for Healthy Communities
CCPH Member Stephen Updegrove, MD, MPH, first moved to the New Haven area almost 40 years ago beginning as a Yale undergraduate and pediatric resident and then as a pediatrician in a community health center for the medically underserved. He is one of three community representatives supported by Yale University's Clinical and Translational Science Award (CTSA) grant where he serves on the Community Alliance for Research and Engagement (CARE) Steering Committee which helps direct its efforts and on several of its Working Groups in such areas as research ethics and practice-based research. He also works on CARE's Community Interventions for Health initiative with the development of its data collection and interventional efforts, particularly in school and health care settings.
On the community
side, in addition to his clinical work at the Cornell Scott-Hill Health Center,
he chairs its community-based research planning and review committee and represents
the Center on the Robert Wood Johnson Clinical Scholars Program Steering Committee
where he helps advise Scholars on their community projects. At the New Haven Health
Department he also serves as the School Medical Advisor and works closely with
its Director on the implementation of their Health Equity Index project, the creation
of a city-wide wellness agenda and its collaboration with CARE.
what is the mission of your organization/partnership? What do you most want people
to know about it and the work that you do?
I guess to start with it would be incorrect to discuss what I do as being in the context of a single organization/partnership. A more accurate description would be to say I am in several of these and that my interest is in seeing this web of collaborations become increasingly stitched together. The most significant ones are:
1) The Office of Community-Based Research & Engagement is a part of the Yale Center for Clinical Investigation - the Clinical and Translational Science Award recipient at Yale University. The Office's underlying values are:
functional partnership within the Office is the Community
Alliance for Research and Engagement (CARE)
The NIH's new emphasis on translational research with its CTSAs represents a paradigm shift in the allocation of research dollars. But the true potential of the CTSAs as change agents depends upon how broadly we define 'translational'. It would still be a new world even if the most limited interpretation was used - i.e., the extension from bench to trials at the bedside or so-called T1 research. However, adopting so circumscribed a vision would be a tragedy. Ensuring that the results of research become generalizable (T2), that they actually are adopted into clinical practice on a broad scale (T3) and that they have an impact upon health policy (T4) is to fully realize the true promise of this transformative opportunity.
CARE's significance is that it has embraced the broadest reading of 'translational' and the partnership that is coalescing about it is laying the foundation for an authentically innovative and enduring collaboration. In addition to securing its own endowment as well as major grant funding outside of the CTSA project, CARE has set out to redefine Yale's relationship with the City of New Haven and the many communities and their representatives that comprise it. One of the very first projects was The Principles and Guidelines for Community-University Research Partnerships developed by a joint community/academic team that has been adopted for use university-wide, thus formally enshrining the underlying values mentioned above.
CARE has further embarked upon an unprecedented relationship with the City of New Haven to pursue a wellness agenda based upon the Health Equity Index and extending to policy development, research, data collection and program implementation. This is linked to CARE's current signature project - support for the first US Community Interventions for Health (CIH) site. CIH is the Oxford Health Alliance's international public health research program that seeks to address the issues of poor diet, tobacco use and lack of physical activity that are the principal risk factors for the four leading causes of mortality and account for roughly 50% of deaths worldwide. CARE is currently gathering data and identifying interventions in four major community settings - schools, workplaces, neighborhoods and health care practices - and in the process is working with a broad range of partners.
2) The Wellness Committee of the New Haven Public Schools began as an effort to transform the nutritional environment within the educational system by ridding it of junk food wherever it was sold, improving the quality of the food sold at meals and providing nutrition education as part of the health curriculum. In this effort we have been successful beyond anything we could have originally hoped. The Committee has brought together the most diverse group of individuals and entities that have ever, in a sustained effort (that now has lasted almost a decade), sought to bring about positive change in New Haven's schools. Its accomplishments have been many - the Wellness Plan it developed (a federal requirement for all school districts that receive Department of Agriculture funding) was ranked the best in Connecticut, our efforts to improve the nutrition environment were cited by the federal Government Accounting Office and our success was instrumental in persuading the Connecticut State Legislature to pass bills setting standards for food and beverages served in the schools as well as expectations for physical activity. Our new Food Service director has received national attention for his innovative efforts to introduce healthier, locally grown fare and we have successfully applied for several grants to improve the food environment and opportunities for physical activity. The Committee's efforts have also inspired an unprecedented level of engagement from parents who have formed groups to work with it to address the issues of school food quality and opportunities for physical activity. The school-based teams originally formed to introduce and support more physical activity in the classrooms of our K-8 schools are now embracing a broader health agenda, mirroring the expansion of the focus of the district-wide Wellness Committee which is evolving into a Coordinated School Health Program on the model promoted by the Centers for Disease Control and Prevention.
