Table of Contents
Office of Minority Health/Office of Public Health and Science,
U.S. Department of Health and Human Services
Office of Public Health Research, Office of the Chief Science
Officer, Centers for Disease Control and Prevention,
U.S. Department of Health and Human Services
DECEMBER 5 - 6, 2006
CDC GLOBAL COMMUNICATIONS CENTER
On May 24, 2006, the Centers for Disease Control and Prevention (CDC), Office of the Chief Science Officer, Office of Public Health Research (OPHR) in collaboration with the U.S. Department of Health and Human Services (HHS), Office of Public Health Science, and Office of Minority Health (OMH), held the first Federal Partners Meeting on Collaborative Research Efforts to Eliminate Health Disparities in Washington, DC. CDC initiated this one-day meeting in promotion of Advancing the Nation's Health: A Guide to Public Health Research Needs , 2006-2015. This comprehensive resource for public health research was developed during 2005 and 2006. After identifying 165 potential areas for research, participants focused on 23 areas for research opportunities, including four top priority areas they felt were promising for multi-agency collaboration: obesity, built environment, mental health care and co-morbidities. It was also decided that the proposed subject matter experts and agency points of contact for the 23 areas would be invited to participate in a future meeting to further develop strategies for collaboration and research topics. This second meeting, held in Atlanta on December 5-6, 2006, represented that next step.
The December 5-6, 2006 meeting was co-hosted by the CDC, OPHR and HHS, OMH. The participants included 96 subject matter experts representing nine HHS agencies and five other federal departments and independent agencies. The overall purpose of the meeting was to facilitate a meaningful discussion among participants, review recommendations that emerged from the first Federal Partners Meeting in May 2006, refine the four top priority areas that were identified in the first meeting and recommend strategies for sustaining the collaboration.
Over the course of the two-day meeting, workgroup participants engaged in collegial and insightful discussions to refine the top research priority areas and questions, explore support, advocacy and funding strategies, and share ideas for short-term and long-term sustainability of collaborative efforts. This included reviewing and modifying draft starter descriptions developed by OPHR with assistance from the Collaborative Planning Workgroup (CPW) that was formed with agency representatives following the first Federal Partners Meeting.
During the meeting, participants worked in four breakout teams based on results from the May meeting. Each team covered one of the four issues.
- Obesity: Develop a systems approach for addressing obesity
- Mental healthcare: Investigate effective strategies to increase access to culturally appropriate services and supports for mental healthcare in culturally, racially, and ethnically diverse populations
- Co-morbidities: Develop quality indicators for persons with multiple chronic health conditions and for managing co-morbidities
- Built environment: Examine the relationship between the built environment and health of vulnerable populations
Each team progressed through three breakout sessions with specific tasks: identifying one to three research priorities, developing starter research descriptions, and developing a starter plan for funding and implementing the collaborative research.
Following each breakout session, the teams reassembled, reviewed results, and received input from the other teams. Table A provides a preliminary summary of critical themes identified by each topic area workgroup.
Speakers and Panelists
To provide additional input to the teams, speakers and panel discussions were interspersed throughout the two days. Key input included an overview of linkages with other HHS health disparities initiatives, an emphasis on the importance of moving from research to practice, discussion of current efforts and the benefits afforded by collaboration in today's environment, and helpful advice on successful collaboration that included an articulation of seven essential ingredients of successful collaboration:
- Build sustainability
- Understand the mission of partners
- Define expectations and roles
- Bring something to the table
- Always remember the beneficiaries
- Define what we are doing well and not well
- Look at what we are not doing
The Accelerating Collaboration on Health Disparities Research meeting proved successful, resulting in the following outcomes:
- Participants refined research questions that would be addressed for each priority area (See Table A), drafted initial research descriptions for each priority area, and proposed strategies for funding and sustainability of the collaborative efforts.
- Participants determined that the most important immediate next step was to develop an infrastructure for the collaborative effort, which they identified as a key component for sustainability of the program for all priority areas. It was agreed that the refinement and implementation of an infrastructure for the top four priority topics should precede adding additional priorities; although, it was clearly acknowledged that these four research areas do not represent a comprehensive list of areas that would benefit from further research through interagency collaboration.
Participants agreed that the involvements and relationships of OMH, HHS Health Disparities Council, and other existing interagency collaborations need to be further developed.
Participants also provided the following additional recommendations:
- Share meeting summary and outcomes with participating agencies, as soon as possible
- Identify a person at each agency/department represented at the meeting who would agree to meet each month
- Define how the mechanisms for working across agencies would be developed (e.g., work plans on how funding is distributed, avoiding competing among programs)
- Hold a follow-up meeting
- Have dedicated staff whose primary responsibility is the collaborative effort and ensures agency support and representation on teleconferences as well as throughout the effort
- Establish a list serve
- Invite others, including federal and non-federal agencies and organizations to join this collaborative effort
The original collaborative planning workgroup responsible for planning this meeting will continue to examine proposed infrastructure and implementation plans. This will include recommending a champion/advocate for the initiative and a steering committee. In addition, we anticipate holding a follow-up conference call with the CPW in January, 2007. An invitation asking agencies not currently represented on the CPW will go out shortly. A post-meeting survey will be sent to all participants to invite specific feedback regarding other top priority areas which should be added, once the infrastructure is firmly in place and a system for implementation has been more clearly established.
The final meeting report will contain specific recommendations for each workgroup research topic area and shared with all participants of the May and December meetings.
Table A: Critical Themes for the Development of Research Questions
|Mental healthcare : Investigate effective strategies to increase access to culturally appropriate services and supports for mental healthcare in culturally, racially, and ethnically diverse populations|
|Co-morbidities: Develop quality indicators for persons with multiple chronic health conditions and for managing co-morbidities|
|Obesity: Develop a systems approach for addressing obesity|
|Built environment: Examine the relationship between the built environment and health of vulnerable populations|
Meeting Report - Day 1
Meeting Objectives and Outcomes
The objectives of the meeting were to:
- bring together subject matter experts to review recommendations that emerged from the first Federal Partners Meeting held on May 24, 2006
- expand the top four priorities from the May 24 meeting to include a focus on identification, translation, and dissemination of population-based research and interventions
- gain consensus on the most promising areas in health disparities research
- consider potential opportunities and steps needed to create joint funding opportunity announcements in these four areas (obesity, co-morbidities, mental healthcare, and built environment)
The meeting participants were presented feedback and lessons learned by various leaders from several federal agencies who have had notable success with collaborative efforts. A central theme was sustainability and its critical importance in the success of any collaboration. The participants were therefore charged with developing strategies which would foster long-term sustainability for research initiatives being planned.
