We are here
The last few years have been truly remarkable for the health care community. The availability of electronic health data (EHD) and the new ways in which stakeholders are using these data is beginning to shape health system transformation. Like all great, evolving social endeavors, many individuals and organizations from the public, nonprofit, and private sectors are making contributions to drive this transformation, and the pace of change is fast enough that it can be a challenge to keep up with the tremendous innovation and new opportunities in the field.
About the EDM Forum
Since 2010 the EDM Forum has worked with leaders at the cutting edge of research and quality improvement using EHD.
In the context of all this activity, the EDM Forum Review highlights major events, initiatives, and emerging evidence using EHD to transform the U.S. health system. This year the Review addresses the convergence of EHD infrastructure investments - which have arguably reached a tipping point to enable rigorous analysis - along with a recent EHD innovation imperative stemming from the Department of Health and Human Services’ new goals for value-based payment.
A number of key investments and initiatives are promoting this evidence-based system transformation, including:
- Significant new investments from the public and private sectors in EHD infrastructure and science;
- The adoption of electronic health records (EHRs) as a result of the Health Information Technology for Economic and Clinical Health (HITECH) Act and Meaningful Use program;
- Patient engagement and a growing marketplace for mobile health technology; and
- Value-based payment goals to ensure that Medicare and other payers are paying for care based on quality rather than volume.
The Review addresses each of these efforts below in the context of the evolving EHD infrastructure and new payment reform goals that together create a unique opportunity to improve health systems.
An Infrastructure to Facilitate Transformation
Based on the EDM Forum’s scanning efforts, the events, trends, and innovations over the last 12 to 18 months show a maturing EHD infrastructure and a growing momentum toward more effective uses of EHD within the U.S. health system. This new energy is increasing the diversity within the community using EHD and is helping create stronger connections across sectors and disciplines. Examples include:
- Expanding networks and collaborations
- (e.g. the Patient Centered Outcomes Research (PCOR) Network, the Observational Health Data Sciences and Informatics program, the Precision Medicine Initiative million volunteer cohort, and the High Value Healthcare Collaborative);
- New and improved tools to promote interoperability and collaborative work
- (e.g. the Commonwell Alliance, Fast Healthcare Interoperability Resources, CIELO, and the Office of the National Coordinator’s Interoperability Roadmap);
- Increasing access to richer sources of data
- (e.g. Centers for Medicare and Medicaid Data Navigator);
- Private sector innovation and business intelligence
- (e.g. ResearchKit from Apple, Inc., OptumLabs Research and Innovation Center, the Data Incubator fellowship, and FlatIron Health)
- Personalized medicine and the integration of data from sectors outside of health care
- (e.g. Sage Bionetworks Synapse, 23andMe, purplebinder).
Significant Public and Private Investment
Both public and private investments are building on the foundation laid by earlier public investments to increase health IT adoption and build collaborative networks to transform EHD into knowledge and discovery. In the last ten years, over two billion dollars in public support for clinical research networks, quality improvement efforts, informatics, and novel approaches to build learning health systems has contributed to improving the capacity to conduct rigorous analyses.
Continued Commitment from Public Sources
Among these efforts, funding from the Food and Drug Administration (FDA) for the Sentinel program (formerly mini-Sentinel) in 2009, and the ONC Beacon Community program, along with Agency for Healthcare Research and Quality (AHRQ) grants for CER using EHD in 2010, provided foundational support to bring collaborators together to answer key effectiveness and quality questions. Similarly, the National Institutes of Health’s (NIH) Health Care Systems Research Collaboratory was initiated in 2012 to implement a series of pragmatic trials on topics ranging from hemodialysis to suicide prevention and strategies to reduce healthcare associated infections. New support from CMS, AHRQ, NIH and other federal sources has also supported the continued development of national collaboratives such as the High Value Health Care Collaborative and the HMO Research Network, which changed its name to the Health Care Systems Research Network in 2015 to reflect the needs of organizational members, the breadth of partnerships, and diversity of health systems within the network.
