Methods
A regional GMaP/BMaP teleconference hosted by CRCHD in Spring 2009 initiated discussions between investigators in Region 3. Universities and cancer centers in Region 3 already had significant infrastructure to contribute to a regional network. Most of the institutions had CRCHD funding at the time, and the nine partner institutions were identified: Winship Cancer Institute of Emory University, H. Lee Moffitt Cancer Center & Research Institute, Morehouse School of Medicine, Ponce School of Medicine, Tulane University, Tuskegee University, University of Alabama at Birmingham, University of Mississippi Medical Center, and Xavier University of Louisiana. The partner institutions included those with a demonstrated excellence in cancer [one NCI-designated cancer center; two NCI-designated comprehensive cancer centers; and two Commission on Cancer (CoC) accredited programs], and four minority-serving institutions. This make-up of the partner institutions was intended to provide a base of expertise in cancer health disparities from biobanking to clinical trials to community engagement. A subsequent series of regional teleconferences among institutional leaders at the nine institutions was held to determine how Region 3 would respond to the call for applications. An Administrative Core of the leaders at each institution was formed through these teleconferences. Senior leadership, such as cancer center directors, deans and/or Principal Investigators of center grants in health disparities, made up the Administrative Core. While the title of the leaders may have varied, the qualifier of the institutional leadership across the network was that they be the responsible contact for cancer health disparities research at their institutions. In addition to institutional leaders, the Administrative Core consisted of the core leaders who had a strong track record of professional experience in the area of their core and included investigators from both cancer centers and minority serving institutions. Institutional leaders also served as contacts to their institution in identifying investigators that would be core members. While the program strived to have at least one investigator from each institution in each core, it was recognized that the base of investigators at minority-serving institutions and teaching demands limited the number of investigators and their time commitment. Even though the number of investigators participating in Region 3 GMaP and BMaP was not equal between each institution, an Administrative Core made up of institutional leaders from every institution in the network served to balance participation by having representation from all partners in a core with the responsibility for network-level decision-making. Also, decisions on next steps of the network, the needs and assets assessment, implementation plan, and general formation of the network, were brought up in plenary sessions of retreats for transparency and participation across the network.
During a teleconference of the institutional leaders, it was decided by consensus that the University of Alabama at Birmingham (UAB) would submit the GMaP supplement on behalf of Region 3 due to extensive experience of the institution’s investigators in health disparities research. Moffitt Cancer Center (MCC) was selected by consensus to submit the BMaP supplement because of prior work in biospecimen donation and biobanking through its Total Cancer Care ® initiative and its establishment of the first cancer tissue biobank at a Hispanic-serving institution through collaboration with Ponce School of Medicine ( Author, et al., 2011e ). Each institution committed to provide to the Region 3 GMaP/BMaP network in-kind contributions which included financial assistance as well as the time and effort of the investigators. A quarterly expense template was created for institutions to document effort spent on the project. Such expenses include time spent on teleconferences, travel expenses for face to face meetings, and effort in completing necessary project tasks towards the deliverables.
Upon receipt of GMaP-3 and BMaP-3 supplementary funding, communication, planning, and developmental activities were managed through regularly scheduled teleconferences as well as two in-person retreats each year, which rotated among Region 3 institutions. Each retreat had specific tasks to accomplish, which led to the development of GMaP-3 and BMaP-3 Implementation Plans ( Table 1 ).
The organizational structure of Region 3 GMaP/BMaP network ( Figure 1 ) has been coordinated around ten cores. There are three joint Region 3 GMaP/BMaP cores (administrative; evaluation/needs assessment; communication and dissemination; Figure 1 ). The Administrative Core is led by the GMaP-3 and BMaP-3 Project Leaders who, together with the GMaP-3 and BMaP-3 Regional Coordinators at UAB and MCC, are responsible for day-to-day conduct of the programs. GMaP-3 and BMaP-3 Project Leaders and Regional Coordinators meet through monthly teleconferences as a Coordinating Committee for both initiatives. GMaP-3 has four cores (training; clinical trials; biomedical informatics; and advanced and emerging technologies), and BMaP-3 has three cores (ethical, legal, and policy; collection, processing, storage, and analysis of biospecimens; and community and sociocultural beliefs). Each core has a core leader/co-leaders and core members across the nine partnering institutions to aid collaboration. A description of each core is provided in Table 2 .
