HEALTH DATA PRIORITIES FOR THE U.S. HEALTH CARE SYSTEM

HEALTH DATA PRIORITIES FOR THE U.S. HEALTH CARE SYSTEM Key Discussion Areas, Findings and Priorities: The Health Data Leadership Summit Health Data Consortium November 12, 2013 DISCLAIMER This paper is the output of the Health Data Consortium and does not necessarily represent views of all participants or organizations involved. HDC Summit Whitepaper Health Data Consortium Share with permission 1

INTRODUCTION Big data is at the center of today s health care transformation the largest since 1965, when Medicaid and Medicare were founded. A recent report from the McKinsey Center for U.S. System Reform predicts that the ability to leverage health care data effectively has the potential to save billions of dollars in health care costs while significantly improving patient care. i To do this effectively requires maximizing liquidity so that health data can flow freely between and among participants in the health care ecosystem. Unlike other industries such as finance and retail, the health care sector has been reluctant to adopt common data exchange norms. Despite the terabytes of data that the health care system inherently generates patient reports, insurance claims, medical statistics, pharmacy records, infectious disease outbreaks, and so on cultural mindsets and health care sector norms are not attuned to or aligned with the opportunities. An exploding demand for health data exists in commercial, academic, and government organizations; yet data sharing, while technologically feasible, is still largely muted. With better access to and more widespread analysis of health data, providers and payers could, for example, identify gaps in care and quality and then, in order to fill those gaps, target interventions to the patients who will benefit most. Finally, health data plays an integral role in payment reforms that are on the horizon with the advent of Accountable Care Organizations (ACOs). The Health Data Leadership Summit In mid-november 2013 at the John F. Welch Leadership Development Center in Ossining, New York, the Health Data Consortium (HDC) - a non-profit, public private partnership working to foster the availability and innovative use of data to improve health and health care - convened 35 senior health care leaders for the purpose of exploring the future of health data in the United States. Although all the attendees hold an interest in open health data, they represent diverse constituencies and interests--private companies, non-profit organizations, the federal government, health care payers, providers, technology developers, advocates, consultants, and researchers. The agenda for the day was both straightforward and yet substantial: ENVISIONING A FUTURE STATE OF HEALTH DATA BARRIERS TO ACHIEVING THE VISION BROAD OPPORTUNITIES FOR CATALYZING CHANGE Sharing health data is not a question of if but one of how and when. WHICH CHALLENGES SHOULD HDC TAKE ON IN 2014 TO ADVANCE KEY HEALTH DATA OPPORTUNITIES? Together, the leaders wrestled with issues crucial and timely for the way forward. This brief will share highlights from the day s group discussions. As Bryan Sivak, Chief Technology Officer for the U.S. Department of Health and Human Services (HHS) remarked, This is the moment. This is the catalyst. HDC Summit Whitepaper Health Data Consortium Share with permission 2

ENVISIONING A FUTURE STATE OF HEALTH DATA If the nation were successful in liberating health data, what would it look like? The group envisioned a robust, reliable, and rich future state, one enabled by technology and grounded in principles of transparency and data flow that will create a truly patient-centered health care system capable of achieving better health care at lower cost. They came up with some broad characteristics of access, sharing, and support. Data access will be increasingly important to patients, health care professionals, payers, researchers, and employers. Data sharing will be increasingly relevant to hospitals and health care researchers. Support for open health data infrastructure and policy will increasingly come from technology developers and government. A future state for open health data that speaks to the complexity of a health care ecosystem and will meet the needs of government and employees is not easy to attain. The summit leaders recognize that each area demands deeper conversation and that there is much more to do. But as the group looked at different aspects of the system, they found both common characteristics and areas of disagreement. Below are the hallmarks of a dialogue that focused on how each of the major segments in the health care ecosystem---patients, employers and payers, health care professionals, health care institutions, researchers, technology developers, and government could become transformed by the open sharing of health care data. Data Access As patients become consumers who shoulder more of the responsibility for their health care choices and spending, they will be able to access outcome and performance reports to make intelligent choices about their individual health care. Accessing health data resources will be as technically easy, understandable, and prevalent as using a smart phone. Assurances of patient privacy and security will accompany data-powered new health care services such as telemetric medicine, patient portals, and electronic apps. Data about new treatments will be widely HDC Summit Whitepaper Health Data Consortium Share with permission 3

