Opinion
VIEWPOINT
Erika G. Martin, PhD, MPH Nelson A. Rockefeller Institute of Government–State University of New York and Rockefeller College of Public Affairs and Policy, University at Albany-State University of New York, Albany. Natalie Helbig, PhD, MPA Center for Technology in Government, University at AlbanyState University of New York, Albany. Nirav R. Shah, MD, MPH Office of the Commissioner, New York State Department of Health, Albany, and now with Kaiser Permanente, Pasadena, California.
Corresponding Author: Nirav R. Shah, MD, MPH, Kaiser Permanente, 393 E Walnut St, Pasadena, CA 91188 (nirav.r.shah @kp.org).
Liberating Data to Transform Health Care New York’s Open Data Experience The health community relies on governmental survey, surveillance, and administrative data to track epidemiologic trends, identify risk factors, and study the health care delivery system. Since 2009, a quiet “open data” revolution has occurred. Catalyzed by President Obama’s open government directive, federal, state, and local governments are releasing deidentified data meeting 4 “open” criteria: public accessibility, availability in multiple formats, free of charge, and unlimited use and distribution rights. 1 As of February 2014, HealthData.gov, the federal health data repository, has more than 1000 data sets, and Health Data NY, New York’s health data site, has 48 data sets with supporting charts and maps. Data range from health interview surveys to administrative transactions. The implicit logic is that making governmental data readily available will improve government transparency; increase opportunities for research, mobile health application development, and data-driven quality improvement; and make health-related information more accessible. Together, these activities have the potential to improve health care quality, reduce costs, facilitate population health planning and monitoring, and empower health care consumers to make better choices and live healthier lives. Can open data initiatives achieve these lofty goals? We believe so, and our experience in New York demonstrates how open data have already affected emergency response, public health policy, training of clinicians, patient safety, and cost accountability. In 2011, Hurricane Irene illuminated how open data can facilitate emergency response. The nursing home weekly bed census was one of the first data sets to be released. New York nursing homes report their bed capacity and availability weekly, with data refreshed on the Health Data NY site. Initially, these data seemed relevant only to long-term health care planning. But when Hurricane Irene approached New York City, nursing home administrators used the census to identify locations to evacuate patients residing in the flood zone. Although emergency response is already a core public health function, facilitating the evacuation was an unanticipated and exciting benefit of posting these data. Releasing childhood obesity data illuminated a critical public health issue and shifted local school policies. In 2013, data and geospatial maps of the proportion of obese and overweight students by school district were uploaded to the Health Data NY site. News media leveraged the versatile open data platform to embed maps into articles. Subsequently, release of these news reports pressured some school administrators to maintain health-promoting school policies despite cost pressures. Although these data are aggregated, they had a
meaningful effect on public health policy. Whether they influence rates of obesity is not yet known. New York University School of Medicine is using open data to advance its medical education curriculum (M. Triola, MD, oral communication, January 21, 2014). The university uses deidentified Statewide Planning and Research Cooperative System (SPARCS) data on all inpatient discharges in New York, which historically required extensive data use agreements, to create snapshots of patients at different facilities and regions. In conjunction, students upload all training activities, including cases assigned, to a medical education dashboard. Mentors compare students’ activities against a benchmark created from SPARCS data to identify where students need additional training to meet patient demand and to customize students’ clinical assignments. The SPARCS data are also used in a data analytics course, teaching students how to identify variation in cost, quality, and outcomes. Integrating these open data into the curriculum ensures that students will have appropriate training to serve the New York patient population and the data skills to lead future quality improvement initiatives. In addition, making information readily available allows medical “hot spotters” to focus attention on disparities in cost, quality, or health outcomes across clinicians, facilities, and regions, which can subsequently catalyze change. For instance, since 1989, New York has maintained a clinical registry of cardiac surgery, releasing annual reports on hospital- and surgeon-level mortality rates. Poor ratings prompted several institutions to undertake quality improvement initiatives and lowvolume/high-mortality surgeons to cease practicing. Overall, these public reports improved cardiac surgical outcomes statewide, beyond secular trends.2 More recently, Crain’s New York Business used SPARCS data to publicize cost disparities, such as the median cost of hip replacements being nearly 10 times higher at New York University Hospitals Center ($103 725) than at Bellevue Hospital Center ($15 436), despite their being affiliated institutions.3 Although it is too soon to evaluate the effects of the report, policy makers are already using these statistics to better calibrate Medicaid reimbursement rates. In doing this work, several challenges have emerged. The first is building public health agencies’ capacity to release data. Most have considerable experience collecting data and providing access to researchers but little experience designing open data strategies for multiple stakeholders.4 Agencies’ resource constraints may delay data collection and limit how much data cleaning, quality checking, and analysis can be performed. However, a benefit of open data is that users may identify data
jama.com
JAMA June 25, 2014 Volume 311, Number 24
Copyright 2014 American Medical Association. All rights reserved.