To develop a comprehensive strategy for building the Region 3 GMaP/BMaP network, an initial task was to assess regional strengths, weaknesses, capabilities, and resources at GMaP-3/BMaP-3 institutions. This was achieved through the development and implementation of the Comprehensive Assessment Tool (CAT) , described below. The first step in creating the CAT entailed a face-to-face retreat of institutional and core leaders focused on establishment of the vision and goals for the Region 3 GMaP/BMaP network. At this initial retreat in January 2010, each core met for the first time and developed goals for their specific group (see Figure 2 , step 1) that were consistent with the overall vision and goals of the network. The Evaluation/Needs Assessment Core developed a Needs/Assets Assessment Template to assist in designing questions for each core’s section of the needs assessment document. This template guided each core in developing measurable objectives for each goal, indicators of gaps and resources related to each of the objectives identified, and sources of data to evaluate objectives (See Figure 2 , step 2; Table 2 ). The Administrative Core and the Evaluation/Needs Assessment Core did not complete templates as their roles were related to oversight and support of the needs assessment.
By March 2010, each core completed the template whereby members of the Evaluation/Needs Assessment Core generated items to measure each of the objectives of interest to the different cores. Drafts of these items were sent to each core and refined in an iterative manner with the Evaluation/Needs Assessment Core until a finalized draft of items was established for each core ( Figure 2 , step 3). The overall development of the CAT represented an iterative (step-wise) and participatory process whereby each core developed questions and an accompanying glossary of key terms pertinent to content domains of their core ( Figure 1 ).
The Regional Coordinators combined the items and glossary terms into a first draft of the CAT for distribution to the Region 3 GMaP/BMaP investigators at the second face-to-face retreat (July 2010). During the second retreat, each network member was assigned a working group to review every item for one section of the CAT. In separate core sessions, members discussed feedback from the working groups that applied to their core’s section(s). In addition to providing feedback on the CAT, methods for collecting data were presented and finalized at the retreat. The MCC Survey Methods Core presented potential approaches for data collection, including paper (scannable) forms and web-based data entry. Following discussion of the advantages and disadvantages of each approach, it was decided the MCC Survey Methods Core (SMC) would develop a web-based data entry portal using Checkbox® 4.7 software.
After incorporating suggestions from the retreat, the final CAT included 181 closed and open-ended items and 32 tables divided into 12 sections (including Introduction & Instructions and the Glossary; Table 3 ). The revised CAT underwent a review by each core in August 2010 to address final conflicting recommendations ( Figure 2 , step 4). Steps three and four required multiple iterations of the CAT that were revised and reviewed by the cores, retreat attendees, and project leaders.
In summary, the step-wise/iterative and systematic process allowed broad goals set by each core to eventually be transformed into specific items making up the CAT instrument. These steps were also shaped by the principles of community-based participatory research. The completion of the needs/assets assessment template provided a “check” on whether a goal could be measured through an assessment tool and, overall, provided an organized manner for core leaders and members not necessarily experienced in evaluation to have a guide in developing their section. Steps 1–3 were accomplished through the participation of each core in the creation and approval of the items that would form a section of the CAT. In step 4, the CAT was reviewed by retreat attendees from the nine institutions. Subsequently, each core approved their section of the CAT.
