Population health outcomes, such as improved life expectancy and quality of life, are shaped by interdependent social, economic, environmental, genetic, behavioral, and health care factors and will require robust national and community-based policies and dependable resources to accomplish them, summarized George Isham, senior advisor at Health Partners and co-chair of the Institute of Medicine roundtable. This workshop focused on the role and impact of the community and community-based policies. In the final session, Isham shared his observations and called upon participants to share their reflections and suggestions for how to move forward. Many participants expressed optimism at the direction of the presentations and discussions and stressed the need to continue to intentionally connect with people in other institutions, take risks, and continue to drive progress. Several participants reiterated the emerging power of the youth voice and the importance of building leaders from within the community. The following topics were highlighted by roundtable members and participants as key takeaway messages from the presentations they heard.
An issue that was raised throughout the workshop was how to scale up community-organizing efforts, including how broad the scope needs to be to make a real difference in the community. Isham noted that not every community that faces health inequities or detrimental environ-
mental influences on health has the level of active community involvement needed to begin to make change. How can the capacity for change in a community be fostered, encouraged, and scaled? What entity or resources need to be engaged to begin to organize those communities in which there is a need but for which organizing is not happening?
David Kindig, from the University of Wisconsin School of Medicine and Public Health, said that the interrelationships between the multiple determinants of health, particularly the social determinants, make it challenging to figure out what the right balance is, which issues should be addressed first, and what should be funded. The answers will vary from place to place since different communities have different needs. Each community needs to be involved in finding the balance and scope that best meets its needs, he said.
Cathy Basse from The Dow Chemical Company said that there is no single path to scale, just as there is no one sector that holds all the answers. Without a multisector collaboration that mobilizes resources to address these issues together, it will be difficult to bring community-organizing efforts to scale. Isham asked how the roundtable might play a role in engaging others beyond the roundtable and push forward. Another roundtable member suggested that the roundtable can, through its workshops and publications, demonstrate disparities in health and health access, the built environment, and other risks and discuss further the measures that could support the people who are energized to do this work.
Phyllis Meadows of The Kresge Foundation and the University of Michigan School of Public Health pointed out that the conversation about the importance of connecting with the community is not new. She challenged participants to consider what can be done differently now to move the conversation beyond where it was two decades ago. She did note that 20 years ago there was a lot of discussion about “empowering the community” as if empowerment were something to be bestowed upon people, but at this workshop the discussion was of the power that is in communities and of the knowledge and expertise that community members can bring to the table as partners. Meadows added that it is refreshing to see this change in focus because communities are powerful. She added that “they do have expertise, they do have knowledge, and that is something that I think we really do have to reemphasize.”
Kindig recalled that when discussing the need for better food in schools during the site visit with the students of InnerCity Struggle, a picture of a rotten cheese sandwich that was served at a school lunch was shown, instantly sparking much conversation. While professionals
focus on epidemiology or quantitative goals, it is often the images and the narratives that are highly motivating for population health improvement. Isham suggested that it would be good to have more commentary on some of these issues from some of the youth voices whom the roundtable has heard from. Many participants were also struck by the various maps presented by keynote speaker Manuel Pastor during his presentation which showed quite dramatically the relationship between demographics and proximity to environmental toxins.1 It was suggested that the roundtable could share the stories of the community organizers in an accessible way, perhaps on the roundtable website, to inspire other community organizations.
George Flores suggested that the communities are speaking from a social movement perspective, although the institutions that have the power to influence an agenda that focuses on improving communities’ health generally operate from a capitalist perspective. He suggested that a respected entity in the field of population health should find the common language and the convincing arguments that will bridge the interests of those who are in positions of economic power and those who are looking to improve their communities and their lives. The narrative must tell an honest story that will resonate with both sides, Flores said, so that individuals and groups can understand each other’s agendas and work together toward improvement.
Kindig added that finding common ground between liberals and conservatives is also important. He noted that opinion surveys suggest that conservatives express support for government involvement in programs to combat the obesity epidemic when the programs are linked to military readiness. This is an example of the challenges of finding common ground: There must be an understanding of the values that are tied to the positions taken by others. Kindig referred participants to a book on developing narratives for social movements, It Was Like a Fever, by Francesco Polletta, the keynote speaker at the December 2013 roundtable workshop.2
Pastor described community organizing in terms of developing an ecosystem of groups that can work together to transform the policies in a
1 Available at http://iom.edu/~/media/Files/Activity%20Files/PublicHealth/PopulationHealthImprovementRT/14-APR-10/Presentations/1_Manuel_Pastor.pdf (accessed August 15, 2014).