Downloaded From: http://jama.jamanetwork.com/ by a Ndsu Library Periodicals User on 06/09/2015
2481
Opinion Viewpoint
errors, thereby improving quality, and perform analyses that otherwise would not be performed. Second, data collected for one purpose may not be suitable for another. Administrative billing data were not designed for research and may be biased to maximize reimbursement, potentially compromising its validity. A third challenge is the complex legal and regulatory constraints on health information, which require agencies to conscientiously aggregate data to avoid exposing individual-level information. Fourth, the success of open data relies on users, but the most popular data sets (for example, Health Data NY’s genealogical research death index) may not represent pressing health issues. Fifth, analyses that can be conducted using these data may show evidence of association but not causality. New York envisions using open health data to empower New Yorkers, spur innovation, and inspire creative collaboration to improve the quality of the New York health care delivery system and of public health overall. Maintaining a website with data sets is a necessary step but not sufficient to achieve this vision. New York adapted the federal model by including public health messaging on its portal, developing data documentation requirements that provide more context for users, listing data manager contact information and potential research questions for each data set, and hosting Code-a-thon events. During these multi-day competitions, participants develop prototype mobile applications using open data. New York’s 2013 Code-a-thon also featured “luminary talks” on open health data and local health issues. This engagement and collaboration are critical for building communities that will use data to transform health care. ARTICLE INFORMATION Conflict of Interest Disclosures: All authors have completed and submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest and none were reported. Funding/Support: This work was supported by grants from the New York State Health Foundation and the Robert Wood Johnson Foundation’s Public Health Services and Systems Research program (grant 71597). Role of the Sponsors: The funders had no role in the preparation, review, or approval of the manuscript or the decision to submit the manuscript for publication. Additional Contributions: We are grateful to Gregory Downing, DO, PhD (Department of Health and Human Services), Dwayne Spradlin (Health Data Consortium), Paul Tarini, MA (Robert Wood Johnson Foundation), Este Geraghty, MD, MPH, MS (UC Davis Health System), Guthrie Birkhead, MD, MPH (New York State Department of Health and University at Albany), Foster Gesten, MD (New York
2482
The open data movement is young, and New York’s early experience provides some lessons. Driving health care innovation through open data requires a sustained effort, active leadership, and a cultural shift within agencies to break down data silos. State directives can enable these changes. Although the New York State Department of Health has practiced open data since August 2011 through its Maximizing Essential Tools for Research Innovation and eXcellence Project, Governor Cuomo’s Executive Order 95 in March 2013 facilitated more aggressive and sustained release by providing a clear framework and a mandate to make data available on state platforms.5 New York partnered with experienced organizations, learning from the federal government and the Health Data Consortium, which runs regular data events. Likewise, New York’s Open Data Handbook can be readily adapted for other governments.6 These activities are critical for changing the model of how governmental data are released to and used by the public. The tools to facilitate health system transformation are already locked in governmental servers. One estimate suggests the economic value of open data to the US health care industry to be $300 billion to $450 billion annually.1 Lack of transparency about cost and quality is a major barrier to health care innovation,7 and new companies aim to lower costs and improve quality by providing consumers with better information about clinicians, health care centers, services, and treatments. Using information technology to transform health care is gaining traction, and open data provide sizeable new opportunities. Continuing to make governmental data available and cultivating open data communities could have large payoffs.