The Board of Education is now beginning to work with CARE to align the latter's CIH Project with the work of the Wellness Committee that will support the school's nutrition and physical activity initiatives and the allow the schools to better measure the success of their efforts. It will also link these efforts to those that CIH is supporting in the neighborhoods, workplaces and health centers as it seeks to achieve a community-wide impact.
The New Haven Health Department (NHHD) has a proven track record of working collaboratively in the community and with Yale on individual programs. The New Haven Needle Exchange Program, for example, served as the model and provided the scientific justification for similar programs throughout the nation. Most recently they have been working with the Connecticut Association of Directors of Health (CADH) whose attention has been focused on the concept of 'health equity' and the development of a Health Equity Index as a community assessment tool. Through a major grant from the W.K. Kellogg Foundation CADH is helping local health departments incorporate this into their planning and programs. As they state:
"While vast inequities in health status, disease morbidity and mortality continue to exist and grow in Connecticut, no initiative statewide, and few nationwide, addresses the root causes of these health disparities. The underpinnings of this CADH initiative are grounded in the reality that health is an end-product of many social, political and economic forces that can create adverse conditions leading to illness. As a discipline dedicated to the prevention of disease, public health must look beyond the traditional 'behavior change' interventions and engage in efforts to eliminate economic, political, environmental and social injustices that are the root causes of inequities in health status."
The NHHD had already been working extensively in this area through its Community Solutions initiative where it partnered with CARE, the RWJ Clinical Scholars Program, Data Haven and others to undertake both quantitative and qualitative assessments of community needs and to develop a Data Atlas that would serve as the germ of a much more ambitious effort to understand the root causes of health outcomes in New Haven. The NHHD was the awarded a CADH grant to apply the newly developed Index by working with health department staff, local political leaders and an array of community partners to address the root causes of health inequities by embracing the role of social conditions in the improvement health for both individuals and the community. The NHHD seeks to use this broad-based initiative to create a Wellness Commission that will, through research, data sharing and analysis, programmatic innovation and policy recommendations develop and implement a comprehensive city-wide wellness agenda.
In addition, there are several other active partnerships that intersect with the ones I've described above, such as the Community Foundation of Greater New Haven's "Communities of Choice" initiative, the Yale-Griffin Prevention Research Center, the RWJ Clinical Scholars Program community projects, and the Yale Rudd Center's EAT Healthy New Haven coalition, that are all becoming increasingly aligned to pursue activities that will have a lasting city-wide impact.
I went into medicine and became involved in public health because I truly felt called to a service profession wherein someone could make a difference in people's lives. I have been fortunate enough to live and work in a setting that has given me the opportunity to pursue this dream in richly varied ways. I am more excited now than I have ever been that there is the chance to be a part of something that that could bring about meaningful change on a scale that I would not have imagined possible before.
New Haven has all the social, economic and health inequities that plague the rest of America, but it is a resource rich area that is small enough for people, if organized, to effect fundamental change. The present confluence of events here in New Haven represents a unique moment in history to redefine how we work together to solve our collective problems - much as is the chance nationally to bring about true health care reform. Never before have Yale and the City seen their twin destinies more intertwined nor have they had greater means to identify ways to work together toward realizing them. More importantly, however, there has never seemed to have been greater motivation to align their interests to the extent seen today. The NIH mandate to involve communities in a new partnership, the willingness of Yale to define this mandate in the broadest of terms, the groundwork for such collaboration that has been laid by the RWJ Clinical Scholars' community projects, the award to the New Haven Health Department of a grant to develop and apply the Health Equity Index model to the City and the desire by funders, even in such hard economic times, to support this partnership has generated among all concerned a level of optimism such as never before.