available. Commodity and preventive health care services, such as the flu shot and primary care, will be evaluated according to ease of use, convenience, and cost; non-commodity services for complex procedures, such as brain surgery and cancer treatments, will become more personalized. Access to across-the-board outcome and performance reports for routine treatments and complex medical treatments, combined with health insurance claims data (largely available now) will be valuable to employers and payers who want to offer the best care at the lowest cost. Access to free flowing data from hospitals and health care centers that measures providers efficiency and performance will meet payers demands for payment reforms as promised by ACOs, in particular the Medicare Shared Savings Program, a Centers for Medicaid and Medicare Service (CMS) program designed to improve efficiency in the Medicare Fee-for- Service payment system. Access to data will also enable health care professionals to leverage the right information at the right time for the right patient. As health professionals increasingly rely on health care technologies to coordinate and deliver improved, evidence-based care, appropriate electronic data collection at points-of-care will become the norm. Data Sharing Data sharing will enable providers to manage their patient populations for shared-risk payment models, including performance improvements that measure economies of scale to compare one-size-fits-all care and individualized value. Data sharing between patients and providers will promote better communication, better relationships, and more opportunities to influence behavior changes and to integrate medical with social service care. Data sharing concepts and tools will be introduced in medical school training. Nationwide, institutions throughout the health care ecosystem will practice data sharing to maximize benefits for all. Differently located health care institutions and health care systems that practice data sharing with one another will offer better management with less financial risk. True risk adjustments will be made in sophisticated ways that are based on socio-economics, race, medical history, and so on. A reduction in emergency readmissions, unnecessary specialist visits, or repeat lab testing will offset the significant initial cost to institutions to set up the necessary health information technology infrastructures. Fluid interoperability will enable data sharing exchanges between and among hospitals, ambulatory care settings, and telemetric care, which will improve overall clinical care for patients within a given health care system. Fluid interoperability requires that technical and clinical standards will be in place. Furthermore, existing legacy software systems will either be replaced or matched to newer software. Transparent data sharing will offer an accurate understanding of diverse populations and varying community needs, which will help to equalize discrepancies in medical care. HDC Summit Whitepaper Health Data Consortium Share with permission 4

Private, academic, and public sector health care researchers will develop the trust for responsible data sharing to their mutual advantage. Commercial, academic, and scientific interests will be regulated in ways that allow open data sharing but that preserve competitive interests when necessary and that consistently protect patient-consumer data privacy and security. Researchers will advance and accelerate innovation in part by having access to rich and large comprehensive sets that result from sharing data. Open technology architectures that take advantage of the liquidity that facilitates data sharing will enable large-scale research collaborations. For their part, technology developers will design applications, visualization tools, analytic software, and other information services and platforms guided by a genuine understanding of hospital care settings and patient needs. Their individual innovations will consciously align with current technical and medical standards so as to increase ease-of-use for data access and interoperability for data sharing. Roles will be defined for technology developer entrepreneurs and their start-ups who want to engage with constituents to find solutions that align with research and health care aims. As more data becomes liberated, technology developers will innovate easy-to-use web and mobile apps that will improve health care delivery. Data access and use behaviors now common in some settings for example, diabetes patients who electronically track their diet and medication regimes or members of the Quantified Self movement, personal data collection groups that promote monitoring self-data for everything from sleep positions to one s pulse while ice climbing will become a widespread, cultural norm. Other health care businesses that now exist will become obsolete as new innovations take their place. Support The federal government will continue to support and set the tone for coordinated, open data programs that ensure patient privacy and promote population health and analytic research. This agenda will include comparable data between states in the United States and between other countries and the United States. Individual states and cities will increasingly support health data innovation that aligns the patient s best interests with policy initiatives and lowered cost measures. Policy, especially policy decisions made by local governments, will be informed by careful consideration of the relevant data sets and the insights they provide. As top technology people are increasingly drawn to work for the government and discover new opportunities, the federal administration will have the ability to expand the ways in which more people can access more data. There will be more innovative and easy-to-use methods that encourage patients to feel more in control of their health and personal health information, ii such as the recently created Blue Button connector tool that allows people to access, view and download personal medical information online. Government organizations will follow CMS in making available data navigators that guide public users to menus of de-identified data sets from relevant programs. HDC Summit Whitepaper Health Data Consortium Share with permission 5