State Department of Health), and Marc Triola, MD (New York University School of Medicine), for helpful comments on earlier drafts.
4. Harrison TM, Pardo TA, Cook M. Creating open government ecosystems: a research and development agenda. Future Internet. 2012;4:900928.
REFERENCES
5. Cuomo AM. Using Technology to Promote Transparency, Improve Government Performance and Enhance Citizen Engagement. New York Governor Andrew M. Cuomo website. http://www .governor.ny.gov/executiveorder/95. March 11, 2013. Accessed February 1, 2014.
1. Manyika J, Chui M, Farrell D, Van Kuiken S, Groves P, Doshi EA. Open Data: Unlocking Innovation and Performance With Liquid Information. McKinsey & Co website. http://www .mckinsey.com/insights/business_technology/open _data_unlocking_innovation_and_performance _with_liquid_information. 2013. Accessed April 23, 2014. 2. Hannan EL, Cozzens K, King SB III, Walford G, Shah NR. The New York State cardiac registries: history, contributions, limitations, and lessons for future efforts to assess and publicly report healthcare outcomes. J Am Coll Cardiol. 2012;59 (25):2309-2316. 3. Crain’s New York Business: Health Pulse Extra. January 8, 2014.
6. Open data handbook: New York State Open Data Initiative. Open New York website. http://nys-its.github.io/open-data-handbook/. Accessed February 1, 2014. 7. Culter DM. Where Are the Health Care Entrepreneurs? The Failure of Organizational Innovation in Health Care. NBER Working Paper No. 16030. National Bureau of Economic Research website. http://www.nber.org/papers/w16030. 2010. Accessed March 14, 2014.
JAMA June 25, 2014 Volume 311, Number 24
Copyright 2014 American Medical Association. All rights reserved.
Downloaded From: http://jama.jamanetwork.com/ by a Ndsu Library Periodicals User on 06/09/2015
jama.com
VIEWPOINT
Erika G. Martin, PhD, MPH Nelson A. Rockefeller Institute of Government–State University of New York and Rockefeller College of Public Affairs and Policy, University at Albany-State University of New York, Albany. Natalie Helbig, PhD, MPA Center for Technology in Government, University at AlbanyState University of New York, Albany. Nirav R. Shah, MD, MPH Office of the Commissioner, New York State Department of Health, Albany, and now with Kaiser Permanente, Pasadena, California.
Corresponding Author: Nirav R. Shah, MD, MPH, Kaiser Permanente, 393 E Walnut St, Pasadena, CA 91188 (nirav.r.shah @kp.org).
Liberating Data to Transform Health Care New York’s Open Data Experience The health community relies on governmental survey, surveillance, and administrative data to track epidemiologic trends, identify risk factors, and study the health care delivery system. Since 2009, a quiet “open data” revolution has occurred. Catalyzed by President Obama’s open government directive, federal, state, and local governments are releasing deidentified data meeting 4 “open” criteria: public accessibility, availability in multiple formats, free of charge, and unlimited use and distribution rights. 1 As of February 2014, HealthData.gov, the federal health data repository, has more than 1000 data sets, and Health Data NY, New York’s health data site, has 48 data sets with supporting charts and maps. Data range from health interview surveys to administrative transactions. The implicit logic is that making governmental data readily available will improve government transparency; increase opportunities for research, mobile health application development, and data-driven quality improvement; and make health-related information more accessible. Together, these activities have the potential to improve health care quality, reduce costs, facilitate population health planning and monitoring, and empower health care consumers to make better choices and live healthier lives. Can open data initiatives achieve these lofty goals? We believe so, and our experience in New York demonstrates how open data have already affected emergency response, public health policy, training of clinicians, patient safety, and cost accountability. In 2011, Hurricane Irene illuminated how open data can