It has been said that a mind stretched to embrace a new idea never wholly returns to its former shape. The challenge is that in both the University and the Community there are a lot of minds that need stretching as community-campus partnering, whether in research, programmatic interventions or public health policy initiatives, is still a relatively new concept to most. Academe usually is not convinced of the value-added from engaging in true partnerships and community agencies often are too narrowly focused (and frequently too suspicious as well) for either to depart from business as usual. Often using community-based participatory research (CBPR) as a model for community/university partnerships, we have taken a multi-pronged approach. The Principles mentioned above were created as a foundational document to make the case for both why and how partnerships should exist. They in turn have been a focus of educational efforts and implementation strategies targeting both sides. By further identifying projects where the interests of the two align (as in the effort to create a practice-based network for the CTSA by supporting the practice improvement efforts of the local community provider organization or to roll out CARE's Community Interventions for Health project in the context of the City's Health Equity Index initiative and the Foundation's Communities for Choice project), we are creating the kind of synergies that are self-evident to all parties. All this is still in process and our gains could prove illusory if key players exit the scene, funding comes undone or still fragile alliances fray, but we've gone further down the path than ever before and on a good day, if you listen carefully, that odd sound you hear is of yet another mind being stretched.
What keeps me motivated in community service is the realization that the people I am trying to serve need help in so many ways that if I find that in moving forward on some project I have hit an insurmountable wall, I recognize that I cannot keep expending time and energy knocking myself out against it because I am too personally invested. Rather it is time to go back and take up another project and move it forward as far as I can so that at all times I am doing as much as possible to truly help. Do I get frustrated when an effort falls short? I'm no saint - of course I do, but I also find that situations change and I often can go back even years later and continue the work I was involved in earlier. As a fourth generation physician I was instilled with a sense that life derives its meaning from what we do for others and thus I count myself fortunate whenever I can make life a bit better for someone else.
In addition to the point above about keeping one's focus broadly on the needs of others rather than narrowly on the immediate problem at hand, I always loved the concept reportedly embodied by the Chinese ideogram for 'crisis' - that it was in fact comprised of the two characters for danger and opportunity. There are so many times when things seem to be falling apart and yet, whenever this happens there seems to be, amidst the carnage, some new opening where hope can lodge. I gave a talk at the Rudd Center at Yale last year describing the journey to bring about improvements in the school food scene, and as I prepared the presentation even I was surprised to recall how often crises had actually played to our advantage with opportunities coming from directions we would not have looked for.
Finally, I think that the kind of person most likely to be reading this is, like me, someone whose glass is likely to be at least half full and I think that recognizing our own good fortune and maintaining an optimistic attitude is one of the most important things we can do to keep our energies focused on the truly important task of helping others. It is too easy to think that we cannot, as individuals, make a significant difference, but as Robert Kennedy once said, "Let no one be discouraged by the belief there is nothing one person can do against the enormous array of the world's ills, misery, ignorance, and violence. Few will have the greatness to bend history, but each of us can work to change a small portion of events. And in the total of all those acts will be written the history of a generation."
Creating a partnership is not without its struggles, not the least of which is the inherent desire of each entity to be more concerned with its own agenda and, indeed, with its own survival. I will never forget at the annual meeting of the National Association of Community Health Centers during the Clinton health reform effort when Ted Kennedy told the assembly how profoundly disappointed he was that, after so many years of supporting them, they were so focused on protecting congressional support for their own program that they would not openly support a plan that would provide health care coverage for all Americans. People often express their admiration for visionary leadership, but all too often we fail to rise to the challenge such leadership asks of us.
There are many people currently who seem passionately committed to fundamental change in New Haven and as noted above there are several efforts seeking to bring this about. But such fervor can be transitory. A too-long economic slowdown, a change in the local political or university power structures, or even the moving on of a few key mid-level players could derail our efforts. Success will be assured only if we put the necessary structures in place to sustain change over time. To date, the regard in which public health is held in New Haven, and in Connecticut for that matter, is insignificant when compared to New York City or many other states and municipalities. It is my fervent hope that the new interest in working partnerships and, in particular, the new awareness of the two-way connection between health on one hand, and educational attainment and socioeconomic conditions on the other, will permanently change the political and social mindsets here and result in a robust public health infrastructure able to maintain a broad-based partnership to set and deliver upon a comprehensive community wellness agenda. That is what I dream will be written about the history of my generation here.