BARRIERS TO ACHIEVING THE VISION What prevents health care data sharing to the benefit of all stakeholders? What gets in the way of achieving this vision of a desired future state? Summit leaders identified at least three major barriers that currently cut across all stakeholder concerns. Absence of a Collective Vision and Roadmap Stakeholders scrambling to prepare for logistical changes that data capture demands and trying to comply with new regulations that comprise the health care transformation are unable to lift their heads, so to speak, and formulate a collective vision or roadmap for the future. As a result, existing silos across therapeutic areas often create unnecessary data redundancies and reinforce isolation and competition instead of shared resources and knowledge. Although strides are being made in capturing health data, the fragmentary nature of the enterprise complicates attempts for a collective vision regarding what the data is for and how it can be used. The growing awareness that the pay-for-service model of health care is becoming outdated has not necessarily led to innovative and new alternate models that encourage and implement shared risk payment reform. No universally accepted standardized technology interfaces, semantics, or data entry codes currently exist nationwide that could guide a collective roadmap. Moreover, legacy software systems already in use have outdated code and are hard to interface, putting institutions in a difficult bind: heavily invest in an IT staff that may or may not get the job done well or invest even more in a new technology system. Software installed by two different vendors at three different times for one hospital practice may not have the requisite interfaces and may therefore prevent the interoperability necessary to integrate, analyze and disseminate the most basic data. An ambulatory care practice with 15 health providers on staff may have 15 different (handwritten) data notations describing patients diabetes disease measurement, making it impossible to enter data electronically with any consistent standardization. Entrenched Cultures One summit leader characterized health care s attitude toward change as, the default setting is no. Large-scale transformation requires relinquishing outdated behaviors and attachments to the way we ve always done things around here. Common fears entrenched in the culture include anxiety toward mastering new technologies, concerns that technology will intrude on the patient-provider relationship, and institutional resistance to cost. Misperceptions about the important roles data can play in the health care system s triple aim of improved health, better patient care, and lower cost also keep the status quo intact, as do special interest groups resistant to changes they may find threatening. One summit leader characterized health care s attitude toward change as, the default setting is no.. As it stands, the Health Insurance Portability and Accountability Act (HIPAA), originally intended to protect health insurance coverage for patients and later expanded to address security and privacy of health care data, can unintentionally contribute to rigid or overly cautious interpretations regarding privacy. Moreover, it can encourage a culture that errs on the side of not sharing data even when data sharing is essential to overall well-being of individuals and the health care system. HDC Summit Whitepaper Health Data Consortium Share with permission 6

