Science, Collective Responsibility, and Informed Social Action for Health
Member Dr. Mark DeHaven is Professor and Chief
of the Division of Community Health Sciences in the Department of Clinical Sciences
at the University of Texas Southwestern Medical Center at Dallas. Guided by his
understanding that most health-related suffering is preventable and unnecessary,
Mark and his team are developing and refining innovative community-based participatory
research (CBPR) models and programs for improving health outcomes and life chances
among those at greatest risk of preventable disease. Currently, Mark is engaged
in a faith-health collaborative, GoodNEWS (Genes, Nutrition, Exercise, Wellness,
and Spiritual growth), which is funded by a 5-year grant from the National Heart,
Lung, and Blood Institute. Through the collaborative relationships and partnerships
his Division has developed over the past ten years, GoodNEWS is collaborating
with African-American congregations who are committed to better understanding
the true causes of disease and developing means for eliminating disease causality.
Beginning in about 1995,
I established my first medical school - based division or department devoted to
community health. Since then I have established a successful division of community
medicine in a department of family and community medicine, and I am currently
developing a new division called Community Health Sciences. Although the specific
details change, in each case our mission has been consistently the same - we are
"dedicated to preventing and reducing the disproportionate burden of disease
affecting vulnerable communities, improving life, and developing appropriate and
effective models for improving health in all communities." We are guided
by the understanding that most health-related suffering is preventable and unnecessary.
Through community-based participatory research (CBPR) - working with communities
rather than merely in communities - we seek to develop replicable models
for understanding health and disease determinants, and supporting mechanisms for
promoting healthier life for individuals, families, neighborhoods, and communities.
Most of us would agree that suffering, or experiencing pain or distress, is a normal part of living. We know this from our personal experience and as health professionals we encounter suffering as a routine part of our daily work experience. As a community health researcher and division chief in two major cities I have observed suffering in the form of persistent chronic and acute disease among predominantly employed low-wage earners and minorities residing in the inner city. Frequently living from one paycheck to the next, economically vulnerable individuals and families are victims of a form of health-related suffering euphemistically called "health disparities." Examples of health disparities are, for example, that Native Americans are twice as likely as whites to develop diabetes, that Hispanics are twice as likely to die from diabetes, and that African Americans have a 40% higher death rate from heart disease.
The causes of health disparities are complex, and are related to a broad range of social, environmental, individual behavioral and genetic factors. However, by and large they tend to be a reflection of the social inequalities found throughout our society. The case of health insurance is illustrative. In the United States, health care is rationed to individuals based on their ability to pay. On one end of the continuum are those who are relatively well off financially and who receive access to the best health care in the world, while on the other end of the continuum are the more than 46 million uninsured adults between the ages of 18 and 65 years who have no health insurance coverage at all. More than 80% of those without insurance are in working families with many making less than 200% of the poverty level. Minorities are much more likely to be uninsured than are white Americans; about 37% of Hispanics, 25% of Native Americans, 22% of African Americans and 20% of Asian Americans are uninsured compared to about 12% for whites. The uninsured are less likely than the insured to receive preventive care, three times more likely to postpone seeking care because of cost, four times more likely to not get care when needed, three to four times more likely to report problems receiving needed care, more likely to be hospitalized for preventable conditions, and more likely to be diagnosed with late stage cancer.
There is little doubt that access to care based on ones ability to pay contributes to systematic health disparities in the United States among those with fewer financial resources. These circumstances are exacerbated by ever increasing levels of poverty, increasing levels of chronic diseases such as heart disease, hypertension, diabetes, and obesity, and an endangered health care safety net for the poor. When I look at the level and type of suffering that exists throughout our society and the world, I know that in an abstract theoretical and spiritual sense, we all suffer in this life and in this sense suffering is normal. However, when a society that values equality and the dignity of human life, systematically deprives some of its citizens of equal access to that life by placing them at significantly increased risk of disease, diminished quality of life, and reduced quantity of life, then the burden of suffering is vastly unequal. Under conditions of extreme inequality in life chances, and when the costs of suffering affect some groups of people disproportionately more than other groups, then not only are the circumstances not normal, but they are also immoral and unjust.
