System's Regional Cancer Center. In addition, this regional cancer center has seen a 30-fold increase in cancer patients accrued to cancer trials, and an increase in membership by the Regional Cancer Center in cancer cooperative groups and the NCI Cancer Trials Support Unit. Specifically, this program has resulted in a 25% increase in the number of African Americans enrolled in SELECT (the Selenium and vitamin E Cancer Prevention Trial), a national prostate cancer prevention trial.

Pilot Research Program

The MSPN pilot research program, guided by the health disparities model proposed by Baquet et al.,12 comprises 4 components: 1) surveillance research to define, document and monitor disparities; 2) explanatory research on disparity etiology and cause; 3) intervention research development and evaluation; and 4) translation/application of research results to reduce or eliminate disparities. The MSPN research program emphasizes academic–community collaborative participatory research principles in the definition of the research topics that address specific community needs or concerns, formal mentoring of junior investigators and community partners, collaborative development and implementation of research protocols, and dissemination of findings to both community and scientific audiences.

 The MSPN pilot research portfolio consists of studies on the basic, clinical, and population sciences. Research in the basic sciences has focused on correlating biological markers with lifestyle, behavioral, and diet/nutrition factors, including exploring whether the dietary habits and microflora profiles differ between blacks and whites on the Eastern Shore. Re search in the clinical sciences has focused on enhancing utilization of age-appropriate cancer screening and early detection examinations by minority women. Findings from a study suggest that compared with white women, black women prefer having a provider of the same race and are more mistrustful of the medical system.

 Population sciences research focused on surveillance and intervention. An example of the surveillance research is the randomized, population-based Health Disparities Survey8 of 5154 adult (18 years and older) residents of Baltimore City, Northwest Maryland, and the Eastern Shore. The survey sample was obtained using random digit dialing methodology and employed computer-assisted telephone interview data collection procedures. The survey instrument was conceptualized on 8 general modules: health status; health care coverage and satisfaction; lifestyle factors, such as nutrition, exercise, weight control, and alcohol and tobacco use (including smokeless tobacco); gender-specific questions on cancers of the breast, cervix, and prostate, as well as colorectal cancer, including utilization of screening and early de tection examinations; preventive behaviors for cancers of the skin and mouth; other health issues, including hypertension, cholesterol, and cardiovascular disease; clinical trials knowledge, attitudes, information sources, and barriers to participation; and sociodemographics. Data from this surveillance study guided the development of hypothesis generation and/or testing of exploratory studies, as well as the implementation of evidence-guided targeted and tailored cancer control education interventions.

Minority Faculty Cancer Research Career Development

The UMSOM and UMES, in part through their collaboration with MSPN as the 2 academic institutions, developed a formal research, training, and community outreach partnership. This partnership was awarded 2 federal grants: 1) NCI grant number U56CA096302, “UMES/UMSOM Comprehensive Partnership for Cancer Research, Training, and Outreach,” on which Drs. Baquet and Mack serve as co-Principal Investigators; and 2) NIH grant number P60MD000532 from the NIH EXPORT Center, “University of Maryland Comprehensive Center for Health Disparities Re search, Training, and Community Outreach.” An important aspect of the UMES/UMSOM collaboration is the emphasis on improving the quality of training and career development opportunities for minority scientists.

Scientific Contributions

In addition to the pilot studies outlined earlier, the MSPN project has resulted in several major scientific publications and presentations that have had national recognition. A prestigious chapter on cancer disparities13 in the Maryland Comprehensive Cancer Control Plan14 and a presentation at the Governor's Conference on Cancer Disparities in Maryland15 discussed data compiled and analyzed during the MSPN needs identification process. The chapter and the State's Cancer Control Plan as a whole are being used by NCI and the Centers for Disease Control and Prevention as a national model for states to develop their cancer control plans. Baquet et al.12 proposed a model to document disparities, design and conduct health disparities research, and apply research results toward the reduction or elimination of disparities. Dr. Baquet et al.16 also documented disparities between blacks and whites in esophageal cancer incidence, mortality, and survival and support the need for advances in prevention, early detection biomarker research, and research on new, more effective treatment modalities for this disease. In addition, Baquet et al.17 have documented the prevalence and predictors of recruitment to and participation in clinical trials in Maryland. These findings are applicable for the development of targeted and tailored clinical trial education programs.