By November 2010, the finalized paper-based CAT and corresponding data dictionary detailing over 1,000 response variables were sent to MCC Survey Methods Core (SMC) for conversion of the CAT to a web-based format using a site license for Checkbox® ( Figure 2 , step 5). A functional online test version of the CAT was quality checked before the online CAT was distributed to partner institutions. To check the quality of the CAT web survey, links to the CAT sections were sent to individuals at Moffitt and UAB familiar with health disparities. These individuals were asked to review each section and provide feedback on: (a) terms that may not be understandable or confusing; (b) questions that are not easily understood; (c) misleading or confusing items; and (d) any technical bugs. This final quality check allowed individuals who had not been involved in the CAT design to provide an “outsider” perspective. Having the quality check completed by individuals not familiar with the network was important because it was not expected that individuals completing the web survey would necessarily be the same personnel who had been involved in the development of the CAT as a Region 3 GMaP/BMaP core leader or member and thus would not be familiar with its purpose and content. The final version of the CAT instrument is available upon request.
Using the CAT matrix, each institutional leader was asked to identify an institutional captain who would take responsibility for distribution of the sections and ultimate completion of the CAT at each of the Region 3 institutions. Sections (eg, training) would then be assigned for completion to individuals at each institution who were most knowledgeable about a particular topic. Because each section of the CAT would be assigned to particular respondent(s) at an institution, the SMC staff created a section-specific login and password using the Checkbox® software. Each respondent was instructed to login and answer the questions in the CAT in reference to their institution, not from an individual perspective. The regional coordinators and institutional leaders were able to track the progress made on the completion of the CAT through email alerts when a section was submitted. Also, regional coordinators had the ability to log into a Checkbox ® portal in order to download responses to a particular section completed at an institution in real-time. All nine institutions uploaded CAT responses by February 2011 ( Figure 2 , step 6). CAT findings as they related to the original goals and objectives previously identified in the Needs/Assets Assessment Templates ( Figure 2 , step 7) were provided to Region 3 investigators at the February 2011 face-to-face retreat ( Figure 2 , step 8). During this retreat, each core reviewed and discussed their specific core’s data during break-out sessions, and subsequently discussed their interpretation of the data during a “report-out” meeting of the network investigators attending the retreat. In all, Figure 2 provides a systematic strategy for implementing a needs and assets assessment within a multi-institutional network that is geared towards addressing multiple specialized areas (by splitting them by core) and addressing needs, strengths, capacities and capabilities (by using a standard template and having the involvement of the Evaluation/Needs Assessment Core in the development of the assessment).
Results
The infrastructure of Region 3 GMaP/BMaP evolved over time through a series of discussions among investigators at each partnership institution. Partnership activities leading to the formation of the infrastructure for the network included (1) the initial establishment of the network partners and institutional leaders; and (2) the finalization of a core structure and goals at the first in-person retreat. As described in the Methods section, the initial communication of the network partners began with a teleconference hosted by CRCHD. Following this initial teleconference, a series of additional teleconferences between the institutional leadership led to aspects of the collaboration being defined (eg, which institutions would be lead sites for Region 3 GMaP and BMaP; which investigators at the institutions would serve as institutional leaders, core leaders, core members, etc). The first in-person retreat of the network brought together institutional and core leaders (ie, Administrative Core) and core members in solidifying the Region 3 infrastructure ( Figure 1 ), individual goals, and the needs and assets timeline and proposed template. A retreat format of breakout sessions by each core, followed by open discussion during a plenary session was established as a satisfactory and participatory manner of structuring the retreats. Equal participation across cores from all nine institutions was a challenge of the network, as cancer centers typically had a larger base of investigators to draw from in comparison to minority serving-institutions. This was addressed by ensuring that core leadership and membership still had a mix of investigators across institutions.