Over the last 18 months, the most significant new investment related to EHD has come from the Patient-Centered Outcomes Research Institute (PCORI) for the development of PCORnet, as a ‘network of networks’ bringing together 30 health systems and organizations to conduct CER. PCORnet integrates large clinical data research networks (CDRNs) with a set of Patient Powered Research Networks (PPRNs) to find new ways to bring the patient voice to PCOR.
Since May 2015, PCORI’s board has approved the first set of three PCORnet demonstration studies. The first is a clinical trial comparing the benefits and harms of a low- and regular-strength daily doses of aspirin among heart disease patients. The second and third are studies on obesity - one focused on the health benefits and safety of bariatric surgery and another focused on the influence of antibiotic use on weight gain in childhood. Recently, Phase II funding for PCORnet was awarded to 34 data networks (13 CDRNs and 21 PPRNs), many of which participated in Phase I.
Private Sector Deepening Its Engagement
Meanwhile, in the private sector, stakeholders are already hard at work to capitalize on new business opportunities leveraging EHD to improve patient engagement and the quality, efficiency and value of health care. EHD is a prime resource for entrepreneurs, startups, and well-established big businesses alike who have sought to bring new analytic and information products - broadly referred to as ‘business intelligence’ tools - to health care. 2014 was a ‘record breaking’ year for digital health funding, which surpassed $4.1 billion, according to a report on digital health funding from Rock Health, and 2015 appears poised to far exceed 2014 for U.S. medical startups.
Other large companies are making significant health and data related investments, including some to launch new companies. According to the Wall Street Journal, “one-third of the money Google Ventures invested in 2014 went to health care and life-sciences companies, up from 9% each of the prior two years.” More recently, in August 2015, Google’s leadership announced a major corporate restructuring, creating Alphabet Inc., a holding company within which Google’s existing and future subsidiaries, projects, and products will exist. Life sciences is expected be one of Alphabet’s major focus areas, and the company has already released plans for a standalone company within Alphabet.
This year also saw the Department of Defense (DoD) award a mammoth $4.3 billion contract to a partnership between government contractor Leidos and Cerner Corporation. The ten-year contract will support the overhaul of the DoD’s EHR system for active military members and retirees.
Open to Open Data
Over the past few years there has also been a substantial increase in the amount of health data available for research. Notably, the Centers for Medicare & Medicaid Services (CMS) has continued to increase the accessibility of their data. The agency has a mandate from the Affordable Care Act to share claims data to help consumers evaluate provider and supplier performance, which has led CMS to increase access to the data that are available to researchers to now represent approximately half of Medicare spending.
The CMS Data Navigator, managed by the relatively new Office of Information Products and Data Analytics, now contains over 400 data sources organized and searchable by program, setting/type of care, topic, geography, and document type. The data include more than just claims data, providing researchers with more robust resources to generate evidence and analyses about the health system.
There are three different types of data files available. Most are publicly available for free, others are available for purchase, while remaining files -- many of which include identifiable data -- are restricted for use only for use under certain conditions. In September 2015, CMS agreed to enable access to Medicare data for researchers interested in creating predictive models or care management products and tools, a significant shift in policy to make CMS data more available to all sectors.
This move toward more open health data and better data sharing has been bolstered by leaders in the personalized health movement who are calling for more power for patients to contribute to and control their own health data for care as well as for research purposes. For example, Kathy Giusti, founder and executive chairman of the Multiple Myeloma Research Foundation, recently testified before the Senate’s HELP committee about the improved patient outcomes her foundation has seen after working to improve data sharing and use related to the blood cancer multiple myeloma. Building in part on the Blue Button initiative, Get My Health Data is the newest entrant into this effort as of this summer, and seeks to make it easier for patients and consumers to compile their own health information and use it to improve their health and care.
Another step forward toward ensuring patient’s autonomy and voice is recognized in research and quality improvement is the formalization of the Patients Included charter. Patients Included provides a mechanism to ensure conference organizers can demonstrate their events are committed to incorporating the experience of patients as experts in living with their condition while ensuring they are neither excluded nor exploited. Concordium 2015 is pleased to be one of the first health research conferences to be accredited using this self-assessed process. Concordium meets all five of the charter’s clauses.