Resources Leveraged for Sustainability

MSPN's community-based partnerships, infrastructure, and programmatic initiatives have provided the basis to leverage additional resources from federal and private sources to sustain and expand existing MSPN infrastructure and programs. These resources have, in general, facilitated the expansion of the MSPN infrastructure to cover jurisdictions in the state not currently supported by the MSPN, supported health and cancer disparities research and training, promoted education and recruitment to clinical trials, promoted community-based outreach efforts, and promoted the implementation of beneficial, evidence-based education interventions to re duce cancer risk factors and enhance cancer screening and early detection practices. MSPN has been leveraged for ∼$9 million per year from other federal and private sources to achieve its mission and to sustain and expand its programs.

 Award-winning programs have supported the establishment of a statewide telehealth/videoconferencing network, which provides 26 linkages across the state to facilitate continuing medical education and clinical education, clinical consultation, staff education, and tumor boards. The programs have supported the development of a Health Care Information Portal, a web-based tool designed to provide tailored health information to consumers and health care providers and to conduct web-based research studies.

Promotion of Sustainability

Reduction and eventual elimination of cancer health disparities among MSPN's priority populations will require a sustained effort to create and/or maintain the climate for overall change and effective partnerships, programs, and policies. MSPN has created this climate (or process) for social change through mechanisms that promote program sustainability, including the development of collaborative partnerships and the fostering of community/academic partnerships, shared empowerment, and collaborative environment between all partners in terms of development of needs, strategic planning, and determination of strengths and available resources. Additionally, implementation of community-driven and -implemented outreach and education programs focused on individual-level behavior change in population-level cancer health outcomes and promotion of cultural competence about Maryland's minorities and rural and urban underserved populations facilitates increased awareness among health care providers, policymakers, and funding agencies about the existence of cancer health disparities among Maryland's minorities and rural/urban underserved populations. MSPN's successful fostering of minority faculty as researchers in the field of cancer health disparities and the development of research programs with a special emphasis on disparity research promote application of innovative technological solutions for intervention in rural settings. In short, MSPN's comprehensive infrastructure promotes sustained leveraging of resources from federal and private sources and positively influences policy formulation through evidence-guided informed advocacy.

DISCUSSION

  1. Top of page
  2. Abstract
  3. Background
  4. MATERIALS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. Acknowledgements
  8. REFERENCES

MSPN has developed a statewide community-based infrastructure to address the cancer health disparities education, training, and research needs of priority populations residing in rural and urban areas of the state. It has developed a climate for social change to ensure sustained reinforcement and expansions of its effective programmatic initiatives. MSPN's success is attributable to the shared vision and commitment of its academic and community partners toward the elimination of cancer health disparities in the state, guided by a conceptual framework that emphasizes mutually interactive and iterative processes linking the infrastructure with the programmatic initiatives in education, research, and training.

 MSPN's educational programs to promote increased knowledge, positive attitudinal changes, and health-promoting behaviors were multifaceted and used multimethod community-based dissemination and communication strategies. Key elements for all education activities included 1) a clear definition of needs; 2) culturally sensitive and health-literacy-appropriate information materials to address needs; 3) specific, measurable short-term objectives; 4) use of community-accepted modes of communication; 5) assessment of available community resources; 6) development of local and regional partnerships; and 7) a long-term investment in the infrastructure. The US DHHS-designated Best Practice Award is an ideal example of an effective education program to change knowledge, attitudes, and practices. Strategically important components of this award-winning program included 1) a formal partnership between the community partner (Eastern Shore Oncology, PC, of Shore Health System's Regional Cancer Center on Maryland's rural Eastern Shore) and the academic partner (UMSOM); 2) clearly defined roles and responsibilities of the community and academic partners; 3) strong leadership by a local community physician; 4) shared benefits and commitment to the partnership between the community and academic partners; 5) leveraged support for human resources (e.g., nurse community educator and nurse data manager); 6) investment in clinical trial infrastructure for data management, safety monitoring, and protocol adherence; 7) community education through faith-based organizations, community settings, health fairs, and organized special events for men and women; and 8) provider education through continuing medical education, tumor boards, and conferences. The clinical trials educational program increased the availability of clinical trials 10-fold from 1999 to 2004 and, during the same period, increased the cumulative number of patients enrolled 30-fold.11