The Perception of Data as a Competitive Advantage Until recently, health data sharing has been disfavored by financial incentives and impeded by most policies. Some reluctance to share data is due to the fact that many organizations perceive that their data is valuable and is hence an asset that should be exploited rather than given away freely. Hospitals retain patient data in part because they do not want to lose patient-consumers to competitive institutions. Private industry, in particular pharmaceutical companies and privately funded research and development, generally maintain proprietary control since their data helps fuel their businesses and protect their products. Non-profits, in turn, hold the perception that the private sector cannot be trusted with shared data because it will only be used for financial gain. BROAD OPPORTUNITIES FOR CATALYZING CHANGE Key themes emerged and resonated throughout the day around the challenges and opportunities of open health data. Addressing these core themes with clarity and focus will fundamentally transform the space. Leverage Policy to Drive Active Data Sharing As a group, the leaders discussed that regulatory reforms may be crucial to open data sharing and use. There were, however, different opinions on the best strategy to reach this goal. Some attendees advocated that policy requirements be established so data sharing could support clinical pathways and payment regimes. Others, believing that imposing such requirements would encourage resistance and pushback, advocated instead for first developing comfort and culture around sharing data. Differences of opinion were also voiced as to whether the more effective strategy for regulatory reform is to work on a state level (as has been done in New York) or on a national level, where the federal government could play a leadership and precedent setting role. Still other people argued that it might be easier to reach consensus on general principles and norms about data sharing before setting down stricter policy reforms. Enable Safe Sharing, Linkage, and Use of Patient Data across the System There was broad consensus that stakeholders must come to agreement on how to responsibly deal with privacy and security across the industry. If patient portals, health care apps, and telemedicine are to succeed, they must be secure. How does the nation simultaneously ensure patient-consumer privacy and allow patient health data to be used to improve health care? Various views were expressed, including mention that policy centers play an important role in addressing patients concerns about how their health data can and cannot be used while also emphasizing patients legal rights and responsibility to personal medical information. Yet overall, the group concurred that what currently exists is insufficient. Ultimately, the group agreed, a new social contract is needed that defines how data is shared; one that assures patient privacy and trust while encouraging the data accessibility that can open new space for business interests. HDC Summit Whitepaper Health Data Consortium Share with permission 7

Govern for Health Data The group called for governance in using and sharing data, as well as the need for a set of data licensing rules. Some summit leaders thought it would be most effective to work on an overall governance structure that would encourage investment decisions; others proposed a crawlwalk-run approach to establish use cases from which would naturally arise consensus for governance and a set of guiding principles. The group broadly acknowledged governance for data sets as a high priority, but advocated for using the thinnest possible governance layer to define and agree upon so that business interests are not delayed. Educate for Open Data Summit leaders agreed wholeheartedly that education is key to changing mindsets and behaviors across the health care ecosystem. Education is necessary for all stakeholders to understand how the shift to open health data will benefit their interests. Patientconsumers need to understand how their engagement in data sharing will give them greater control and responsibility, and ultimately, lower costs. In particular, the processes currently surrounding patient consent to share their data for clinical management or research needs must be made simpler and more accessible. Providers, employers, and health institutions Summit leaders agreed wholeheartedly that education is key to changing mindsets and behaviors across the health care ecosystem. need to understand that data sharing is financially beneficial and essential to improved patient care delivery. Public and private researchers need to understand that data sharing will accelerate and broaden innovation activities. Finally, all stakeholders need to understand that the value proposition of health data - derived from disruptive innovation through new applications and services that improve efficiency, access and quality of health care - can only be realized by bringing talent and business investment from other fields to health care and modernizing the business of health. Successfully moving from the long-standing fee-for-service culture that implicitly rewards holding data as a competitive advantage to the new shared-risk payment reform models that prioritize performance and rely upon open, accessible data necessitates the kind of across-theboard changes outlined above changes that are as much about culture and values as they are about policy and technology. WHICH CHALLENGES SHOULD HDC TAKE ON IN 2014 TO ADVANCE KEY HEALTH DATA OPPORTUNITIES? HDC can play a unique, effective, and neutral role in shaping and enrolling stakeholders in a shared vision of the future. The window of opportunity that is now open due to the ACA and other national reform efforts creates an urgency to prioritize and execute a small number of high impact, timely programs. The group supported HDC s goal to adopt programs and apply resources on specific projects and programs where it is exclusively positioned to be successful rather than attempt to solve a wide range of problems or those for which others are better positioned. HDC Summit Whitepaper Health Data Consortium Share with permission 8

