PatientsChartingCourse

one case definition for public health, two (numerator and denominator and maybe exclusions) for quality reporting, and four (i.e., a 2 × 2 table) for much of clinical effectiveness research and drug discovery.

Next Steps

Throughout its work, ONC needs to consider opportunities to streamline data needs and create limited but multifunctional shared elements of a unified HIT infrastructure. These actions can include identification of overriding policies and principles, such as those discussed above (“­architecture”); establishment of basic, shared infrastructure (standards, services, directories, terminologies, value sets); development and deployment of common tools (e.g., CONNECT, National Health Information Network [NHIN] Direct, popHealth); demonstrations (e.g., Beacon Community Program); research (e.g., the Safety and Health Achievement Recognition Program [SHARP]); and coordination across federal agencies. ONC looks forward to receiving the input of all stakeholders and to making progress on these critical issues. How much progress the nation will make depends on our collective ability to start simple and work together.

OPENING ACCESS TO HIGH-VALUE DATA SETS

Todd Park

Department of Health and Human Services

Across many industries, opening access to and encouraging the use of quality data has driven dramatic innovation and performance improvement. Recognition of data’s transformative potential is reflected in the Open Government initiative launched by the Obama Administration in 2009, which seeks to enhance the efficiency and effectiveness of the public sector through improved transparency, public participation, and collaboration. The vast stores of data captured by HHS agencies, for example, are an important national resource for enhancing the value, science base, and patient­ experience of health care. The creation within HHS of the position of Chief Technology Officer—whose mission is to leverage the power of data, technology, and innovation to improve health—and the development of an HHS Open Government Plan signal HHS’s commitment to the principles of open government and to playing a catalytic role in the development of a learning health system.

Open Government

Fostering the development of open government is an important means of improving government efficiency and effectiveness and ensuring public trust, and is an ongoing priority of the Obama Administration. Almost immediately following his inauguration, the President issued a memorandum to heads of Executive departments and agencies outlining key principles of open government—transparency, public participation, and collaboration.1

•Transparency means publishing data with the intent of improving government accountability and enabling citizens to access and use data in ways that are socially beneficial.

•Public participation means welcoming and accessing widely dispersed national interests and expertise to help the government better accomplish its mission of improving the well-being of the American people.

•Collaboration means the federal government will work effectively across agencies; with state and local governments; and with others outside of government, such as nonprofits, advocacy organizations, business, and academia.

Collectively these principles reflect the reality that the challenges and opportunities facing the United States are so complex that no one organization, regardless of how capable, ingenious, or well funded, can possibly address them alone. Instead, efforts are needed to improve the availability of data; to engage a broad spectrum of talent and expertise in the use of these data; and to support the work, across all sectors, needed for meaningful progress.

A Presidential memorandum led to an Open Government Directive issued by the Office of Management and Budget (OMB),2 which required all federal departments and agencies to take steps to better support and implement these principles. Key opportunities outlined by the directive include publishing government information online, improving the quality of government information, creating and institutionalizing a culture of open government, and establishing an enabling policy framework for open government.

In response to the OMB directive, HHS developed an Open Government Plan, which outlines immediate opportunities to improve access to data and to provide a means for their use in accomplishing HHS’s mission

1  See http://www.whitehouse.gov/the_press_office/TransparencyandOpenGovernment/ (accessed October 11, 2010).

2  See http://www.whitehouse.gov/sites/default/files/microsites/ogi-directive.pdf (accessed October 11, 2010).

BOX 3-1  Continued

•A major push to assess current HHS operations in support of the Freedom of Information Act (FOIA), identify and prioritize improvement opportunities, and define a roadmap to implement the improvements [FOIA Excellence]

•Expanded opportunities for public participation in HHS activities and for collaboration across HHS and with the world outside HHS—especially via the use of new information and communications technologies. Through a new HHS “Community of Practice” for Participation and Collaboration, Open Government innovators at HHS will be able to network with each other, share learnings and best practices, compile these best practices into an HHS “workplace menu” of participation and collaboration tools, compare the efficacy of different approaches, and work together on common issues. The Community of Practice will focus in particular on the advancement of innovative mechanisms for participation and collaboration at HHS—mechanisms that apply blogging, “crowdsourcing,” group collaboration, idea generation, mobile, and on-line challenge capabilities to key HHS activities:

—Medical research collaborations—e.g., via the application of “crowdsourcing”­ and innovative patient engagement approaches to research on diabetes and women’s health issues

—Collaboration among HHS employees—e.g., via work by the Office of the Assistant Secretary for Planning and Evaluation to research and pilot ­advanced collaboration tools

—Better health care through better information—e.g., via the communitydriven, highly collaborative

—“Nationwide Health Information Network–Direct” initiative being pursued by the Office of the National Coordinator for Health Information Technology

tant, ongoing data use will drive improvements in data quality and applicability. HHS therefore seeks to catalyze the development of an ecosystem of data by stimulating both data supply and use.