Subject matter experts assembled for this meeting included representatives from six United States Federal Departments, including the agencies and offices listed below. A comprehensive list of meeting participants is included in Appendix A-2.
- United States Department of Heath and Human Services
- Office of the Secretary
- Office of Public Health and Science
- Office of Minority Health
- Office of Women's Health
- Office for Civil Rights
- Office of Public Health and Science
- HHS Agencies
- Agency for Healthcare Research and Quality
- Agency for Toxic Substances and Disease Registry
- Centers for Disease Control and Prevention
- Centers for Medicare and Medicaid Services
- Health Resources and Services Administration
- Indian Health Service
- National Institutes of Health
- Substance Abuse and Mental Health Services Administration
- Office of the Secretary
- United States Department of Agriculture
- Cooperative State Research, Education and Extension Service
- Agricultural Research Service
- United States Department of Housing and Urban Development
- United States Department of Justice
- National Institute of Justice
- National Institute of Corrections
- Juvenile Justice and Delinquency Prevention
- United States Department of Education
- National Research Institute on Disability and Rehabilitation Research
- United States Department of Veterans Affairs
Dr. Robert Spengler, Director, Office of Public Health Research (OPHR), Office of Chief Science Officer (OSCO), Centers for Disease Control and Prevention (CDC)
Dr. Spengler began by welcoming participants and thanking them for being present to continue the work started at the Federal Partners Meeting in May of 2006. He briefly reviewed the background on the federal effort to facilitate interagency collaboration to address the important issue of health disparities and accomplishments of the first meeting. He also expressed hopeful confidence that this meeting would prove to be equally productive in advancing that initiative.
Dr. Spengler then introduced Dr. Walter Williams, who spoke about the importance of collaboration on health disparities research.
Dr. Walter W. Williams, Director, Office of Minority Health and Health Disparities, Office of Strategy and Innovation, CDC
Dr. Williams opened by discussing the "Power of Collaboration," and describing several models of collaboration that have proven successful in medicine and public health. These collaborative models focused on improving access to health care for the un- and under-insured, improving the quality and cost-effectiveness of health care, strengthening health promotion through community campaigns, and collaborating on policy, training and research to shape the future direction of the health system. He noted that our efforts to expand federal collaboration on research can have a tremendous payoff downstream. Dr. Williams shared numerous examples of collaborative efforts between CDC and other federal agencies. He highlighted many of the key benefits of such efforts, including elevation of the quality of health research based upon the leveraging of expertise, resources and reach, and reduction in duplication.
The Department of Health and Human Services ( HHS ) has begun an ambitious planning activity towards the goal of ending health disparities. More details on these efforts, including the release of an agenda document, will be forthcoming in the near future. He explained that the five areas of focus for the action agenda will be:
- Increasing awareness of health disparities
- Strengthening leadership for addressing health disparities
- Improving patient-provider interaction
- Improving cultural and linguistic competency
- Improving coordination and utilization of research and outcome evaluations
He further explained that this meeting directly addresses objectives one, two, and five and that by their participation, the subject matter experts in attendance are already significantly contributing to the advancement of this agenda.
Dr. Williams gave a quick overview of the nine components of Advancing The Nation's Health: A Guide To Public Health Research Needs, 2006-2015 (Research Guide) and referred to particular sections which laid the framework for the meeting, particularly the section on Social Determinants of Health and Health Disparities. He then offered a few words about the meeting held in May, including the purpose of that meeting and accomplishments to date. At that meeting, over 70 representatives were present among 11 departments and 22 agencies. Identification of the top four priority areas, generation of the list of subject matter experts needed to create a strategic plan, and the fact that this follow up meeting is taking place are all representative of the substantial progress achieved as a result of that meeting. He described the process by which the initial list of 165 potential research areas was narrowed down to four top tier areas which would be the focus of this meeting:
- Systems-wide approach to obesity
- Quality indicators for people with co-morbidities
- Increasing culturally appropriate access to mental healthcare
- Built environment and vulnerable populations
An Interagency Collaborative Planning Workgroup (CPW) was established to provide guidance for plans for this meeting. He noted the expectation is that this meeting will bring us closer to the objective of enhancing collaboration. He provided a link for the Research Guide and CDC's Health Protection Goals.
His concluding remarks again welcomed and thanked everyone for their participation. He expressed hope that this two-day program would be productive in furthering the collaborative initiative.
Dr. John Ruffin, Director, National Center on Minority Health and Health Disparities (NCMHD), National Institutes of Health (NIH)
Dr. Ruffin began his remarks by expressing gratitude and delight at being invited to speak. He briefly recounted the various name changes that the NCMHD has undergone during his tenure at NIH and how those name changes reflected an evolution to more progressive thinking on the issue of health disparities, especially the cultural change from the objective of reducing health disparities to eliminating them altogether. He feels that it is fitting that HHS leads the effort in collaboration with others. The NCMHD has always recognized the critical importance of collaboration, an important element if the objective of eliminating health disparities is to be accomplished, because it was founded through collaboration. Establishing partnerships both internally in NIH and with outside groups was a requirement in order to achieve their goals. Through partnerships, they initially funded approximately 100 projects which have grown to more than 300 partnership projects since NCMHD's creation in 2001.
He described the development of some key partnership programs that they funded including the REACH 2010 program with CDC, the EXCEED Program with Agency for Healthcare Research and Quality (AHRQ), a K-12 Science Education program with the National Science Foundation, and the Jackson Heart Study with the National Heart, Lung, and Blood Institute (NHLBI) at NIH, just to name a few.