facilitate emergency response. The nursing home weekly bed census was one of the first data sets to be released. New York nursing homes report their bed capacity and availability weekly, with data refreshed on the Health Data NY site. Initially, these data seemed relevant only to long-term health care planning. But when Hurricane Irene approached New York City, nursing home administrators used the census to identify locations to evacuate patients residing in the flood zone. Although emergency response is already a core public health function, facilitating the evacuation was an unanticipated and exciting benefit of posting these data. Releasing childhood obesity data illuminated a critical public health issue and shifted local school policies. In 2013, data and geospatial maps of the proportion of obese and overweight students by school district were uploaded to the Health Data NY site. News media leveraged the versatile open data platform to embed maps into articles. Subsequently, release of these news reports pressured some school administrators to maintain health-promoting school policies despite cost pressures. Although these data are aggregated, they had a
meaningful effect on public health policy. Whether they influence rates of obesity is not yet known. New York University School of Medicine is using open data to advance its medical education curriculum (M. Triola, MD, oral communication, January 21, 2014). The university uses deidentified Statewide Planning and Research Cooperative System (SPARCS) data on all inpatient discharges in New York, which historically required extensive data use agreements, to create snapshots of patients at different facilities and regions. In conjunction, students upload all training activities, including cases assigned, to a medical education dashboard. Mentors compare students’ activities against a benchmark created from SPARCS data to identify where students need additional training to meet patient demand and to customize students’ clinical assignments. The SPARCS data are also used in a data analytics course, teaching students how to identify variation in cost, quality, and outcomes. Integrating these open data into the curriculum ensures that students will have appropriate training to serve the New York patient population and the data skills to lead future quality improvement initiatives. In addition, making information readily available allows medical “hot spotters” to focus attention on disparities in cost, quality, or health outcomes across clinicians, facilities, and regions, which can subsequently catalyze change. For instance, since 1989, New York has maintained a clinical registry of cardiac surgery, releasing annual reports on hospital- and surgeon-level mortality rates. Poor ratings prompted several institutions to undertake quality improvement initiatives and lowvolume/high-mortality surgeons to cease practicing. Overall, these public reports improved cardiac surgical outcomes statewide, beyond secular trends.2 More recently, Crain’s New York Business used SPARCS data to publicize cost disparities, such as the median cost of hip replacements being nearly 10 times higher at New York University Hospitals Center ($103 725) than at Bellevue Hospital Center ($15 436), despite their being affiliated institutions.3 Although it is too soon to evaluate the effects of the report, policy makers are already using these statistics to better calibrate Medicaid reimbursement rates. In doing this work, several challenges have emerged. The first is building public health agencies’ capacity to release data. Most have considerable experience collecting data and providing access to researchers but little experience designing open data strategies for multiple stakeholders.4 Agencies’ resource constraints may delay data collection and limit how much data cleaning, quality checking, and analysis can be performed. However, a benefit of open data is that users may identify data
jama.com
JAMA June 25, 2014 Volume 311, Number 24
Copyright 2014 American Medical Association. All rights reserved.