2 See http://www.iom.edu/Activities/PublicHealth/PopulationHealthImprovementRT/2013-DEC-05.aspx (accessed July 25, 2014).
community (see Chapter 2). In the final session there was further discussion of the various elements of that ecosystem.
Thomas LaVeist of the Johns Hopkins Bloomberg School of Public Health pointed out that there is a lot in the scientific literature on university–community partnerships, and he suggested that the roundtable explore that relationship further. It was discussed during the workshop that the relationship should be a partnership and that academia and public health organizations need to see the community as partners, not clients. However, LaVeist pointed out that it is often the case that the university researchers concede control of a project to the community. That is not a partnership, either. The community needs to understand the incentive structure that university researchers are operating under (i.e., the need to publish robust analyses). If the researchers do not produce journal articles (the currency with which they maintain and advance their positions, obtain funding, etc.), they may not be there the next year to continue as a partner. The university and the community both have needs and interests, and both bring something powerful and important to the table.
Grant Funding Drives the Agenda
Participants discussed how often the required deliverables and categorical nature of grant support prevents organic discussion at the community level about what the research priorities should be. Whether the funding is from government, philanthropy, or other sources, researchers are generally limited to a finite list of possibilities. Some participants felt that funders should place more importance on incorporating the community organizing component into the work. A participant suggested that another role for the roundtable could be to suggest to those who award grants that they should design grants so that researchers can first work with community organizers to determine their needs and interests and then identify methods they find acceptable and the outcomes they desire. The participant said that this is not possible in the typical R01 research grant from the National Institutes of Health. Although the Agency for Healthcare Research and Quality does award grants that cover the community-engagement process, the intent is more toward training academics for patient-centered outcomes research. Another participant pointed out that R01 grants are not traditionally made for community collaborations, although there are other funding mechanisms for partnerships, such as the U54 cooperative agreement awards from the National Cancer Institute. A participant who was previously involved in Centers
for Disease Control and Prevention (CDC) grant review of proposals for community-based and community-driven research suggested that perhaps CDC staff could advise applicants on the type of grants that were approved and on the level of success of funded work.
The Private Sector as Both Partner and Community Member
LaVeist expanded on the discussion from the third panel session (see Chapter 5), noting that the private sector offers great potential, including the ability to bring financial and human resources to the table. He pointed out that private-sector businesses are members of the community and that most want to be good corporate citizens. Finding ways to get them to interact with communities is key. For example, are there economic benefits or incentives that could be tied to their interacting with the community?
The Health Department
Pamela Russo of the Robert Wood Johnson Foundation pointed out that there are many innovative health departments and that there is a tremendous amount of work being done to improve community conditions that is not necessarily organizing the community but that is providing support. Many community organizations do not know that they might be able to get help from a health department. This is an area where there is a need to raise awareness to further develop the ecosystem.
Isham reiterated the points made during the workshop about the need to collect data with utility in mind, not simply to gather knowledge. While data are important, they are most relevant and effective when directly linked to action. A participant suggested that the data and metrics selected may need to go beyond the common health-related metrics and even beyond the common social determinants of health metrics (e.g., graduation rates, income). For example, an increased feeling of hope in the community could be a measure of success. A participant suggested the roundtable look at the work of the Search Institute, which conducts research on what youth need in order to succeed, using surveys to understand their behaviors, experiences, and environments. The Search Institute works with partners to address critical issues in education and youth development.3 Another participant pointed out that there are other movements that have shared longer-term interests (e.g., environmental justice,
education reform, and restorative justice) and encouraged the roundtable to look to these movements for language and dialogue of topical interest and metrics that have already been identified.
A participant stressed that when people organize, whether it is for public health, housing, or any other issue, it is the larger vision that matters. Without the larger context, there is no movement. In this case, the participant suggested that heath itself is not the end goal, but rather a means to an end. She said that what really matters to individuals and communities is a future with hope and dignity. This is universal, she suggested, regardless of income level or the community a person comes from. Isham noted that this comment raises an important question: Health for what? He suggested that there may be a need for more conversation about health in relationship to other key social outcomes in order to figure out how to tell the stories that motivate others to get involved. Another participant added that health is the end goal and that not being able to have control over one’s health because of a lack of control over all of these other factors in one’s community strips people of their dignity. She said if you do not have your health, you do not have anything. This is one reason why people of all ages, including youth, can become so passionate about this work, she said, and why success in this area sparks such strength in communities. Another participant added that health is a means to achieve what an individual might articulate as his or her destiny.