A fully realized community-campus partnership means a lot of things, but there are three ethical concepts that have not been adequately developed that I feel are paramount to our achieving this aim:
That the ethical considerations for relationships between academia and communities
are the mirror images of those that have been identified with regard to dealings
with human subjects - namely respect, beneficence and justice;
There is not enough time to fully develop concepts here, but I hope this will further the dialogue concerning them. Regarding the first, there are clear correlates between the rights of individuals and the rights of communities when they are engaged in research or in any other relationship where risks and benefits are at stake and where disparities may also exist regarding the power and resources of the partners. We presently have federal protections for human subjects in research situations and I believe that there should be similar protections built into the dealings with community partners, whether these are also enshrined in legislation or built into less formal processes such as the Institutional Review Board (IRB) review structure for research.
Regarding the second concept, this ethical obligation flows from the fact that both the resources that initially are deployed to conduct research, run a program or gather data as well as the time and resources that are requested of the community are essentially public resources. As a consequence, whether they are from foundations, government, or the community, the economic principle of 'opportunity costs' needs to apply. If these resources had been utilized in another fashion, might greater benefit have accrued? This is of particular relevance to community-campus partnerships because it creates the obligation to identify in the partnership all that can contribute to its success. It means that it is ethically untenable to ignore the value to be derived from the community's input and thus that fully engaging the community from the very start of the endeavor and in all aspects of it is necessary if its full potential is to be realized.
Lastly, it is not sufficient to merely say we are extending these protections and offering these benefits to the community. Isaiah Berlin noted that,
"To offer political rights, or safeguards against intervention by the state, to men who are half-naked, illiterate, underfed and diseased is to mock their condition What is freedom to those who cannot make use of it? Without adequate conditions for the use of freedom, what is the value of freedom?"
I believe that there is a direct correlation to what we are trying to achieve when we endeavor to forge fully realized community-campus partnerships and what Berlin speaks of in referring to the creation of a genuinely free society. Issues of education, empowerment, organization and resources must be addressed so that ultimately the capacity for the impetus for and/or leadership of a particular endeavor might originate with either party.
In Yale's Principles and Guidelines document referenced above we are laying the groundwork to establish this kind of ethical framework for all our community-campus partnerships. In May we held a conference on the ethics of community-based participatory research and have released the proceedings report. We have also joined in a project with Duke University to review and revise the CDC's guidance in this area. Hopefully these ethical concepts will become firmly rooted in these institutions and agencies and inspire change around the country.
It has taken far too long and the suffering of far too many people for this nation and the world to recognize and protect the dignity and rights of individuals in the various Reports and Declarations that now exist. For too long we looked the other way or unjustifiably put our faith in what we perceived was the inherent goodwill of science, government or other entities. With this precedent in place and with our growing appreciation that communities, as collections of individuals, need to be afforded the same protections, I would ask that we not wait for further suffering on their part before we to enshrine these same rights for them.
I stumbled upon CCPH when it was getting started in San Francisco and was immediately impressed both by the uniqueness of its mission and the creativeness and energy with which it has pursued it. These are, in fact, what make it most valuable for there simply is no one else out there making this case so cogently, so broadly or so passionately. This is also how I have described it to my colleagues when I have urged them to get familiar with its work and join up. I find that I am constantly forwarding items or ideas to colleagues from the various listservs or the web site and, like I need more to do, getting drawn into new activities like the effort to work with the CTSA's Key Function Committee as it develops its concepts of community engagement. [Editor's Note: CCPH members that are involved in CTSAs have formed a CCPH-CTSA interest group that has been meeting monthly by conference call since March 2009. Email us to learn more.]
I'd like to think I bring a lot of the same energy and creativity to the organization that it is already so well known for as well as a convert's zeal to spread the word to others and get them involved, or at least thinking about the important issues that CCPH is addressing. In particular I'd like to think that being a part of it is helping to draw the partnerships that I am affiliated with in New Haven into the CCPH sphere of influence and in return making the resources that are developed here available to others through CCPH.
As Antoine Saint-Exupery said, our task is not to foresee the future, but to enable it. For CCPH that obviously means weathering its current transition and re-establishing itself with the leadership and resources that will enable the future we hope for. In this I hope that everyone will be willing to do what they can and that those who now most bear the burden will not hesitate to reach out and ask the rest of us for help.
The true mark of success is that we won't be needed anymore. Somehow I don't think that will be the case in ten years, but it would be my hope that the focus would have moved from getting the principles of community engagement recognized to an ever-evolving focus on how we can maximize the benefits derived from genuine community engagement.
Stephen Updegrove, MD, MPH
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