Downloaded From: http://jama.jamanetwork.com/ by a Ndsu Library Periodicals User on 06/09/2015
2481
Opinion Viewpoint
errors, thereby improving quality, and perform analyses that otherwise would not be performed. Second, data collected for one purpose may not be suitable for another. Administrative billing data were not designed for research and may be biased to maximize reimbursement, potentially compromising its validity. A third challenge is the complex legal and regulatory constraints on health information, which require agencies to conscientiously aggregate data to avoid exposing individual-level information. Fourth, the success of open data relies on users, but the most popular data sets (for example, Health Data NY’s genealogical research death index) may not represent pressing health issues. Fifth, analyses that can be conducted using these data may show evidence of association but not causality. New York envisions using open health data to empower New Yorkers, spur innovation, and inspire creative collaboration to improve the quality of the New York health care delivery system and of public health overall. Maintaining a website with data sets is a necessary step but not sufficient to achieve this vision. New York adapted the federal model by including public health messaging on its portal, developing data documentation requirements that provide more context for users, listing data manager contact information and potential research questions for each data set, and hosting Code-a-thon events. During these multi-day competitions, participants develop prototype mobile applications using open data. New York’s 2013 Code-a-thon also featured “luminary talks” on open health data and local health issues. This engagement and collaboration are critical for building communities that will use data to transform health care. ARTICLE INFORMATION Conflict of Interest Disclosures: All authors have completed and submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest and none were reported. Funding/Support: This work was supported by grants from the New York State Health Foundation and the Robert Wood Johnson Foundation’s Public Health Services and Systems Research program (grant 71597). Role of the Sponsors: The funders had no role in the preparation, review, or approval of the manuscript or the decision to submit the manuscript for publication. Additional Contributions: We are grateful to Gregory Downing, DO, PhD (Department of Health and Human Services), Dwayne Spradlin (Health Data Consortium), Paul Tarini, MA (Robert Wood Johnson Foundation), Este Geraghty, MD, MPH, MS (UC Davis Health System), Guthrie Birkhead, MD, MPH (New York State Department of Health and University at Albany), Foster Gesten, MD (New York
2482
The open data movement is young, and New York’s early experience provides some lessons. Driving health care innovation through open data requires a sustained effort, active leadership, and a cultural shift within agencies to break down data silos. State directives can enable these changes. Although the New York State Department of Health has practiced open data since August 2011 through its Maximizing Essential Tools for Research Innovation and eXcellence Project, Governor Cuomo’s Executive Order 95 in March 2013 facilitated more aggressive and sustained release by providing a clear framework and a mandate to make data available on state platforms.5 New York partnered with experienced organizations, learning from the federal government and the Health Data Consortium, which runs regular data events. Likewise, New York’s Open Data Handbook can be readily adapted for other governments.6 These activities are critical for changing the model of how governmental data are released to and used by the public. The tools to facilitate health system transformation are already locked in governmental servers. One estimate suggests the economic value of open data to the US health care industry to be $300 billion to $450 billion annually.1 Lack of transparency about cost and quality is a major barrier to health care innovation,7 and new companies aim to lower costs and improve quality by providing consumers with better information about clinicians, health care centers, services, and treatments. Using information technology to transform health care is gaining traction, and open data provide sizeable new opportunities. Continuing to make governmental data available and cultivating open data communities could have large payoffs.
State Department of Health), and Marc Triola, MD (New York University School of Medicine), for helpful comments on earlier drafts.
4. Harrison TM, Pardo TA, Cook M. Creating open government ecosystems: a research and development agenda. Future Internet. 2012;4:900928.
REFERENCES
5. Cuomo AM. Using Technology to Promote Transparency, Improve Government Performance and Enhance Citizen Engagement. New York Governor Andrew M. Cuomo website. http://www .governor.ny.gov/executiveorder/95. March 11, 2013. Accessed February 1, 2014.
1. Manyika J, Chui M, Farrell D, Van Kuiken S, Groves P, Doshi EA. Open Data: Unlocking Innovation and Performance With Liquid Information. McKinsey & Co website. http://www .mckinsey.com/insights/business_technology/open _data_unlocking_innovation_and_performance _with_liquid_information. 2013. Accessed April 23, 2014. 2. Hannan EL, Cozzens K, King SB III, Walford G, Shah NR. The New York State cardiac registries: history, contributions, limitations, and lessons for future efforts to assess and publicly report healthcare outcomes. J Am Coll Cardiol. 2012;59 (25):2309-2316. 3. Crain’s New York Business: Health Pulse Extra. January 8, 2014.
6. Open data handbook: New York State Open Data Initiative. Open New York website. http://nys-its.github.io/open-data-handbook/. Accessed February 1, 2014. 7. Culter DM. Where Are the Health Care Entrepreneurs? The Failure of Organizational Innovation in Health Care. NBER Working Paper No. 16030. National Bureau of Economic Research website. http://www.nber.org/papers/w16030. 2010. Accessed March 14, 2014.
JAMA June 25, 2014 Volume 311, Number 24
Copyright 2014 American Medical Association. All rights reserved.
Downloaded From: http://jama.jamanetwork.com/ by a Ndsu Library Periodicals User on 06/09/2015
jama.com