Dr. Ruffin strongly encouraged participants to carefully review NIH's Health Disparities Strategic Plan to gain a sense of the vast opportunities for partnership with NIH to address health disparities, noting that it is not to be mistaken as a plan for the NCMHD. Rather, the strategic plan outlines what each institute and center within NIH is planning related to health disparity and reveals where other agencies can participate. He expressed hope that this meeting will produce a dialog regarding lessons learned from partnership and foster new opportunities for partnering with other agencies.
Based on his own experiences, Dr. Ruffin concluded by offering participants the following words of advice along with questions to consider as they embark on developing the strategic plan for collaboration:
- Each agency has a specific mission. Consider each agency's mission and build on each one's mission and strengths. Be careful to work within those factors and do not expect an agency to pull away from its mission.
- The responsibility of each party must be clearly defined. Carefully consider what is expected from each partner. Be sure to clearly define the roles.
- Partnerships involve a long-term process. Be prepared to stay in for the long haul. We must dig in our heels because it will take some time to get where we need to go.
- Remember that partnerships should not be just about money. However, financial input does play an important part because it speaks to the commitment. Each partner must bring something to the table. It could be an innovative idea about how to proceed. You may have the equipment or technical support, etc. But, if you are not bringing money, you must bring something.
- Remember that the community is the beneficiary of the work. Consider: "Who are we trying to serve?"
- Consider ways to improve efforts to eliminate health disparities, not just "polishing the diamond." How can we improve it? Consider what is working well and what is not working well. Sometimes there is potential for improvement if we bring in different partners. Different results can only be accomplished by trying something different.
- When putting together successful programs, be sure to work just as hard to make sure that they are sustained.
Meeting Overview and Charge to Participants
Mr. Michael Wilkinson, Meeting Facilitator, CEO , Leadership Strategies, Inc.
Mr. Wilkinson joined Dr. Spengler in thanking Dr. Williams and Dr. Ruffin for their insightful comments. He then invited participants, working in teams at each table, to spend a moment determining the most important question for the presenters. One question was collected from each team for later review and answers during the panel discussion. Meeting participants were interested in understanding ways to best collaborate and how to combine funding streams across agencies. A list of these questions is included in Appendix A-4.
Mr. Wilkinson then described an overview of the meeting, including the proposed outcomes, as listed on the meeting agenda. He pointed out that resource decisions would not be made during this meeting, but rather recommendations for the most promising collaborative research opportunities and a description of what they would look like, including structure and strategies for sustainability.
Dr. Jamila Rashid, Office of Public Health Research, Office of Chief Science Officer, CDC
Dr. Rashid expressed delight that this meeting is finally underway after months of intensive planning by a small team of people, including core members Dr. Elizabeth Skillen and Ms. Cindi Melanson as well as the leadership of their office, Dr. Robert Spengler and Dr. Robert Wagner, all of whom worked hard bringing this event into fruition. She noted that this is not simply an accomplishment for CDC, but for all federal partners participating both in the first meeting and the current one. She also acknowledged all members of the CPW that was formed during the first meeting and thanked them for their efforts.
Dr. Rashid pointed out that the concept of collaboration among agencies is not a new one, but this is perhaps the first time that many agencies from across executive branches have come together to find common ground and seek to accomplish something greater than we are able to do individually. She invited participants to dream with them and "stay for the long haul." The intention is that this effort will be sustained over time.
She concluded by stating that through collaboration great accomplishments that were thought to be impossible can be achieved. Again she thanked and applauded everyone involved for their participation.
Mr. Michael Wilkinson, Meeting Facilitator, CEO , Leadership Strategies, Inc.
Mr. Wilkinson described the objective for each of the three breakout sessions:
Breakout Session 1: Of the vast number of possible research questions for the four areas of focus, determine what are the most important questions (one to three) to address in each area.
Breakout Session 2: Given the research questions determined in Session 1, plan a starter research description for each question for each of the priority areas.
Breakout Session 3: Develop a plan for implementation and sustainability for the research initiatives in each priority area.
He instructed the group to utilize the following methods for accomplishing the task outlined for Session 1:
- He referred to the starter list developed by OPHR and the CPW for each of the four areas, which he asked the participants to consider and comment on in terms of their likes and concerns.
- They were asked to make recommendations for other research questions that may not be on the starter lists.
- They were then asked to advocate or lobby within their group for research questions they felt are most important and why. This will allow everyone to share their view of what is most important.
- Workgroups were instructed to select the most important priority question(s)
for the research for which a research description will be drafted in
the next session. He recommended that each group limits its recommendation
to a maximum of three questions. He further advised that two key questions
might be considered when trying to determine the priority:
- What research offers potential impact for addressing the area of greatest need?
- What research offers the greatest opportunity for collaboration?
- Document the reasons for identifying your question(s) as a research priority.
Workgroup Reports from Breakout Session 1
The second plenary session began with reports from each of the four workgroups in Breakout Session 1. Mr. Wilkinson instructed each group to have its representative respond to the five components outlined in the methodology and requested that the other participants offer feedback in terms of likes and concerns. Summaries of slides for the reports from each group are included in Appendices B. The following is a summary of each group's presentation.
Mental Health Group
This group announced that it fittingly went outside the box, made their own rules and did not follow the instructions. Group members discussed possible research questions and talked about likes and concerns. However, instead determining recommended research priorities, they decided to start with identifying critical themes and changes they wanted to make to those.
Critical themes identified:
- The issue of mental health and substance abuse as co-occurring disorders - They felt that this is one of the critical themes that was left out.
- Workforce and career development needs - Do the workforce and community have the capacity to implement and do the research to put into effect whatever recommendations we come up with?
- Change in language from mental illness to mental health and resiliency - They wanted to put a positive spin on this, focusing on what is right in society and what is working instead of what is wrong.
- The issue of health disparities in general as opposed to within one subset - The group agreed it was important not to focus on only one group, but rather to translate to different settings (e.g., institutional versus community settings, rural versus urban versus suburban geographic settings, public health settings versus both juvenile and adult correctional settings).