The principles of community-based participatory research guided the processes for the participatory design and completion of the needs and assets assessment and the Implementation Plan. Especially (a) identifying and building on strengths and resources within the network; (b) fostering collaborative, equitable involvement of all partners in all phases of the research; (c) disseminating findings to partners; and (d) long-term commitment by all partners ( Israel, et al., 1998 ). The assessment was designed to not only examine needs of the partner institutions but also the resources, capacities and capabilities so that ultimately the findings could inform how the network as a whole could strengthen areas of opportunity and address gaps. The process outlined in Figure 2 was participatory throughout, involving core leaders and members in the development and design of the needs and assets assessment. In step 1 core members defined goals the informed the needs/assets assessment templates (the outline of which had been presented by the evaluation/needs assessment core leaders during a plenary session of the first retreat). In step 2 a template was completed by each applicable core through core teleconferences of members across the region and the involvement of a member of the evaluation/needs assessment core for technical assistance. In step 3, each core reviewed and revised the tool that had been created by from their needs and assets template. At this point, each core had been working in isolation (other than the involvement of the evaluation/needs assessment core) on the CAT. Thus, the in-person retreat in July 2011 was implemented so that the entire CAT (all sections combined into one document) could be reviewed in plenary sessions and in breakout sessions (with breakout members across cores) to provide feedback for each core to consider about their section of the CAT (step 4). At this retreat, the decision on administering the CAT through an online instrument was also made during a plenary session (implemented in step 5). Each partner also had a participatory role in the administration of the CAT (step 6) where each institution had a “captain” who identified the most appropriate individual(s) to complete each section at their institution and also monitor its completion. Once the CAT was completed, findings were summarized and then presented at the Region 3 retreat where open discussion on the interpretation and implications of the findings took place (steps 7–8). The systematic and sequential process of the CAT development was replicated in the development of the Implementation Plans. Each core completed a template, thus involving investigators from every institution within the network. The project leaders and every core leader signed final Implementation Plans submitted to NCI to reflect the continued involvement of the network partners in every phase of the program. Further, the long-term commitment by all of the partner institutions cannot be underestimated. As described in Future Directions, the commitment continues through Region 3 GMaP and BMaP pilot studies.
Completion of the CAT resulted in several beneficial outcomes for Region 3 GMaP/BMaP. First, the resulting CAT data on strengths, weaknesses, capabilities, and resources provided cores with information to develop GMaP-3 and BMaP-3 Implementation Plans, which serve as a future roadmap for full-scale implementation of Region 3 GMaP/BMaP, including core services. The same methodology that had proven effective for designing the CAT was used and included the following steps: (1) designing templates; (2) having each core complete a template corresponding to their section of the plan; and (3) incorporating these templates into Implementation Plans that were further revised as a whole. The Region 3 GMaP/BMaP Implementation Plans were completed and delivered to NCI in December 2011 to inform future funding opportunities. Second, completion of the CAT served to further solidify network infrastructure as core leaders, core members, and institutional leaders participated in development of the CAT. CAT development and completion tested the feasibility of the Region 3 GMaP/BMaP network to accomplish a standardized multi-site endeavor. Third, analysis of CAT data provided the basis for planning GMaP-3 and BMaP-3 pilot projects, which are being implemented as part of the second phase of GMaP/BMaP funding (described below). It is beyond the intent or scope of this paper to present the CAT data, however, in Table 4 we highlight a few pertinent findings as examples to illustrate for the reader the richness of data obtained in a participatory manner.
Discussion
In 2009, a regional inter-institutional network was established to address cancer disparities in the Southeastern United States. Over the past four years, the nine institutions that comprise Region 3 have worked toward that goal. While previous inter-institutional partnerships focused on reducing cancer disparities, ( Carey, et al., 2005 ; Author, et al. 2011e ; Goldmon, et al., 2008 ; Author, et al., 2011a ; Author, et al., 2005 ; Wynn, et al., 2011 ) to date there have not been any published articles describing the development of a partnership as large as the Region 3 GMaP/BMaP network that specifically centered on health disparities and biobanking/biospecimen collection.
During the development of the Region 3 network several lessons were learned. First, establishing the Region 3 GMaP/BMaP network required significant participation and commitment of each of the nine institutions and nine institutional leaders involved. From the beginning of Region 3 GMaP/BMaP, the investigators at the partner institutions were engaged as key stakeholders in the infrastructure building and needs/assets assessment process. Using a core structure, each institutional leader played an important role in identification of core leaders and core members from their institution (totaling approximately 100 investigators), development of the needs and assets assessment, evaluation of the needs and assets assessment data, and development of the implementation plan. The importance of having each core composed of members across the partner institutions is critical in maintaining the participatory aspect, continued momentum, and engagement of this multi-institutional initiative. At each juncture, the project leaders sought the equitable participation across institutions, especially a balance across the types of institutions represented in teleconferences, and to have retreats attended by investigators representing all network institutions. While needs, strengths, capabilities and capacities vary between institutions in the network, they complement a common goal to ultimately create a state-of-the-art network for cancer health disparities research, training and care. This common link focused on cancer health disparities created a bond between the institutions largely responsible for the momentum and engagement. It is also important to stress the strategy of viewing the network of approximately 100 investigators as a unit of identity, and from the perspective of the project leaders and institutional leaders, as a group whose engagement and perspective must be considered in the decision-making and communication of the network.