By far the biggest challenge we have faced is convincing others beyond our immediate circle to understand - and embrace - the value and need for implementing broad-based health promotion and disease prevention models, throughout the medical system and our society. We have written about these models, spoken with government and business leaders, worked with foundations, and been active throughout the medical community - but very little has changed since starting this work more than fifteen (15) years ago. The community health science approach we have been developing exists at the intersection of clinical medicine, public health, and social science. Clinical medicine concentrates on individuals, seeking to diagnose, treat, and prevent disease by maximizing the health and functional capacity of the individual. By contrast, public health concentrates on populations, seeking to maintain the health of all people through actions taken collectively. From a community health science perspective, clinical medicine and public health alone cannot create health, although they can contribute to developing effective prevention and treatment programs. Rather, in order to be effective in creating health, clinical care and epidemiology must be linked to community organization. That is, although treating disease requires the application of medical technology, the actual creation of health is based on the application of social technology. Accordingly, health is best seen as a social outcome resulting from a combination of clinical science, collective responsibility, and informed social action. Getting leaders in positions of authority throughout our society to understand the need for creating (and supporting financially) means for promoting health and preventing disease - rather than supporting a system based solely on treating chronic diseases that are largely preventable in the first place - continues to be a significant challenge.
We continue to develop and propose our integrated community-based participatory approach as a solution to addressing the country's increasing prevalence of chronic diseases and rapidly escalating health care costs. It is doubtful that the present health care delivery system and related funding mechanisms can be sustained much longer; not only does the system contribute to escalating levels of chronic disease and inequitable health outcomes, but it is becoming too expensive for employers and those traditionally receiving health benefits. Our new Division of Community Health Sciences is refining an approach to promoting health and reducing disease, by focusing on reducing the risk factors for disease. In September 2007, we received a 5-year grant from the National Heart, Lung and Blood Institute for expanding our faith - health collaborative program GoodNEWS (Genes, Nutrition, Exercise, Wellness, and Spiritual Growth), to see if we can meaningfully affect lifestyle change and reduce clinically relevant risk factors for cardiovascular disease. We have developed extensive collaborative relationships and partnerships throughout the Dallas community during the past 10 years. These relationships are based on trust and a common mission to improve life in our communities. Our work has allowed us the privilege of collaborating with African-American pastors and congregations throughout our community who are committed to better understanding the true causes of disease and developing means for eliminating disease causality.
In terms of the many factors which continue to motivate and sustain me in overcoming the challenges which accompany this type of work, three stand out: my faith, my colleagues and students, my community collaborators and participants. My deep and abiding faith and confidence in God is the first and most important source of inspiration for me. My faith reminds me constantly of the good inside of every person and that every person deep in their hearts seeks to do what is right. I frequently perceive my role as being a person who creates opportunities and reminds others who may not be thinking of the other person (along with reminding myself), of what the right thing is related to the health needs of the least fortunate. I know that life is confusing and that choices are not always easy when resources are scarce. However, I also know that every faith tradition with which I am familiar - whether it is Christianity, Judaism, Islam, Buddhism, or others - embraces the common theme of love for our neighbor. My faith reminds me constantly to remember my neighbor, to forgive myself and others when we do not always do well, and to continue to seek the greater good for all of us in every situation. Much of my work actually occurs in the faith-based setting, since I have been working in faith communities developing a faith - health approach to preventing disease since about 1994. I have had the great privilege of collaborating with churches, pastors, and congregations throughout the United States and parts of Central and South America, and have seen the power of faith to sustain people's hope when nothing else is left. By actively witnessing the power of faith in so many different situations, my own faith has grown.
A second significant motivator for me has been the students and colleagues with whom I work daily through our research and training programs. There has been and continues to be a significant and growing need for physicians who are trained in providing compassionate and culturally sensitive care to our society's most vulnerable citizens - the poor, the uninsured, the elderly, and those suffering from persistent health disparities. I have long thought that by training the present generation of medical students in population health principles, health promotion and disease prevention, social determinants of health, and community-based participatory research (CBPR), we will be able to begin creating a foundation for controlling the epidemic of chronic disease and disparities in health outcomes, that are disproportionately present among ethnic and racial minorities, the poor, and the uneducated who reside in underserved communities.