- It was observed that several of these questions are being raised by countless researchers, and the group members decided perhaps they should take it upon themselves to ask bolder questions that are not being asked in the field, such as the policy of the difference between institutionalization and de-institutionalization. What works? Should we consider going back to some sort of institutionalized model? Should we rely on correctional institutions to be mental health facilities?
Feedback for the group included praise for its bold questions and the emphasis on resiliency and mental health. One suggestion for the group was that it may not have not directly addressed how race may affect outcomes in terms of disparate access and treatment, including segregation.
This group shared that its discussion was very lively and that people generally liked the starter items, although several ideas were presented about reordering them. Everyone agreed to call it a systematic approach in that it would be more effective to focus on lifestyle rather than just obesity. One clear area missing was the determinants of behavior, including financial, societal, and other factors.
They decided on the following two research questions:
- What are the individual, societal, and environmental determinants of unhealthful and healthful diet and physical activity behaviors that lead to differential rates of obesity?
- What are the cost-effective, sustainable approaches to address these factors that will decrease obesity in disadvantaged groups?
Feedback consisted of accolades for including social determinants, since it was felt to be an extremely important issue that cuts across all four topics. It was also stated that the broad nature of the question was a positive factor. One concern raised was that genetic precursors to behavior are often overlooked as a determinant.
After discussion, the group agreed that it had a great starter list of six questions and then developed 26 questions of its own. Ultimately, they came back to two questions that were on the original starter list.
The group recommended the following two research questions:
- What is the relationship between co-morbidities and social determinants of healthcare?
- How does the electronic medical record ( EMR ) and health information technology improve healthcare and how can it be better used to address multiple chronic conditions in disadvantaged persons across the life spectrum of the individual?
Feedback to the co-morbidities group was that the emphasis of looking across the lifespan of individuals was a great idea and that the group did a fine job of presenting its work. No concerns or suggestions were expressed.
Built Environment Group
A great discussion was held in this group, and after talking about members' likes and dislikes regarding the starter questions and consolidating a couple of questions, it came up with three recommended priority research questions:
- What are the economic impacts of quality and design of homes, schools, workplaces, communities, parks, green spaces, and transportation systems on health behaviors of vulnerable populations?
- What is the role of public and social policy in mediating the built environment?
- What research methodologies are most appropriate for evaluating the impact of the built environment in multiple domains?
There was positive feedback regarding the emphasis on social policy, public policy, and research. One concern expressed was that they are focusing on behavior instead of outcomes. It was also shared that it might be a good thing to incorporate all aspects into built environment (mental health, obesity, and co-morbidities).
A member of the workgroup added that the role of public and social policy would not exclude the private sector. Another concern raised was that using the term "economic impact" might be confusing and the group may want to consider rewording or changing the order of the first statement.
Mr. Wilkinson thanked everyone for their presentations and feedback.
Working Lunch: Research to Practice Presentation
Dr. Robin Wagner, Associate Director for Research Planning and Evaluation, Office of Public Health Research, Office of Chief Science Officer, CDC
Dr. Wagner added her words of welcome to the participants. She noted that the emphasis of this meeting is on creating collaborations for intervention, dissemination and implementation research that will move us forward in eliminating health disparities because implementation of advanced medical findings into practice has not been achieved in diverse settings. It has also been observed that there are many approaches, but very little consensus offered in the literature regarding basic definitions and models for dissemination and implementation.
By way of guidance, Dr. Chambers of NIH was asked present on key components of successful dissemination and implementation research. Dr. Wagner then welcomed Dr. Chambers to the podium.
Dr. David Chambers, Associate Director, Dissemination and Implementation Research, National Institutes for Mental Health, NIH
Dr. Chambers identified key questions on which his Institute focused, namely: "How do we ensure that patients get the best possible care? How do stakeholders obtain and use new information about treatments? And, how can the system provide the best possible care for patients? He pointed out that often the current process of scientific development (e.g., from efficacy to effectiveness to "real-world adaptation") compounds the problem in some ways, because researchers may assume that they can only address one scientific stage once the previous one has been accomplished. Due to the challenges of maintaining internal validity (e.g., significance of the research findings), research studies can omit other outcomes which ideally should be present from the beginning of the process of developing interventions, such as clinician outcomes, system outcomes, individual patient outcomes, and community outcomes.
In terms of putting research into practice, initiatives are present at various levels, from federal and private foundations at the national level to the state and local level. One issue that continues to present a challenge is that of fidelity to the original research components in the face of the need to adapt the research for a better fit within a particular system. Continually, there exists the problem of tested interventions being under-utilized and used interventions being under-tested.
Another major challenge identified is the need to better understand the optimal construction of interventions. We need to become more service oriented, asking how we might improve the likelihood of implementation at the level of testing. We need to improve the science of dissemination and implementation, remembering that evidence is only one part of the puzzle. We need to move away from linear trajectory and think more about the complex final structure from as early in the process as possible. Publishing is not the endpoint of research, so we must focus on implementation to shorten the time frame for impact.
Recognizing that when it comes to the terminology being used to describe these concepts often the same words can mean different things in different settings. Therefore, NIH has attempted to more clearly define their working definitions of the terms evidenced-based practice, dissemination, and implementation, as follows:
- Evidenced-based practice: "The conscientious, explicit, and judicious use of current best evidence in making decisions about the care of individual patients." (Sacket et al, 1996)
- Dissemination: "The targeted distribution of information and intervention materials to a specific public health or clinical practice audience." (adapted from Lomas, 1993)
- Implementation: "The use of strategies to introduce or change the evidence-based health interventions within specific settings." (adapted from Lomas, 1993)
Dr. Chambers stated that they have found that evidence does not override experience, and it does not always summarize all knowledge in the field, as is often assumed, because evidence is always evolving; it does not end with publication. We have to talk about the evidence not only in terms of its strength or weakness, but more specifically in terms of evidence "of what, for what, and for whom?"
When considering the task of dissemination, we need to be able to communicate the evidence more effectively, using a standard method of dissemination, opinion leaders to help contextualize the evidence, and using more active methods like discussion and problem solving. He noted that there are several barriers to communication including resistance to the message at the organization or professional level, lack of incentives to hear the message, and irrelevance of the message to a specific audience.