Second, the process of decision-making in the network was instrumental to development of the Region 3 GMaP/BMaP network. In general, decision-making has been implemented through a group consensus approach. Issues pertaining to the needs and assets assessment, implementation plan, and general formation of the network were discussed at in-person retreats that rotated through different Region 3 institutions. Having institutional leaders provide input into decisions has been central in developing the Region 3 GMaP/BMaP network. Decision-making was also carried out, especially at retreats, in an atmosphere of equity. This was agreed upon in the first retreat. Also, having all core minutes and materials equally available and having cores report on their activities through Administrative Core teleconferences and at retreats kept a transparent environment to the conduct of the program. Decision-making during the scope of the program described in this paper was not governed by an agreement, although specific research pilot activities in September 2011 and forward did involve the development of a charter, memoranda of understanding, and a collaboration agreement. A specific example of the decision-making process within the region was the consideration of implementing a Region 3 Consortium Institutional Review Board (IRB). The BMaP-3 Ethical, Legal & Policy Core had assessed the willingness for institutions to participate in a Region 3 Consortium IRB. During the third retreat, the results were reported for the CAT, including that a majority (n=7) of the institutions were willing to consider this idea. During the Ethical, Legal & Policy Core session the possibility of proposing the implementation of a Consortium IRB was discussed among the multi-institutional Core membership. After weighing the advantages and disadvantages, the Core proposed during their report-out in the plenary session to not pursue the idea given the challenges in implementation. This was agreed by all the members during discussion. This approach of having cores with the respective expertise weigh decisions served as a transparent and participatory approach to handling decision-making within the network. Another example of decision-making in the network which demonstrated the flexibility of the network was the decisions made to restructure the organizational structure of the network. At one of the first regional retreats, it had been proposed to merge the Communication & Dissemination Cores. During plenary session of the retreat this was brought for a vote to the participants and the decision was finalized to combine both cores as a merged GMaP-3/BMaP-3 Communication/Dissemination Core as both had overlapping roles and goals and members. The organizational structure was revisited again in merging the Advanced/Emerging Technologies Core with the Biomedical Informatics Core.
Third, effective coordination and communication between the geographically diverse institutions and institutional leaders have been instrumental in creating the network. Using the core structure, GMaP/BMaP Region 3 network information has been communicated back and forth between cores and project leaders via multiple modes of communication. These modes of communication specifically were (a) teleconferences for core meetings needed to accomplish tasks between in-person retreats, (b) a SharePoint website for access to program documents, (c) email for day-to-day communication and monthly email blasts to 100 investigators and leaders which detail network announcements such as funding opportunities and conferences in health disparities/team science (investigators are invited to contribute to email blasts), and (d) in-person meetings to provide for networking between investigators across the region, regional decision-making and provide the momentum to move the program from one phase to the next. Each in-person retreat was structured to meet specific goals of communicating results of previous efforts, obtaining participant feedback, and establishing objectives for future activities. Two regional coordinators provide support in these efforts.
In terms of the needs and assets assessment process, there are lessons learned from the evaluation practice perspective as well. A participatory process is productive only to the point to which it (a) is initiated from inception of planning; (b) allows for sufficient time for interactions between participants; and (c) is held in an atmosphere of “mutual respect and trust” ( Green & Kreuter, 2005 ). Interactions between network institutions began from time of the funding announcement, resulting in a mutual decision on lead institutions that would be funded for GMaP-3 (UAB) and BMaP-3 (MCC). We have found that a truly participatory approach requires significant time from all network partners from the design of the CAT instrument to data collection and interpretation of results. Time, respect, and effective communication were essential components of this transdisciplinary evaluation process, meaning that no method in the evaluation was taken for granted as common knowledge .
