Developing New Systems of Data to Advance a Culture of Health

Abstract

Introduction:

The system dynamics that are driving changes in health and health care in the United States are not well captured by standard data-collection activities. We need data systems that can inform policy and program development and can reflect the increasing recognition that all aspects of people’s lives—their work, families, and communities and not just formal health and health care services—support active and healthy living.

Culture of Health Action Areas:

Within the Culture of Health (COH) framework, four action areas are further upstream in the sequence of change and point to additional need for more nuanced approaches to data collection: building a shared value of health; fostering collaborations to improve well-being; creating health in more equitable community environments; and transforming health and health care systems. These action areas define the COH framework that we hope will spur research and strategies across sectors to improve health.

Conclusion:

The action framework for advancing a COH will guide the Robert Wood Johnson Foundation’s (RWJF) grant making and strategic collaborations. It is hoped that the framework will also catalyze changes in how researchers and organizations collect health-related data at all levels.

Introduction

The system dynamics that are driving changes in health and health care in the United States are not well captured by standard data collection activities. While we know that Americans’ health has been unequally influenced by income, education, ethnicity, and the contextual nuances of where they live, existing health- and related demographic data systems poorly measure the interactions of place with well-being outcomes. Data describing our health care systems are generated largely within those delivery and payment systems, and are not connected with either population level data or more granular community data. We need data systems that can inform policy and program development and can reflect the increasing recognition that all aspects of people’s lives—their work, families, and communities and not just formal health and health care services—support active and healthy living.

The research frameworks and academic disciplines developing new approaches to improving population health and to understanding the social determinates of health with more granularity require a new direction from agencies responsible for funding and supporting data collection at the federal, state, and local levels. Data collection frames that reflect only the most conventional morbidity and mortality measures and have imbalanced assumptions on the role of health care services on population health outcomes must broaden their scope. State and local data become increasing important if we are to understand the range of factors that make a person’s ZIP code a primary indicator of health. A growing number of communities, regions, and states are working to redefine what it means to get and stay healthy, and are addressing social and physical spaces as well as the conditions in which people live, learn, work, and play. These engaged residents and collaborative researchers could be better supported in their health improvement work if more readily available and integrated systems of local data were available. Coordinated efforts to promote wellness and prevent disease are proliferating among a diverse set of stakeholders, including organizations that are traditionally non–health focused, like community developers and architects. New sources of data derived from business and corporations are required in order to understand current challenges and the impact of cross-sector collaborations in improving community health. And “big data”—large, varied data sets that are available in real or almost-real time—will make it possible to analyze health patterns in unprecedented ways to gain a clearer picture of the actionable determinants, trends, and outcomes of societal health and well-being. Expanding research partnerships to incorporate these new data sources to strengthen computational social science would certainly improve our understanding of the complex contexts that shape population health.

A Culture of Health (COH)

Current and future developments in health and in society present a window of opportunity and an imperative for researchers to bring innovative approaches to data collection and analysis and to focus their studies in order to assist a broader understanding of the impacts and challenges of transformations that result from an increasing focus on population health and social determinates. There is a chance to disrupt the status quo; to close gaps rather than simply measuring health disparities; and to build the evidence to catalyze a national movement that demands and supports a vision for a COH that can replace the siloed approach to health and health care. The nation needs enhanced systems of data to guide this movement.

In its annual message, Building a Culture of Health,2 the RWJF proposes a new vision that addresses what all Americans can do to improve collective well-being. We intend to help build an evidence-based national movement to create a COH that enables all members of our diverse society to lead healthy lives—now and for generations to come.

The 10 principles underlying our vision for a COH present a framework for understanding population-level health that should advance the integration of health and health systems with community and other organizational sectors. Clustering the 10 principles into four action areas that can be measured, and showing how the principles relate to each other, suggests the types of data required in order to understand how to drive systemic improvement in the COH. We believe that this action framework also requires extensive new research and program evaluation approaches to refine and test proof of concept, and we are launching new funding opportunities to support this.

Of the foundation’s 10 COH principles, the following 4 principles describe long-term outcomes for the nation’s health and health care systems:

• Optimal health and well-being flourish across geographic, demographic, and social sectors;

• Everyone has access to affordable, high-quality health care;

• No one is excluded; and

• The economy is less burdened by health care spending.