Data for Health, Beyond Health Care
As demonstrated by Tomines and colleagues, EHD is a powerful resource for public health to successfully monitor the health of populations, conduct real-time surveillance, and facilitate appropriate public health interventions. Yet, working from the realization that health means more than just the absence of disease, innovative efforts such as purplebinder, which organizes information on community services, will become increasingly important to bring to bear in addressing community health needs.
Similarly, the integration of data from sectors outside of health care is being emphasized by organizations such as the Robert Wood Johnson Foundation as part of its new mission to build a Culture of Health (COH). Among new culture of health initiatives, the RWJF’s new initiative Data Across Sectors for Health (DASH) seeks to support collaborations among community organizations to improve health by sharing data and information with entities outside of health care.
And It’s Getting Personal
Many in the private sector are now also increasingly focused on the personal aspect of health. What was once defined as the ‘health care system’ is becoming much more dynamic and data-driven, bringing in data from a host of consumer markets that influence wellness. For patients and care providers alike, these changes are redefining the concept of how to achieve health. As noted by a recent Consumer Reports brief, Your Medical Data: What you Need to Know Now, there is growing awareness of opportunities for consumers and patients to get involved in using their own information to promote health.
Demand for wearable devices is helping drive this trend. Gartner reports that 68.1 million wearable devices will be shipped this year, with many of them being used by consumers to track data related to health and wellness. The Washington Post reported earlier this year on the growing trend for consumers and patients tracking their health using wearable devices, while the surge of thousands of early volunteers willing to participate in projects using Apple’s ResearchKit demonstrates a strong public interest using health data to promote health.
The Innovation Imperative to Generate Value
The most significant signal of impending health system transformation in 2015 was HHS’ announcement in January that CMS is rapidly transitioning away from paying for volume of services to paying for value. Secretary Burwell set specific goals to achieve transformation in the way the U.S. pays for care by:
“....tying 30 percent of traditional, or fee-for-service, Medicare payments to quality or value through alternative payment models, such as Accountable Care Organizations (ACOs) or bundled payment arrangements by the end of 2016, and tying 50 percent of payments to these models by the end of 2018.”
As part of her announcement, the Secretary also launched the Health Care Payment Learning and Action Network, which will work with payers, employers, consumers, providers, states and state Medicaid programs, and other partners to expand alternative payment models into their programs and help the private sector shift toward value-based payment.
This shift toward paying for value rather than the volume of services provided will require coordinated and collaborative efforts in both the public and private sectors, and by necessity will rely upon access to EHD that can be shared, analyzed, and used rapidly in meaningful ways. The development of electronic clinical quality measures (eCQMs) that can capture value-based concepts is an effort in which CMS, measure developers, the National Quality Forum, and collaborators from the EDM Forum are actively engaged.
Major corporations and technology providers are also investing and building partnerships with health systems to provide services built on new innovations for which consumer and patient data play a central role in defining health. ResearchKit from Apple, Inc., OptumLabs Research and Innovation Center, and software platforms like those developed by Flatiron Health and Ginger.io were notable examples in 2015.
Health Data Specialists Wanted!
Your Next Job in Health Data Science?
EDM Forum contributors from delivery systems have identified eight key roles they see as the individuals designing and executing strategies for health system transformation.
- Chief Learning Officer
- Chief Data Scientist
- Vice President of Population Health
- Business Intelligence Developer
- Data Architect
- Vice President of Quality
- Chief Medical and Quality Officer
In this transition toward systems designed to respond rapidly to diverse sources of data and new evidence, it is important to recognize a dependency on highly skilled knowledge workers. There is a new and growing cadre of individuals who are designing and executing strategies for delivery system transformation, mirroring a national emphasis on the importance of data science, as indicated by the appointment of the first U.S. Chief Data Scientist and the creation of the U.S. Digital Service within the White House.