As Green and Kreuter (2005) state, while generalizability and external validity are standards for judging sound science, it is recognized that program planning research yields no results that can be concluded for a larger population, but a generalizable “process for planning.” Thus, results from the CAT assessment are not necessarily generalizable outside of the nine institution network. Yet, results were, and continue to be, informative for internal network development. Also, the needs/assets assessment was not triangulated with other methods or sources. In part, this was due to funding constraints as other methods for verifying/corroborating responses (such as a document review or site visit) were beyond the resources for Region 3 GMaP/BMaP. In summary, the participatory design and intent of the CAT allowed identification of future areas of synergy and collaboration, guided decision-making on cancer health disparities research priorities, and fueled ideas to create a regional biobanking network.
Future steps for the Region 3 GMaP/BMaP network include development of investigator-initiated cross-institutional team science research studies and training programs to address gaps identified in Region 3. In addition, the Region 3 BMaP network began a biospecimen pilot project in Fiscal Year 2011, as a proof-of-principle for collaborative minority biospecimen/biobanking in Region 3. This pilot involves the retrospective collection of formalin-fixed paraffin embedded breast cancer tissues from Caucasian, African American, and Hispanic/Latino patients and associated de-identified data from multiple institutions for the construction of a tissue microarray (TMA) that can be used by researchers in the network for collaborative projects. To date, samples from 259 African American and Caucasian patients have been retrieved from four institutions and used to create a TMA governed by the Region 3 BMaP Tissue Advisory Board which has one voting member per institution. Two collaborative (multi-institutional) developmental pilots (projects must have PI’s from two Region 3 institutions) were reviewed, approved by the TAB, funded through Region 3 BMaP and are currently utilizing slides from the TMA. Furthermore, a Region 3 statistical training workshop on the analysis of TMA’s was recently held. These initial regional efforts demonstrate strong collaborations across institutions and lend high support for achieving initial network outcomes. Future efforts will be made to increase participation in the network by community members served by the institutions participating in the Region 3 GMaP/BMaP network, and to work towards the inclusion of additional institutions within the network. While we hope the network will reduce cancer health disparities, we currently do not have data to indicate whether this has happened or not. However, our efforts to date suggest that our original goal of forming a supportive and enriching network that would produce engaging and productive collaborations (development of CAT, interactions, pilot projects, etc) suggest much promise for future and sustained collaborations. Future efforts will be made to increase participation in the network by community members served by the institutions participating in Region 3 GMaP/BMaP network and to work towards the inclusion of additional institutions within the network.
Conclusions
The Region 3 GMaP/BMaP network entails ongoing commitment from the institutions and institutional leaders, continuous participatory and engagement activities, and effective coordination and communication centered on team science goals. While the ultimate goal is the establishment of infrastructure, the work in this paper represents the first three years where the foundation for the network is established. With continued support, interest, and commitment, this network will continue to seek to refine a state-of-the-art network for cancer health disparities research and training.
Introduction
Significant cancer health disparities exist in the Southeast region of the United States, which includes Alabama, Florida, Georgia, Louisiana, Mississippi, and Puerto Rico ( Departamento de Salud, 2007 ; U.S. Cancer Statistics Working Group, 2010 ). The two racial/ethnic minority populations most affected by cancer health disparities in this region are African Americans and Hispanics ( U.S. Cancer Statistics Working Group, 2010 ). A recent report from the American Cancer Society found that more Hispanics in the United States die of cancer each year than any other cause ( American Cancer Society, 2012 ). Factors contributing to cancer health disparities in this region include a high proportion of individuals without health insurance, high poverty rates, large rural areas with limited access to quality cancer care, and communication and health literacy barriers ( Author, et al., 2010a ; Author, et al., 2011a ; Haynes & Smedley, 1999 ; Author, et al., 2012a ; Jacobs, Karavolos, Rathouz, Ferris, & Powell, 2005 ; Kaiser Family Foundation, 2009 ; Author, et al., 2005 ; Ryan & Siebens, 2012 ; Shin & Kominski, 2010 ).