With regard to implementation, much has been learned from previous studies. He outlined several lessons learned; chief among them being the importance of understanding the culture of an organization or community as part of the implementation effort, and the fact that implementation affects everyone in the system from patients to providers.
He then shared several examples of ongoing research efforts aimed at understanding the complexity of the process of dissemination and implementation, including the influence of content, context, and process. He described recent advances being made throughout NIH in the area of research on dissemination and implementation, as well as the new series of goals for this research.
Finally, Dr. Chambers referenced a link to the program announcement at the NIH site where participants can obtain further information about some of the studies that NIH encourages the field to pursue. He invited questions, comments, and new ideas from the group in the spirit of the developing "community of science."
Questions and Answers
Mr. Michael Wilkinson, Meeting Facilitator, CEO, Leadership Strategies, Inc.
Mr. Wilkinson briefly recapped key points addressed by Dr. Chambers and asked the participants to spend one minute working in their teams to identify one key question each for Dr. Chambers. The questions collected from each team and answers from the speakers are listed in Appendix A-5. Dr. Chambers also invited any additional questions or input via email. The questions were related to examples of successful dissemination activities in settings outside of clinical practice, incentives used to motive research community, and strategies for improved collaboration on research.
Overview of Breakout Session 2
Mr. Wilkinson gave instruction to the participants regarding the second breakout session. He noted that not all of the questions presented during the reports from Session 1 addressed health disparities and he reminded everyone that the two points of focus for their discussion should be health disparities research and collaboration.
The purpose of Breakout Session 2 is to develop the research descriptions for each question identified in the four focus groups. The following components should be produced for each research question selected for each of the four topics:
- Describe the background, including a brief description of the problem and rationale for the research needs
- Identify the purpose of this particular research
- Identify programmatic areas of interest
- Identify potential starter objectives
- Identify eligible applicants
- Identify first-wins
- Identify other collaborators
- Identify priorities for the future
Meeting Report - Day 2
Partnerships and Sustainability
Mr. Wilkinson welcomed everyone back for day two of the meeting. He reviewed the overall objectives for the day and progress thus far from day one. He then gave an overview of the current day's agenda and remaining objectives to be accomplished.
Dr. Jamila Rashid, Office of Public Health Research, Office of Chief Science Officer, CDC
Dr. Rashid presented a brief summary of the snapshot tool to solicit feedback about research collaborations that people were doing. Seven agencies submitted the tool out of 13 agencies that were invited; therefore the summary highlights example research projects submitted by these agencies and is not representative of all projects and all agencies. She quickly reviewed the summary document with the group which outlined 20 projects from six areas, describing a total of 98 research projects. She encouraged the group to consider this information when working in the second breakout session.
Dr. Rashid introduced Dr. Rollins who spoke on the topic of health disparities initiatives.
Dr. Rochelle Rollins, Acting Director of Division of Policy and Data, Office of Minority Health (OMH)
Dr. Rollins began with a brief overview of the points she would cover during her presentation. She shared a bit about the Office of Minority Health (OMH), explaining that its mission is to improve the health of racial and ethnic minority populations through the development of health policies and programs that will help eliminate health disparities. She commented that the OMH Division of Policy and Data has several activities such as working with the HHS Data Council. One collaborative effort was the creation and maintenance of the HHS Minority Web Data Portal which was launched in early 2006. The purpose of the portal is to assist a wide variety of users (e.g., researchers, students, policy makers and community groups) in identifying research and data collections, analytic reports and publications that may be useful in health disparities research and policy efforts. S he encouraged everyone to visit the portal. The link is www.hhs-stat.net/omh .
She shared information about the HHS Health Disparities Council which is charged with ensuring that all HHS disparity-focused activities are aligned to enhance and expand the department's role in reducing health disparities. She then presented an example of the type of work followed by the Council; the Trans-HHS Cancer Health Disparities Progress Review Group (PRG) Report. The link is www.hhs.gov/chdprg . The PRG Report (2003-2004) was requested by the Secretary and the recommendations are being monitored by the Council's Subcommittee on Cancer. She noted that although the PRG Report had public and private momentum, maintaining the momentum is a challenge. This led to a discussion of lessons learned about how to maintain momentum. Dr. Rollins observed that relationships, smooth handoffs, and making the business case for the topic at hand are key components to maintaining momentum. On the subject of partnerships and sustainability, she echoed Dr. Ruffin's comments from the previous day, stating that each federal partner must be willing to contribute whatever they can in order to have a successful partnership, whether it is funding, time, ideas, or some combination of those factors. She pointed out that it is especially important to have multiple champions because no one agency can "carry the ball" alone. Lastly, she noted that a strong foundation is essential to achieving sustainability. Part of building a strong foundation involves taking "baby steps" and being patient with the process.
Dr. Rollins concluded her remarks by sharing her contact information and expressing a desire for the group to carefully plan the next steps of the collaboration so that progress can be made on all research areas targeted.
Questions and Answers
Mr. Wilkinson quickly summarized Dr. Rollins' key points and invited questions from participants. A few questions focused on the HHS Disparities Council its past efforts and its health disparities focus areas. Dr. Rollins encouraged people to speak with their agency representatives about specific activities and areas of focus in which agency representatives may participate. She shared that working across agencies has been a very positive experience for her and allows creativity and thinking "outside the box." A list of the questions and answers for this presentation is included in Appendix A-6.
Report Back from Breakout Session 2
Mr. Wilkinson invited representatives from each workgroup to present their results from Breakout Session 2. A summary of slide presentations for each workgroup is included in Appendices B.
Mental Health Group
After reviewing the six questions that they came up with on day one and recognizing the interrelatedness on several, they consolidated them into one key question: What are the key determinants of effective interventions and systems that promote mental health resiliency and substance abuse resistance and recovery in multiple service sectors for disparate populations?
The presenter very briefly scanned through the slides which detailed a description of the problem, a rationale for the research, the purpose, potential programmatic areas, potential starter objectives, eligible applicants, potential first-wins, other collaborators, and priorities for the future. The group believed that identifying innovative approaches and developing systems and capacity for implementation and translation of approaches was critical to address health disparities. The group also emphasized the need to address disparities broadly, not just for racial and ethnic minorities.