New job titles are proliferating in response. Some groups identify more than 70 titles associated with data science, and have provided interesting insights into career pathways for health information management.
These new leadership positions reflect a diverse and evolving set of employers and job functions - all with the common goal of leveraging EHD to drive business intelligence and improve outcomes. Integrating diverse perspectives into the EHD ecosystem in a way that facilitates team science and draws the best ideas from across disciplines is a compelling, near-term opportunity for the field.
It remains to be seen how these data science needs will be met, and to what extent to which software, consulting services, or in-house experts within health systems are required to generate the insights needed to improve the quality, safety, and value of care. Nonetheless, there is an expressed need among health system leadership for data experts and knowledge workers with domain expertise in health.
Shared Challenges Create New Opportunities
There is a long and exciting road yet to traverse to transform the U.S. health system using EHD and analytics. Along the way, we will need to overcome many shared challenges to achieve a fully-interoperable health system that learns from every interaction between patients, providers, and the public health system to promote health improvement. As a starting point, the EDM Forum has identified a priority set of challenges:
- understanding and improving EHR data quality for QI and research;
- improving the efficiency and utility of patient reported outcomes (PROs) in practice;
- accelerating the efficiency of electronic clinical quality measures (eCQMs) while improving the representativeness of eCQMs;
- improving the dissemination, transparency, and reproducibility of PCOR using EHD
- advancing clinical decision support and system redesign;
- advancing understanding of effective approaches to governance in learning health systems, QI, and research;
- integrating public health data and systems with data on health care.
In the past few years, the EDM Forum has made substantial progress in bringing the EHD community together to address each of these challenge priorities. A key part of this progress has been the creation of eGEMs (Generating Evidence and Methods to improve patient outcomes), the EDM Forum’s open access, peer reviewed journal which was created explicitly to provide a venue for translating and disseminating novel and useful EHD methods and approaches to redesign health systems.
Examples of unique areas of emphasis for eGEMs include a special issue on clinical decision support and user interface to improve patient outcomes with guest editor Tom McGinn of Northwell Health, and a special issue on using Health IT to enable community-level transformation - the largest collection of papers on lessons learned from the ONC Beacon Communities. A toolkit of governance resources and a forthcoming eGEMs special issue on health data governance is also underway, as is a toolkit on the use of PROs in practice. Ongoing work to characterize the quality of EHR data has resulted in several papers, and this work is continuing as a PCORI methods project in collaboration with the EDM Forum. In all, the EDM Forum’s collaborative projects have fostered a productive set of activities to advance progress against shared challenges, engaging nearly 200 collaborators from diverse backgrounds.
Some of these projects have led to functional changes in the nature of patient-centered research such as improving “informedness” of individuals at the point they consent to participate in research. Sage Bionetworks worked with members of the EDM Forum community and staff to create a design template and consent loop that was ultimately used in all five of the first ResearchKit apps released by Apple Inc. By combining the practical experience of the research, patient, and policy communities, the portable consent process is proof of concept that the consent can be simpler and potentially more informative with respect to study objectives and potential risks. Similarly, ongoing work on a new platform for sharing data and code, called CIELO, is being linked to a collaborative project to more rapidly develop, test, and implement electronic clinical quality measures in diverse settings and populations.
Over the past five years the EDM Forum has been privileged to engage several thousand leaders from research, patient, government, policy, health care delivery, industry (e.g. purchasers, delivery systems, pharmaceutical and life sciences or other), and payer communities. This experience has affirmed our philosophical commitment to collaboration and open science.
Whether your perspective is research, analytic methods, patient engagement, public health, or clinical care, improving health care in the U.S. is fundamentally a team sport for which transdisciplinary perspectives and public-private collaboration is critical to progress.
By working together we can doubtless travel farther and are more likely to make sustainable progress. For this reason it is important to get oriented within the ecosystem and identify the potential partnerships and efforts that can best support rapid progress.
We welcome your continued interest, engagement, and collaboration, and hope the EDM Forum Review is a useful resource to help map the journey forward.