 MSPN's cancer disparities research program comprises 4 components: surveillance, explanatory, intervention, and translation/application research. The key elements of the program are 1) emphasis on academic–community collaborative participatory research principles in the definition of the research topics; 2) capacity enhancement, empowerment, and colearning for the community and academic partners; 3) formal mentoring of junior investigators and community partners; 4) clear definition of the roles and responsibilities of the community and academic partners; 5) collaborative development and implementation of research protocols; 6) joint decision-making; 7) establishment of trust and agreed-upon common actions; and 8) dissemination of findings to both community and scientific audiences. A collaborative pilot research project between a community partner (Ms. Bramble) and an academic partner (Dr. Mishra) typifies the collaborative research model implemented through MSPN. Ms. Bramble, through her community outreach and education efforts and interactions with stakeholders, identified the need for increasing consumer participation in colorectal cancer screening and to devise appropriate strategies and methods for communicating colorectal cancer prevention and early detection education. The study designed used both qualitative (focus groups) and quantitative (telephone survey) methods. The pilot project provides Ms. Bramble with unique survey methodology and data collection experience and skills, opportunities for data interpretation and dissemination, and the ability to develop education intervention strategies that are endorsed by the targeted community. The collaborative model of research establishes trust between communities and researchers; improves the quality and validity of research by engaging local knowledge; and enhances the relevance of the research question, the quality and quantity of data gathered, and the relevance and use of the data. The process joins partners with diverse skills, knowledge, expertise, and sensitivities to address socially and medically relevant issues.

 MSPN developed and institutionalized a viable minority faculty cancer research career development program for researchers through collaboration at both UMES and UMSOM, and between UMSOM researchers and community partners. The program emphasizes improvement in the quality of training and career development opportunities for minority scientists. Key elements of the training program are 1) formal and informal mentoring of faculty, students, and community partners; 2) a cancer research infrastructure; and 3) interinstitution collaborative initiatives. A pilot study funded through the NCI's SPN initiative provides an example of the key elements of the MSPN career development program. The project is a collaborative effort between Dr. Mai (UMSOM) and Ms. McCrary (UMES), an African American lecturer in the Department of Natural Sciences, and is characterized by Ms. McCrary's travel during the summer months to the Baltimore metropolitan area to conduct biomedical research protocols at Dr. Mai's laboratory. Ms. McCrary is provided an opportunity to work closely with laboratory technicians and postdoctoral fellows and gain hands-on training and experience in equipment operation and maintenance, research techniques, data collection, and preparation of research data, as well as attend frequently held seminars, lectures, and journal club and laboratory meetings on the UMSOM campus. These activities provide Ms. McCrary an environment that is conducive to critical and analytical thought and broaden her research experiences, making her better prepared to develop an independent research program on the UMES campus.

Conclusions

The legacy of MSPN can be sought in the synergy created through equal partnerships between its academic and community collaborators. These partnerships are based on a shared commitment and vision for social change, mutual respect, trust, agreed-upon common actions, proactive community participation, and the identification and reconciliation of self- and mutual interests. MSPN has evolved into a comprehensive, community-based and -driven network. Its innovative cancer health disparities research, training, and education programs, coupled with policy initiatives, serve as a model for a sustainable network to address the national priority of reducing and eventually eliminating cancer health disparities.

Acknowledgements

  1. Top of page
  2. Abstract
  3. Background
  4. MATERIALS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. Acknowledgements
  8. REFERENCES

We acknowledge the invaluable contributions of Ms. Patricia Commiskey, MA, toward the preparation of this manuscript

REFERENCES

  1. Top of page
  2. Abstract
  3. Background
  4. MATERIALS AND METHODS
  5. RESULTS
  6. DISCUSSION
  7. Acknowledgements
  8. REFERENCES
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