Feedback to the group noted that workforce keeps coming up as an issue and the suggestion was offered that perhaps it would be worthwhile to get Health Resources and Services Administration (HRSA) involved in this initiative. The presenter for this group responded that he feels it is important to help people build their own capacity within communities, which means using more than just professionals.
This group determined that the topic was so broad that they needed to divide the research description into two parts: determinants and interventions. As a result, group members split the workgroup to allow each smaller group to work on one area.
The first presenter described key points in the research description for determinants of obesity. One key point made was that all populations are impacted, but there is an increased burden for the United States and for women, particularly African American and Hispanic women and that many co-morbidities can occur as a result. The presenter described the rationale for the research, the purpose, potential programmatic areas, potential starter objectives, eligible applicants, potential first-wins, potential collaborators, and priorities for the future, noting that it should be possible to solicit lots of applications for such a vast topic. The first group explained that the purpose of the research was to "identify effective intervention approaches to reduce obesity in vulnerable and underserved population groups by addressing determinants of unhealthful diet and physical activity behaviors."
Following the same template as others, the second presenter gave a detailed description of the problem, the rationale for the research, the purpose, potential programmatic areas, potential starter objectives, eligible applicants, potential first-wins, other collaborators, and priorities for the future. He pointed out that built environment and obesity cannot be dissociated and that whatever is done there will have a tremendous impact on obesity. The second group explained that the purpose of the research was to "conduct basic, clinical, behavioral, or translational research which addresses modifiable determinants of obesity in populations disproportionately affected across the lifespan."
Various people shared comments, many stating they were very impressed; thus a lengthy discussion followed the obesity presentation. The following suggestions and key points were made:
- Perhaps we should also consider taking a careful look at the increased stress in our lifestyles, and try to find ways to get back to fundamental issues like shorter work days, physical activity at the workplace, and exercise activity for enjoyment - not just as a necessary task.
- We may already know what works to improve quality of life as it relates to reducing obesity; we just do not know yet how to put that together as a strategy. This consortium may be the key in creating and implementing a successful intervention.
- We must also look at the behavior of the food and restaurant industry and the influence of economics and market forces in our analysis, because there are definitely forces beyond individual and community behavior affecting this.
- Validity is a term which refers to scientific research; what we should be seeking and pushing for is cultural and linguistic competence in order to have validity in any of these community-based studies.
- Treatment options for the morbidly obese were not mentioned and discussed as interventions.
- Health disparities are often the path to disability, and it would be a mistake to not consider the ultimate outcomes, costs, and other implications of that fact.
- Research has been conducted about the impact of various built environments on obesity, showing that there can be as much as a one to six pound difference in weight depending upon the density of the community, the environment, and other factors. It was also noted that auto dependency plays a significant role in some of the disparate health impacts.
This group used an entirely different approach by dividing itself into five teams. The following key points were presented:
- The trend of co-morbidities shows no signs of abating
- Discrimination and ethnicity plays a large role in this phenomenon
- The approach must be comprehensive
Research themes were divided into several sections and questions for each theme were outlined in detail in their slide presentation. Each of the teams presented a few research themes and questions contained within those. The list of research themes included a) quality and outcome measures, b) organization of delivery systems, c) health technology, d) data, e) effective prevention strategies, and f) access to health care.
There were no questions or comments for this team.
Two presenters spoke on behalf of this group, addressing the research description for three key questions: What are the impacts of the built environment on health outcomes of vulnerable populations? What is the best application of public and social policies in reducing health disparities as related to the built environment and the health of vulnerable populations? And
what are the tools needed to understand the dynamics of the built environment and their influences on health and health disparities?
Referencing their slides, the first presenter briefly expanded on the description of the problem for each of the three questions, the rationale for the research, the purpose, potential programmatic areas, potential starter objectives, eligible applicants, and potential funding mechanisms for the research. Specific programmatic interests identified included the built environment as an enabler of health behaviors, accessibility in the built environment on the health outcomes of people with disabilities, and how changes in the built environment may influence the occurrence of violence and injuries. Many starter objectives to support the purpose of this research were proposed and are listed in Appendix B-4.
The second presenter pointed out that the first two research topics involving the relationship between the policy environment and built environment are greatly needed. He also commented that the discussion was very lively with much time spent clarifying definitions which turned out to be quite productive as they worked to understand the varying points of view held by participants in the group.
One question presented to the group was whether "health" includes mental health when considering the built environment. A group member replied that they spent a great deal of time considering that question and determined that this topic is quite broad and would include mental health.
Another question was whether gentrification came in as a topic of discussion in their group. She noted that attempts to "renew" an area have substantial impact on residents who are in the community, those who are moved out, and those who are moving back once the environments have been built. Was that part of the discussion? A group member responded that, yes that was part of the discussion, along with the acknowledgment that the same environment can have a positive impact for one group and a negative one for another group, citing the example of cul de sacs which have a positive health impact for kids, but a negative impact for adults.
There was also positive feedback regarding this group's focus on social and public policy. It was suggested that perhaps this group could call for and help develop equity impact assessments to review existing and proposed policies and programs, and that this may help with the issue of gentrification where people are moved out without thinking about the health impacts on those populations. The group really liked the concept of health equity assessments and recognized the fact that valid and reliable tools are needed for such assessments.
Instructions for Breakout Session 3
Mr. Wilkinson gave the instructions for the work to be done during breakout Session 3.
- Develop a starter plan for how funding is recommended and for implementation of the collaborative research.
Overview of the method:
- Identify potential collaborating organizations
- Identify potential funding strategies
- Identify activities to sustain this effort
- Identify potential roles
Mr. Wilkinson reminded everyone to be sure that their third and fourth items address the issue of health disparities specifically and not just the topic in general.
Working Lunch: Interagency Funding Collaboration: The NIOSH Experience
Dr. Robin Wagner, OPHR, OCSO, CDC
Dr. Wagner welcomed everyone and introduced Dr. Roy Fleming, Senior Science Advise, Office of Extramural Programs; Dr. Sherry Baron, Coordinator for Occupational Health Disparities; and Dr. Jim Newhall, Program Lead, Office of Extramural Programs, National Institute for Occupational Safety and Health (NIOSH) . Then she briefly outlined what each presenter would speak on relative to interagency funding collaborations.