Through very generous and significant funding from the Health Resources and Services Administration (HRSA), I have had the great privilege of developing several innovative service-learning training programs for medical students. In 2001, for example, we created a Community Health Fellowship Program (CHFP) and a longitudinal Community Action Research Track (CART), that provide students with the tools and knowledge they need to become informed and effective leaders in community health. The hundreds of medical students who have participated in these programs are a constant source of inspiration to me. I recently cleaned out my office in preparation for moving to create the new Division of Community Health Sciences. From among the treasures I had accumulated in an office I had occupied for almost a decade - consisting of grants, community awards, publications, and many other significant mementos - the thank you notes I had received from students over the years were by far the most moving and arguably the most valuable items in the office. Students shared with me their deep feelings that our programs had opened their hearts to who they were and wanted to be as compassionate physicians, reaching out to those in need and sharing the love they felt for people through their community-based medical work. Some people have a skewed perspective on medical students today, believing that many students are only seeking specialties that promise great financial incentives. However, this is not at all true of the students with whom I work - they actively seek ways to give back and reach out, but - unfortunately - many medical schools do not provide these types of community-based training experiences as part of the training curriculum. Medical practice in the 21st century will require new community-based approaches for promoting health and preventing disease. If medical schools incorporate community-based disease prevention and health promotion opportunities similar to the programs we have developed, I am confident that these compassionate young physicians would transform the way we think and do about health in our country. These students and the colleagues with whom I have worked to develop these types of training experiences, are a constant source of inspiration for me.
The last, but certainly not least, source of inspiration for the work we do is the support of our community partners and the individuals who participate in our programs. Many years ago I visited a church in Fayetteville, North Carolina to speak about the role of congregations in preventing disease and maintaining the health of the congregation members. It was the first time I ever heard the words that have since become a constant refrain, "Dr. D we are sick and tired of being sick and tired." Health maintenance has become extremely complex in the lives of many people. Even people with financial means and high levels of education frequently do not know how to keep healthy these days in our modern, fast-paced, and stressful society. The health needs of those in underserved communities are even more complex, given the lack of insurance, unsafe living conditions, and lack of access to affordable and healthy foods. Yet, I have found tremendous assets among our collaborators and tremendous optimism. All of our partners without exception work toward the good of the entire community, generally putting their own selfish needs and desires aside. Our community health team has a tremendous privilege in showing people that they do not need to be sick and tired all the time. Although many in medicine believe that health promotion and disease prevention is notoriously unsuccessful, our anecdotal experience demonstrates otherwise. We have seen people in very trying economic and community circumstances lose large amounts of weight, change their eating habits, begin to appreciate nature and their surroundings, and become advocates of health among their neighbors, family, and friends. With the recent support we received from the NHLBI for conducting a five-year clinical trial for reducing risk factors for disease, we hope to show that our community campus faith and health approach can contribute to successful lifestyle change and improved health outcomes. This work is only possible because of the faith, trust, openness, and unselfishness of our community partners and those who participate in our programs. We are grateful to each one of them, for their constant encouragement and support, and for the way their generosity sustains and motivates our team.
Many years ago a trusted and learned person advised me that it would not be possible to build a successful career based on developing community-based approaches to health promotion and disease prevention. Although I wanted desperately to follow this persons advice, in my heart I knew what was right for me and it was not the path that he was recommending. I saw injustice, unnecessary disease, and diminished well being, all created by a complex set of social circumstances well beyond the medical or health professions context. I did not follow the advice of this mentor, realizing that I saw something different in my heart - I saw something that I needed to do. The only real advice I can offer anyone is to follow their own heart, for even if it appears to the world that we are not successful, we are still working for that which we know to be important. In my own case, for example, I am never really certain of the true value of my efforts or whether they are having a meaningful affect on improving people's lives - only time will tell. However, Robert Frost wrote in The Road Not Taken that " . . . two roads diverged in a wood, and I - I took the one less traveled by, and that has made all the difference." Myles Horton, the founder of the Highlander Center, once wrote that we should not choose a goal that is achievable in our lifetime, but that we should choose the "highest" vision and then just hack away at it. Each one of us has to decide for ourselves, what is important to us and then choose that path, without turning around and without turning back. Each path is fraught with obstacles, challenges and dangers. However, on the journey we meet others - others with a similar heart or purpose - and in the process we find out who we are ourselves. We only meet these others and discover our true destiny when we follow the calling that each one of us alone can hear.