Achieving these outcomes requires special attention to equity and social justice—not to merely describe the health disparities that exist in society but to eliminate them. Data systems are sorely needed that support research that improves our understanding of how we close these gaps and how we change the odds for achieving healthy lives for marginalized populations.

The remaining 6 principles fall into four action areas that are further upstream in the sequence of change and that point to an additional need for a more nuanced approach to data collection. These action areas define the COH framework that we hope will spur research and strategies across sectors to improve health. It is also the framework that will guide all RWJF work. We have selected or developed 41 measures across the action areas as key indicators for the type of changes required to improve well-being and improve health equity. This report is in process and will be released in May 2015.

Action Dimension 1: Building a Shared Value of Health

This area of work focuses on actions that set the context for widespread dialogue about and understanding of a COH. We prioritize better data and measures in order to understand what it takes to build a shared value of health, because individuals must view health as a priority. Data are needed that allow for an examination of the role of social cohesion so that individuals feel a sense of community and believe they can be part of collective actions to improve population health. It’s hard to convince people who don’t have a shared sense that we are all in this together that good health is as important for all as it is for those who are ill.

The conceptual base for this action dimension rests on research and practice evidence in social network theory, community resilience, well-being science, and asset-based community development. This is the most critical area where existing data and measures fall short, and our research suggests three important areas (“drivers”) where more data and analysis are needed.

Drivers in Building a Shared Value of Health

Mindset and Expectations

The views and expectations we have about health ultimately inform the decisions we make as individuals, communities, and as a nation. Do we feel empowered to make healthy choices in our daily routines? Do we expect health to be prioritized in our policies? Do we understand that our health affects the health of others and vice versa? Very little national or local level data exist on this driver.

Sense of Community

Research suggests that individuals who live in socially connected communities—with a sense of security, belonging, and trust—have better psychological, physical, and behavioral health, and are more likely to thrive. If people do not see their health as being interdependent with others in their community, they are less inclined to engage in health-promoting behaviors or to work together for positive health change. This is a very important area that receives little attention in existing health data systems.

Civic Engagement

Civic engagement creates healthier communities by developing the knowledge and skills to improve the quality of life for all. Measures could help us understand whether Americans feel motivated and able to raise their voices and make a difference.

Action Dimension 2: Fostering Collaboration to Improve Well-Being

We need data to better understand changing approaches and processes that improve the connections of traditional health delivery settings with the community settings that influence residents’ health (e.g., neighborhoods, schools, and businesses), so that all organizations’ assets, policies, and practices (1) promote the health and health care of entire populations; (2) promote health and health care equally; (3) are aligned across sectors; and (4) operate together rather than in isolation.

The conceptual and research bases for this action area are studies of effective cross-sector partnerships among hospitals and other health care institutions, public health agencies and providers, health care payers and consumers, education, government, business, and community-based organizations that improve local well-being. We intend to highlight where new data collection and research can support innovative partnerships and their impact on improving the social, cultural, and environmental determinants of health and reducing health disparities.

Drivers in Fostering Collaboration to Improve Well-Being

Enumeration and Quality of Partnerships

Research indicates that building relationships among partners is the most challenging aspect of creating change, and that leadership is particularly important for cross-sector synergy. Other key factors include establishing a history of collaboration between organizations, ensuring that participants have the resources they need, and building a sense of shared accountability. We need measures for assessing the effectiveness of our partnerships and the integration of healthy practices in schools, workplaces, and other settings where well-being can flourish or falter.

Investment in Cross-Sector Collaboration

In addition to measuring the quality and quantity of cross-sector collaborations, it is important to track investments that support these partnerships. Corporate and federal contributions have the power to have an impact on our nation’s health and well-being, both directly and indirectly.

Policies that Support Collaboration

Policies can play a key role in encouraging and maintaining collaboration across sectors, as well as in creating incentives for different sectors to contribute what they can to the cause of improving our nation’s health. Measures that clarify which policies have the potential to catalyze widespread improvement in health and overall well-being are needed.

Action Dimension 3: Creating Healthier, More Equitable Community Environments

We need data that better reflect the complexity and systems dynamics required for improving well-being and, correspondingly, eliminating disparities in health so that the ZIP code in which one lives does not indicate an increase in one’s likelihood of experiencing poor health outcomes. In a strong market economy such as that of the United States, poverty and economic marginality often lead to inequity in health and health care. Current data systems measure the impact of inequity but are limited in supporting the understanding of the interrelated pathways that lead to it.