Numerous initiatives in the Southeastern United States are underway to reduce cancer disparities and train future researchers from underrepresented groups, ( Author, et al., 2011a ; Author, et al., 2010b ; Author, et al., 2005 ; Satcher, et al., 2006 ; Author, et al., 2009 ; Author, et al., 2011b ; Author, et al., 2011c ; Author, et al., 2012b ; Author, et al., 2012c ; Author et al., 2012d ; Wynn, et al., 2011 ; Author, et al., 2006a ) but with minimal regional collaborations or coordination. Strengthening cancer research across the continuum from basic science to population-based studies is critical to the advancement of cancer health disparities research. As such, a number of inter-institutional networks have been established to reduce cancer health disparities, including Community Network Program Centers (CNPCs). For instance, the Deep South Network, ( Author, et al., 2006b ; Author, et al., 2005 ; Wynn, et al., 2011 ) the Tampa Bay Community Cancer Network ( Author, et al., 2011d ), and the National Black Leadership Initiative on Cancer II: Network Project ( Satcher, et al., 2006 ) are all inter-institutional networks. In addition to CNPCs, partnerships between minority institutions and cancer centers through the Partnerships to Advance Cancer Health Equity (PACHE) have a direct focus on cancer health disparities at an inter-institutional level ( National Cancer Institute, 2012 ).
Population-based molecular studies are important to cancer health disparities research, and team science is vital to address these disparities. Moreover, development of biobanks is also essential for effective translational research by allowing researchers to uncover genetic causes of complex diseases and subsequently develop new therapies and prevention strategies ( Author, et al. 2011e ; Khoury, Millikan, Little, & Gwinn, 2004 ; Morente, Fernandez, & de Atava, 2008 ). By obtaining diverse samples (eg, disease status, racial/ethnic composition), biobanks may serve as key resources to address the issue of limited generalizability that plagues much of the current clinical and genomics research, and allow for powerful interpretation of differences between diverse racial/ethnic groups and their association with disease processes. Partnerships with minority-serving institutions may help to identify and overcome barriers to research, establish biobanking models unique from those at comprehensive cancer centers, and create opportunities for research, training and outreach ( Author, et al., 2011e ).
In an effort to better coordinate cancer disparities activities, the National Cancer Institute’s (NCI’s) Center to Reduce Cancer Health Disparities (CRCHD) issued a call through American Recovery and Reinvestment Act (ARRA) supplementary funding for regional transdisciplinary networks through the Geographic Management Program (GMaP) and the Minority Biospecimen/Biobanking - Geographic Management Program (BMaP). The purpose of GMaP/BMaP was to establish multi-institutional networks to develop infrastructure for research and training for the purpose of reducing cancer related health disparities. Specifically, for BMaP, development of a state-of-the-art network lays the needed foundation and infrastructure for ensuring the adequate and continuous supply of high-quality human biospecimens (neoplastic and nonneoplastic tissues) for cancer research that takes into account “cultural sensitivities of diverse communities” in the region ( National Cancer Institute, 2009 ). This paper details efforts toward the development of the Region 3 GMaP/BMaP network composed of over 100 investigators from nine institutions in five Southeastern states (Florida, Georgia, Alabama, Mississippi, Louisiana) and Puerto Rico who have assiduously worked to develop a regional plan for tackling cancer health disparities.
Our goals in this paper are to: (1) describe a series of partnership activities leading to the formation of infrastructure for Region 3 GMaP/BMaP network, (2) recount the participatory processes used to develop and implement a Region 3 needs and assets assessment to inform a comprehensive regional implementation plan, and (3) report lessons learned. We detail the application of the principles of community-based participatory research to the implementation of the network and the assessment. The blueprint of ideas outlined in this paper may be useful for other institutions and researchers who seek to create regional plans for impacting health disparities.
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