More than anything else, I think I am grateful to every single person who has placed their confidence in our work - and especially our core team who gives so much of themselves to our work. For their sake and the sake of all of those for whom and with whom we work, I have long dreamed for the funding to establish an endowed Center for Health and Human Life Improvement. The Center would provide training to health professionals and community members alike, for health promotion, disease prevention, and community health improvement. The Center would build significant capacity for conducting research on the most effective means for reducing risk factors for disease using a community-based participatory research approach, and recognize the need for addressing the full range of health domains including the physical, mental, intellectual, social, environmental and spiritual. The Center would be transformative and translational - taking what we have learned from bench and clinical sciences, translating it to the community, and reorganizing health care delivery to embrace more of an emphasis on preventing disease through health promotion.
A friend of mine describes partnership this way: when people come together for a purpose and take all of their resources with them at the end of the meeting, this is called collaboration; however, when people come together and leave their resources on the table at the end of the meeting, this is called partnership. Community-campus partnership to me is genuine sharing, where communities and - in my case - a medical school come together with a willingness to share for the purpose of achieving a common good. This process leads to discovery, the development of bonds of trust and friendship, and the hope of a lasting resolution of community health problems and genuine change.
Creating a health care system in the United States -
rather than a disease care system - requires a more realistic distribution
of health care resources, one that moves beyond the current distribution of 95%
devoted to treatment and 5% to prevention. The approach should be based on addressing
the population's primary prevention needs through health promotion, improving
the ability of primary care medicine to address secondary prevention, and reducing
the need for expensive and often avoidable hospital-based tertiary prevention
services. Innovative models for integrating primary, secondary, and tertiary prevention
abound in places where health care resources are limited. For example, in response
to the growing health care crisis among the working poor, communities across the
United States have established free and volunteer clinics as a means for providing
care for those in need. This growing "non-system" is fast realizing
that without access to conventional sources of health care funding, care delivery
must focus less on treatment and more on prevention. Similarly, financially-strapped
developing countries such as Mexico, have been forced to develop approaches for
reducing the demand for expensive medical care. The Programa de Desarrollo Humano
Oportunidades, for example, was designed to meet the health needs of the uninsured
by combining what is known about disease treatment outside of the community (medical
technology) with what is known about health maintenance within a community (social
Finally I would share that not only does prevention work, but it is the right thing to do! Illness in an individual is merely a reflection of the pattern of disease in a population and is influenced by genetic, environmental, and social causes. Thus, in order to successfully treat individual patients, it is necessary to diagnose and understand the factors in the community that are related to the causes of disease. If lack of insurance, poverty, unsafe living conditions, crime, environmental contamination, or other factors are contributing to illness and disease, then it is necessary for all of those engaged in health to collaborate with one another in order to remedy these conditions. Our community health science model seeks what has been called statistical compassion, or a more equitable distribution of disease burden free of distortions based socio-demographic factors. Thus, a community health approach recognizes that the factors contributing to health are largely beyond the reach of traditional medical practice and the individuals who are suffering from the preventable diseases. Rather, the solutions exist in the combination of clinical practice, epidemiology, and informed social action based on rational, enlightened, and compassionate policies.
I became a member of CCPH when it was first established. Although I have not been active in the organization's leadership, I am always grateful for the tremendous educational efforts and support provided through the organization. Before CCPH there was no organization or means available for educating, guiding, or collaborating across disciplines and institutions for the purpose of supporting service learning or collaborative community-based approaches to education and program development. CCPH has placed service learning, CBPR, and community engagement in the national spotlight, and for those of us who are practitioners of these approaches, the advocacy, education, and coordination performed by CCPH is invaluable and absolutely essential for our success.
I have been successful in developing community partnerships, and in obtaining funding for community-based research and training. I have received funding from numerous foundations, the Health Resources and Services Administration (HRSA), the Centers for Disease Control and Prevention (CDC), and the National Institutes of Health (NIH). As the Community Engagement Key Function Director at my institution for the Clinical and Translational Sciences Award (CTSA), I hope to work with others throughout the nation to expand our knowledge of community engagement and to further support the issues that are important to CCPH, our varied membership, and the communities we serve.
With the transition of leadership from Sarena Seifer to Cheryl Maurana, I hope to see the same level of phenomenal success achieved during the next ten years, as we have seen during the past ten years. Both of these leaders are exceptional, hard working, creative, knowledgeable, and talented visionaries for community engagement. I am especially hopeful that research becomes more prominent in the organization, so that we can test and develop truly generalizable methods and means for community health improvement based on collaborative and participatory approaches. The nation will need this evidence as we seek to improve the health of our communities in the 21st Century.
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