We need data that build a science around what policies and practices actually and measurably advance healthy environments within and across populations. At the individual and family levels, we need data that measure the extent to which there are equal opportunities to live in homes that are safe—from social threats such as violence and from environmental threats such as lead paint, poor air quality, blight, and general disrepair—and in neighborhoods that offer access to nutritious and affordable food, recreational facilities, elements that encourage active transport (e.g., sidewalks, bike trails, pedestrian crosswalks), and healthy school environments.

We intend to measure and promote new measurement approaches to evaluating strategies to improve physical activity, healthy food and diet, and healthy environments.

Drivers in Creating Healthier, More Equitable Community Environments

Built Environment and Physical Conditions

The built environment—the physical space in which we live, work, play, and learn—plays an essential role in a community’s well-being. For example, sidewalks in good condition and active transport routes, such as bicycle lanes, are features of the physical environment that may provide greater access to exercise and healthy food options.

Social and Economic Environment

The social environment—including relationships with family, friends, and neighbors—plays a key role in the choices we make and the actions we take regarding our health, such as smoking, drinking, and exercise. Other factors, such as enduring racial and socioeconomic segregation, can also influence health and have an impact on a community’s sense of trust and cohesion. In addition, research points to strong connections between our environment, economic vitality, and health. These are all important areas for improved data collection.

Policy and Governance

This area highlights developing measures that track policy changes aimed at creating healthy environments, with an emphasis on collaboration between residents and large institutions—both governmental and corporate. Too often, we see health-promoting initiatives fall short without the policy structures in place to sustain them.

Action Dimension 4: Transforming Health and Health Care Systems

We need much better data that allow the nation to track progress around integrating health care, public health services, and systems to achieve the following: (1) improving equitable access to health care that is high quality, efficient, and affordable; and (2) reducing systemic, avoidable barriers to equitable health care. Just as research has documented the growing disparities in health, an equally broad base of research has documented the continuing challenge of access and coverage. By linking data on preventive services more systematically with data on medical care, for example, we better understand how some chronic illness can be avoided or postponed. By linking data on health care and health improvement services to data on community resources such as community-based organizations and consumer groups, transitions in care can be tracked so that individuals might avoid hospital readmissions and can better manage chronic illness. By collecting data that measure patient wishes more systematically and with cultural competence, health care systems can better understand how to activate patients to participate in their own care.

Drivers in Transforming Health and Health Care Systems

Access

Many factors influence access, including the expansion of health insurance coverage. But access must be seen as more than having insurance. It must be more broadly defined and measured as being able to get care when it is needed, and having the opportunity and tools to make healthier choices.

Consumer Experience and Quality

Frustration with the health care system has become far too common. Appointments can be hard to get, forms and paperwork may be confusing, and family members and other caregivers are often excluded from the process. Better measures that can guide improvement in consumer experience and that suggest more effective strategies for improving quality and value in health and health care services are needed.

Balance and Integration

A COH calls for better balance between prevention and acute-and chronic-care services, as well as the intentional integration of public health, social service, and health care systems. Systems analysis and evaluation designed to improve efficiency and quality of care delivery that lead to reduced hospital readmissions, decreased health costs, and a more seamless health care experience are needed.

Conclusion

The action framework for advancing a COH will guide the RWJF’s grant making and strategic collaborations. We hope it will also catalyze changes in how researchers and organizations collect health-related data at all levels. Our new COH Investigators Award program, the alignment of our public health services and systems research funding with the COH strategy, and the expansion of our public health law research program to more broadly build a science of health in all policies are only three examples of expanded opportunities to fund new data-collection approaches and research that will help refine and improve the action framework. Two new national programs from our “human capital” area will provide fellowships and multidisciplinary training and research opportunities for researchers in different stages of their careers. The foundation will launch a National Sentinel Communities Study later this year, 2015, that will examine the validity and utility of the COH action framework, drivers, and initial measures in 30 diverse communities over the next five years. Finally, a new website will be launched in the fall of 2015 that will connect all of our major data repositories and national measurement activities in an accessible and user-friendly environment.

Our new research programs will also expand the evidence base for improving health and well-being through multisectoral partnerships. We will engage leaders in the public and private sectors to recognize and seize opportunities for expanded data collection and collaborative data sharing agreements. Establishing new norms and expectations for collaboration, building knowledge and capacities, and promoting practices that connect data collection and analysis with a leadership role for community residents who experience inequitable health outcomes will be major focuses of our research program.