Dr. Roy Fleming, Senior Science Advisor, Office of Extramural Programs
Dr. Fleming began by explaining that the National Occupational Research Agenda (NORA) initiative, which began in 1996, is the largest initiative that NIOSH has ever implemented as a collaborative effort. Many lessons were learned that should be applicable to the efforts of this meeting on health disparities.
As shown in his outline, there were six keys to success that he addressed:
- Maximize partnerships
- Develop with stakeholders
- Adopt a new culture
- Coordinate intramural and extramural activities
- Conduct quality peer review
- Deliver results
Dr. Fleming mentioned that there were 20 teams, similar to the focus groups for this meeting, which were the backbone of their initiative. Their job was to come with an agenda and begin to identify resources. Over 500 organizations and individuals (outside of NIOSH) contributed to the agenda or topics on the agenda. There was also a NORA Liaison Team made up of 22 members representing industry, labor, academia, professional organizations, and government. Within NIOSH, a Steering Committee interacted with the Liaison Team and NORA teams to promote communications, and this was an important element to the success of the NORA initiative. He pointed out that the process of identifying topics and evolving needs is ongoing, so the NORA teams have remained active over the past 10 years.
Culture adoption turned out to be another key element because working on this initiative changed the way that NIOSH did business, and the extramural community embraced the initiative as well. He mentioned that they developed a decision logic for determining if a topic was intramural or extramural and referred to the appropriate slide within the presentation for more details. This tool was essential in the overall coordination of activities. He stated out that the distribution of new funds was 75% extramural and 25% intramural in order to engage as many partners as possible.
NORA clearly benefited from several relationships that NIOSH has had in place for decades with NIH and CDC. Multiple funding mechanisms were utilized to involve people at different stages of their research careers and to promote different types of research. Using the same types of grants as NIH facilitated cooperation in supporting a broad range of occupational safety and health priorities. Also, to maximize interest as well as focus some resources on targeted areas, NIOSH used both Program Announcements (PA) and Requests for Applications (RFA) to solicit extramural applications.
He spoke about the progress made in funding of the NORA initiative over the last 10 years, starting from 15.4 million dollars in FY96 and growing to 97.1 million dollars in FY05. The number of applications reviewed has continued to grow over the life of the initiative, and he noted that the numbers were substantially higher during years when an RFA or PA was released, as it tends to stimulate applications. The success rate for funding, from an extramural standpoint, rose significantly early in the initiative, but the rate has dropped off as budgets remained flat over the past few years.
Because of the program's success, tremendous gains have been made in understanding and solving health and safety concerns in the workplace. Over 400 summaries of NORA success stories are posted on the NIOSH website and he encouraged everyone to visit that site for more information about the program.
Dr. Sherry Baron, Coordinator for Occupational Health Disparities
While Dr. Fleming gave a broad overview of the NORA initiative, Dr. Baron focused her comments on one specific priority area and how one funding initiative came out of that. Her topic was a case study on interagency collaboration, namely on environmental justice.
Occupational health disparities was one of the priority areas identified because they found that not only were there disparities for certain groups of workers in health outcomes, but these groups were also underserved in terms of research that had taken place regarding causes and interventions.
Teams were established and immigrant workers were quickly identified as one of the main priorities based on the tremendous increase in the number of foreign born workers and clear documentation that work-related fatalities are much higher among foreign born workers. While it was recognized that there were many community-based organizations working with immigrant workers, not many of them considered occupational safety and health as one of their service areas.
Once the priority was identified, the task became leveraging funding to support the needed research. In this case, it worked out that priorities identified by the team fit perfectly within the scope of an initiative by the National Institute for Environmental Health Sciences (NIEHS) regarding environmental justice. The collaborative approach involved participation by three groups: Community-based organizations, universities, and community health centers. The results of the collaboration were very positive and they were able to fund many more projects that would not have been possible otherwise.
Three examples were shared on the types of research that was done, along with the partners and specific aims of each project:
- One for poultry workers
- One for indigenous farm workers
- One for nail salon workers in the Asian community
The impact of the collaboration is that the number and quality of applications received increased, and this program helped to expand the concept of environmental justice to include workplace exposure.
In closing, she noted that the tremendous success of these programs has also resulted in NIOSH embracing the concept of community-based research methods, and has opened the door for more collaborations of this type.
Dr. Jim Newhall, Program Lead, Office of Extramural Programs, NIOSH
Dr. Newhall acknowledged that collaborations can be challenging, even among members of the same agency, and he applauded the efforts of OPHR in bringing this group together.
Using the example of nano tubes, he described the way in which one tiny small component of an everyday product (required for use in stadium lighting and the like) can potentially have far-reaching impacts on health. It becomes necessary to involve experts from several departments and agencies to address issues such as these. NIH has developed offices of extramural research, but it is necessary for these offices to communicate with one another and meetings like this are where it begins to happen. For some agencies, like CDC, this is a new concept and we must work together diligently.
Even with the success of NORA and future plans for NORA2, they recognize that the world is bigger than NORA and NIOSH; there are not enough resources to take care of everything that impacts workers and so collaboration is really the key.
Questions and Answers
Mr. Wilkinson thanked the panel for their contributions and invited questions and comments from the participants. Questions and discussion focused on sustainability of the NORA effort and dissemination of findings from NORA. Participants were interested in lessons learned. Panel members believe the continuity of program indicates success and they are able to capture many outcomes via awarded grants. A summary of this question and answer session is included in Appendix A-7.
Report Back from Breakout Session 3
Mr. Wilkinson invited the workgroups to present their results from Breakout Session 3. A summary of slide presentations for each workgroup is included in Appendices B.
Mental Health Group
The group presenter briefly discussed the group's plans for funding and activities for sustainability. Some of the potential collaborating organizations identified by the workgroup include HHS and other federal agencies, professional organizations, foundations, and insurers, The group felt that memorandums of understanding, interagency agreements, grants and cooperative agreements, and parallel funding announcements could serve as potential types of funding mechanisms. There were no comments or questions for this group following the presentation.