Building on the foundation provided by increased availability of data, HHS will encourage public participation and collaboration by engaging in an ongoing dialogue with potential users of the data. Through such communication, HHS seeks to catalyze learning by advancing understanding of what types of data could be useful, the limitations of currently available data, and means of better supporting data use. This approach is best illustrated by the Community Health Data Initiative, which seeks to help Americans better understand and take action to improve healthcare performance in their communities. The initiative’s initial short-term goal is to build a network of data suppliers and users. In the longer term, this network will

—Innovation in the workplace—e.g., via the piloting of an online employee idea-generation tool and challenge program by the CMS

•Community Health Data Initiative. A major new public–private effort whose goal is help Americans understand health and healthcare performance in their communities relative to others—and to help spark and facilitate action to improve performance. As a core enabler of this initiative, HHS will be providing to the public, free of charge and any intellectual property constraint, a large-scale Community Health Data Set harvested from across HHS—a wealth of easily accessible, downloadable data on public health and health care performance across communities, including a major contribution of Medicare-related data from CMS (i.e., prevalence of disease, quality, cost, and service utilization data at the national, state, regional, and potentially county levels). The initiative is simultaneously­ working with a growing array of technology companies, ­researchers, health advocates, consumer advocates, employers, providers, media, etc. to identify and deploy uses of the data that would be most effective at

1.Raising awareness of community health performance,

2.Increasing pressure on decision makers to improve performance, and

3.Helping to facilitate and inform improvement efforts.

Such applications and programs could include interactive health maps, competitions, social networking games that educate people about community health, enhanced web search results for health searches, etc. By leveraging the power of transparency, participation, and collaboration, the Community Health Data Initiative seeks to significantly improve the health of our communities.

develop into a community health data ecosystem in which a broad array of users take data supplied by HHS and others and develop means for their display or application in ways that drive continuous improvement in the health of communities across the United States (Figure 3-1).

HHS tested the potential of such a data ecosystem at a workshop, convened with the help of the Institute of Medicine (IOM) on March 11, 2010, featuring leaders from two largely separate worlds—healthcare and information technology applications. About 40 individuals with deep expertise in either healthcare data or how to use data to change people’s lives came together at this meeting, and an amazing thing happened. The information technologists became excited about data already captured by HHS and began a conversation with healthcare experts in a burst of creativity. By the end of the day, ideas had been developed for 19 new applications

FIGURE 3-1  Design framework for HHS’s Community Health Data Initiative. This initiative is a public–private effort to catalyze the development of a network of community health data suppliers (beginning with HHS) and data “appliers” who will use these data to create a variety of applications aimed at raising awareness of and improving performance on community health issues.

SOURCE: HHS, 2010.

that could help monitor and drive improvements in community health—all of which were plausible and doable in 2010. Participants formed volunteer teams to develop 11 of these applications.

New Data Applications for a Learning Healthcare System

A sample of the proposed applications is presented in Box 3-2. They range from interactive health maps, to means of improving public understanding of national health issues, to community health dashboards that can aid city or county officials in identifying key regional health issues and communicating about these issues with the public.

One application, for example, based on a real estate website that displays school system performance metrics as part of a property’s description, would also include health performance data in home listings. This application alone would probably educate more people about health performance than would be possible with any health-focused interactive map, because the number of people who would seek out such a map is dwarfed by the

BOX 3-2  Continued

management and understanding of the disease. Asthmapolis provides people with the latest information about asthma in their communities, and helps scientists and public health agencies target interventions designed to reduce the burden of asthma.

Reach for the Top: Improving Health, Healthcare Delivery, and Cost of Care in Your Community—Reach for the Top is a collaborative, community-based initiative in initial planning stages with support from the Institute for Healthcare Improvement (IHI) and Ingenix. Reach for the Top uses data to provoke communities to improve across three dimensions of care: the health of the population, the individual experience of care, and the cost of care. First, communities will be able to access information from a variety of sources, including both commercial and government data, to gain an understanding of their current status in each of these three dimensions. They will then be able to monitor their improvement as they work to move to the top tenth percentile of each metric. By seeing how their metrics compare to those of other communities, participating communities will be able to seek out top performers and learn from each other. Reach for the Top metrics will expand as more data become available.

Google—To highlight the value of HHS’s Hospital Compare database, public data were imported into Google Fusion Tables so that they can be easily explored and visualized by anyone who wants to ask questions or tell a story about them.

Hospitals can be ordered in a given geography by 30-day heart attack mortality, how well they do with pain control, or a combination of these and other measures. The data can be viewed in a table, a graph, or on a map. Most importantly, we can collaborate with others, combine this data with other data, and easily share a given visualization as a link or embed it in a blog or other publication. We expect that more data transparency and tools to explore data will result in a virtuous cycle of better healthcare decisions, new hypotheses, and innovations that will transform health in ways we can’t yet imagine.

Community Clash: Healthiest city wins.You play the cards. (MeYou Health—a Healthways company)—Community Clash is an online card game that engages you in a discovery of your community’s health and well-being status and how it compares to other communities in a head-to-head clash. A mash-up of community health indicators, the Gallup-Healthways Well-Being Index and the Healthways Well-Being Assessment, Community Clash lets you pick community indicators you believe give you an edge in the head-to-head game play. Play endless hands, exploring different metrics and locations each time, and share key victories with your social network. After a hand is played, the experience is brought alive with Twitter conversations, filtered by the metric being explored. Finally, Community Clash gets personal, prompting each player to compute his or her own Well-Being Score and encouraging social comparison with friends through Facebook integration. The Community Clash user experience can be enriched in the future by expanding the deck of playing cards to incorporate additional community indicators.