Two criteria emerged for choosing projects and problems: 1) Will it have substantial and catalytic impact on sharing and using health data productively to create system-wide value? 2) Is it compelling to HDC s position and mission? Does it answer the question: If not HDC, then who? An important question emerged: If not HDC, then who? With this lens, the group formulated areas that are both high impact and ripe for change. Five key themes emerged for HDC to pursue: Shape, advocate, and educate for open health data policies and regulations Prioritize and target high value data sets and advocate for their liberation Develop a multi-stakeholder vision and governance framework for U.S. health data Lead efforts to find responsible national solutions for linking patients securely and accurately to their own patient data Envision and construct a patient-centered view of health information that truly involves the patient-consumer in their own data management The meeting concluded with an acknowledgement that the day s expansive, high level discussion needed follow-up to delve into specific issues. To move beyond the conceptual, a leadership community for open health data must form, convene, and focus on goal-setting and action steps. FINAL COMMENTS This summit was convened with a dual purpose: to envision the future of health data, and to set forth ideas for how HDC may best play a catalytic role that will have a major positive impact. While HDC strives to find common ground so that all stakeholders interests are met to the best possible extent, the organization is also in a position to lead where perfect consensus may not be possible. As the open health data movement gathers momentum across the health care ecosystem, innovative collaboration can overcome barriers and create the power to successfully transform health care. To be successful, each segment of the health care While HDC strives to find common ground so that all stakeholders interests are met to the best possible extent, it is also in a position to lead where perfect consensus may not be possible. ecosystem must contribute to shaping the conversation and the issues. HDC looks forward to the challenges and rewards of bringing together disparate entities to dramatically improve health, health care, accessibility, and affordability for all Americans through the constructive and appropriate use of health data. HDC Summit Whitepaper Health Data Consortium Share with permission 9

ACKNOWLEDGEMENTS The Health Data Consortium wishes to acknowledge GE Healthcare and GE Healthyimagination for their support in hosting the Health Data Leadership Summit; Robert Mittman for moderating the day; Deirdre Crowley for providing visual representation of the discussion; and Karen Propp for drafting this paper. HDC Summit Whitepaper Health Data Consortium Share with permission 10

APPENDIX The Health Data Initiative The leadership summit took place against the backdrop of stipulations recently introduced by HHS to the Health Data Initiative (HDI). The initiative s goal is to make health data openly available, disseminate the data broadly across the health and human services ecosystem, and continuously educate internal and external participants in the ecosystem about the value of the data. iii Preliminary responses to health data releases have been, in some cases, phenomenal. For example, CMS released charge master data in May 2013 that made public for the first time the widely varying and highly inflated prices hospitals charge for common procedures. iv In the first week alone, the data sets were downloaded 200,000 times. Participating Organizations Below is a list of organization in attendance at the Health Data Consortium Leadership Summit: Bio-Reference Laboratories Center for Democracy and Technology Centers for Medicare & Medicaid Services Code for America Cornell University EgonZehnder Esri Feinstein Kean Healthcare Florida Blue GE Healthcare GE Healthymagination Health Care Cost Institute, Inc. Healthways Highmark Health Leadership Council Luminary Labs Lux Capital McKinsey & Co. Oracle Oscar Insurance Company Pacific Business Group on Health Predilytics Providence PricewaterhouseCoopers LLP Quintiles Startup Health The Advisory Board Company UnitedHealth Group U.S. Department of Health and Human Services i "The Big Data Revolution in Health Care, Accelerating Value and Innovation", http://www.mckinsey.com/insights/health_systems_and_services/the_bigdata_revolution_in_us_health_care ii http://www.healthit.gov/patients-families/blue-button/about-blue-button iii Health Data Initiative Strategy & Execution Plan Released and Ready for Feedback, Damon Davis. http://www.healthdata.gov/blog/health-data-initiative-strategy-execution-plan-releasedand-ready-feedback iv https://www.cms.gov/research-statistics-data-and-systems/statistics-trends-and- Reports/Medicare-Provider-Charge-Data/index.html HDC Summit Whitepaper Health Data Consortium Share with permission 11