This group did not have any slides to present and group members noted that they had already touched on the key question of funding strategies. The short answer was "everybody and all things." So, instead the group focused its discussion on the topic of models for sustainability. It was agreed that it would be best to use an existing structure in an effort to make the most efficient use of everyone's time. They talked about existing structures, including three that were nationally recognized: The National Diabetes Education Project, The Five-A-Day Project, and The Interagency Workgroup on Obesity Research (IWOR) - on which they had the most discussion. The unique feature of IWOR is that one of the co-leads for that effort was part of their workgroup, which meant they could actually take action. Therefore they identified three action items:
- They will formalize and sustain collaboration between the workgroup and IWOR by having Dr. Spengler present a half-day forum on health disparities and obesity.
- They will have members of this workgroup participate as they would like on one of the four subgroups for IWOR.
- Discussion then turned to the Obesity Research Taskforce that NIH has and it was determined that it might be helpful if something similar was in place at CDC so that both leads could facilitate communication.
Regarding champions for this effort, it was agreed that someone from NIH and someone from CDC would shepherd this work through, but there was not enough power within their group to determine who that would be.
There were no comments or recommendations for this group following its presentation.
This group decided to focus on how it could sustain the entire effort, not just the projects around co-morbidities. The group members generated a list of 24 activities and grouped them into five clusters. These five clusters were a) infrastructure and follow-up, b) communication and outreach, c) building buy in, will and alliances, d) building the case and background, and e) accountability. Meeting participants concurred with the clusters of activities, and these became the focus of discussion during the next portion of the meeting.
Built Environment Group
The presenter briefly reviewed three topic areas upon which the group decided, and then shared its plans for potential funding collaborators and activities for sustainability. The group compiled a long list of potential funding collaborators including many federal agencies, nongovernmental organizations and foundations. Sustaining activities identified by the group include future small group discussions, memorandums of understanding for initiatives, intramural research activities, and partnering with private practice groups among others. There were no questions or comments for this group following its presentation.
Setting a Sustainable Structure for Future Collaboration
Mr. Wilkerson proposed that the entire group adopts the five activity groups that were suggested by the Co-Morbidity Group as a framework for the other three topic areas to replicate the effort:
- Infrastructure and Follow-up
- Communications and Outreach
- Building the Case and Background
- Building Buy-in, Will, and Alliances
Everyone was in agreement that these five categories represented a good starting point and it was moved and seconded by the group to adopt this as the framework for building sustainability in each of the four topic areas, and for the overall collaborative efforts to eliminate health disparities.
Although several participants had to leave early, discussion continued among the remaining individuals regarding the possible organizational structure for the initiative which was proposed by Dr. Rashid.
Following much debate, consensus was achieved on the following key points:
- Dr. Rashid noted that one part of the meeting that was inadvertently eliminated is the question of what else may be missing. It was acknowledged that these four areas of focus are not intended to be a comprehensive representation of the issue of health disparities; they are simply the ones that were agreed as top priority items and a way to start the discussion on how to collaborate on other topics.
- The group agreed to expand the initiative with these four topics and defer adding additional workgroups until a more solid framework has been put in place for governing the overall effort.
- Advocacy and social justice were strongly recommended as a possible component of the steering committee because social justice likely impacts all areas, or perhaps it could be added as a fifth area of focus.
- The NORA program and the Interagency Committee on Disability Research (ICDR) were both mentioned as potential models for this initiative.
- There will need to be a top tier/champion for this initiative to advocate and keep it going.
- There should be a second tier group of conveners or steering committee to provide guidance and solicit collaborative partners and to serve as a governing body for all focus areas.
- It was recommended that the existing Collaborative Planning Workgroup may serve as the initial steering committee to keep the effort going, focusing on the five activities for sustainability that were adopted earlier.
- It is probably not necessary to have an individual steering committee for each focus area. There was a general concern with having too many levels.
- There may need to be an intermediary entity that could handle basic activities that apply to all the focus areas, instead of repeating the same activities for all four (or more) focus areas.
- The size of the working groups can not be determined since the size would depend not only on the agenda being tackled by that focus group, but also by who responded to the invitation for collaboration. It was felt that because the overriding objective is to encourage collaboration across groups, it would not be wise to set a limit for the work- groups at this time.
Other comments and suggestions made where there was not necessarily consensus or for which a decision was deferred included the following:
- It was mentioned that the HHS Disparities Council might serve as the top tier/ champion for the collaborative effort and it was acknowledged that several other options are also possible for this role; and if the objective is to move beyond HHS , would it be a good idea for our collaborative champion to be within HHS .
- There was concern regarding the composition of the steering committee(s)' and workgroups' ratio of people working in health versus non-health related fields. One suggestion was to set up a 25:75% non-health to health ratio to ensure that there was adequate input from outside partners who may not realize the impact of their area on health. But another participant felt it was pointless to establish an artificial composition before answering the question of what the purpose is for the work that will be done.
- The exact location where the initiative is housed could not be agreed upon. One suggestion was that it should not be housed in any one agency, but rather to be set up as a shared responsibility.
- It would be advisable to have two co-chairs for each working group, one who works directly with the collaborative champion and one who is from a different agency and also serves on the steering committee.
Mr. Wilkerson quickly recapped the events and accomplishments of the past two days.
The immediate actions to be taken by the collaborative planning workgroup are to:
- Convene collaborative planning workgroups to address open issues from the meeting
- Consider recommendations for Champion/Advocate for the collaborative
- Examine proposed governance structure and plans
- Communicate back to the larger group about progress for the initiative
Dr. Rashid invited anyone interested in participating in the planning workgroup/steering committee to let her know. The intention is definitely not to be exclusionary.
Final remarks were offered by Dr. Spengler. He mentioned that the final report from the meeting as well as slide presentations for each of the four workgroups would be made available to all participants soon.
He thanked the meeting planners, our meeting facilitator, and other facilitators, as well as all the participants who contributed their expertise. He also invited everyone to maintain the networking that has been begun.
With that, the meeting adjourned.