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December 17, 2014

“A Henry Ford Moment”: HCCI & NORC Establish a Data Enclave for Researchers and Academic Partners

Health care data needs a ‘Henry Ford’ moment to move from a realm of unconnected and unwieldy data to a world of connected and matched data with a common support for licensing, legal, and computing infrastructure.” -David Newman, Executive Director of HCCI

HCCI has made the health care claims of more than 50 million Americans available to academic partners and researchers around the U.S. through a new Data Enclave administered by NORC at the University of Chicago. David Newman, HCCI’s Executive Director, and Timothy Mulcahy, NORC’s Data Enclave® Program Director, recently sat down to discuss their joint effort on this project.

What is a Data Enclave and what led you to create one?

DAVID NEWMAN: A Data Enclave is a place where data resides. What’s unique about the HCCI enclave, though, is that it provides a deep level of security and all of the tools and computing capacity that a researcher needs to work with confidential, sensitive health care data. As our health care datasets get larger and larger, many researchers don’t have the resources necessary to work with them. Our partner, NORC, has built a scalable computer environment that ensures authorized researchers are able to access and work with our data in a manner that protects individual privacy and complies with HIPAA.

TIM MULCAHY: Ten years ago, the prevailing model for sharing data was to either send out confidential data through the mail or require researchers to travel great distances to brick and mortar entities where data were stored. Not only is that expensive, but it also presents significant risk of a data breach. Rather than pushing data out, the Data Enclave ensures that the data never move. The data remain in a secure, impervious environment, and approved researchers are granted a safe way to access data remotely.  

What do HCCI and NORC hope to achieve by partnering together? 

DAVID NEWMAN: In our assessment, NORC has the deepest understanding of how to build a Data Enclave. They’ve successfully done this with other federal agencies and organizations, they understand the requirements for a HIPAA secure health care environment, and they are scalable – which means that they will be able to store our datasets no matter how much they grow or change. As a fellow nonprofit organization, NORC’s mission and values align with our own and they understand what we want to achieve. Advancing research and decisions that affect health care spending, quality, and cost is as important to us as it is to them.

TIM MULCAHY: Since 2006, NORC has provided its partners with a secure platform where they can host and build a research community around their data. Our Data Enclave is different in that it was designed by us: the researchers, the end users of these data. After working in this field for many years, we know how difficult it is to get a hold of large confidential datasets for research purposes. As the system engineers and integrators of the data, and actual users of the data we value the advancement of public interest research first and foremost.

Who is going to benefit most from this? How is having a common portal going to advance research on health care?

DAVID NEWMAN: The advantage of the Data Enclave is that it allows us to grant researchers more timely access to data. When we are able to study our health care system with faster, larger datasets, everyone benefits – consumers, researchers and the policy community. At the end of the first year of the HCCI Data Enclave, we expect to have more than 20 research projects using HCCI’s datasets. That’s a huge jump historically for us and it means that our data will be advancing a larger share of health care cost and quality research. The Data Enclave will also foster collaboration among our partners. The beauty of this enclave is that it allows researchers to collaborate across teams, share code, and benefit from having a common portal with all the research tools they need to access our datasets.

TIM MULCAHY: The Data Enclave was designed not only to securely store sensitive data but also to retrieve information more efficiently and speed up computation times. In other computational settings, a researcher could request information from a dataset that would literally require 4-6 weeks to process. With our Data Enclave, the same request will only take 3-4 hours. The fact that you execute the same queries at orders of magnitude more quickly has huge implications for research and policy decisions in health care. The discovery potential here is enormous. With the Data Enclave, we can make faster, more informed decisions. This is not only a matter of speed, but accuracy. We have larger datasets and so our findings are more precise and the results are true results.

With access to HCCI’s claims data, what new aspects of health care spending trends will researchers be able to study that they couldn’t before? What’s been missing for them up until now?

DAVID NEWMAN: Until recently, there has been a lack of timely, detailed information to track the components of national commercial health care spending, support analysis of underlying cost drivers, and explore the reasons for cost and spending variations across the country. Now, with the Data Enclave, HCCI’s claims data from over 50 million privately insured Americans, will become available to authorized researchers and our academic partners.

TIM MULCAHY: From a researcher’s standpoint, the most astonishing thing to me about the HCCI Data Enclave is that it will hold a significant percentage of the national data on privately insured lives. Never before have we provided that level of access to data, and it will only increase as more commercial payers participate. We will be able to track episodes of care and identify trends in ways we’ve never been able to before. The focus of this whole endeavor is to take the ambiguity out of the health care arena, monitor emerging trends, and foster cost and price transparency.

What will this mean for the future of health care data research? What information has not been tapped into yet?

DAVID NEWMAN: We hope the Data Enclave will give other potential data contributors far greater comfort knowing that their information can be protected in a secure environment that it is being used solely for the purposes of non-commercial, academic research. Our ultimate goal for this project is to create a “one-stop shop” of health care data, which is something that does not yet exist. In addition to claims data, we would also like to see hospital and clinical data, and electronic medical records stored in one place and linked together so that we can accomplish more sophisticated research on health care outcomes and quality. I think we’re moving in the right direction and already are offering what researchers have lacked in the past: timely and large datasets on the health care practices of privately insured Americans.

TIM MULCAHY: HCCI has really changed our perception of what’s possible. The best scenario for the future of health care data research is that we would have access to public and private sources of data in a single, secure Data Enclave. With such large datasets, there is enormous potential for research breakthroughs. We would be able to track episodes of care for individuals, study disease pathologies and even look at instances of extremely rare conditions that might affect 1 in a million people. There is so much that we are capable of when we integrate different datasets. We are already seeing this happening in the State of Maine, for example. Maine is not just tracking claims data, but also clinical inpatient and outpatient data from hospitals. By linking the claims data and clinical data, we will be able to find out the actual cost and quality of various procedures across the state at the facility and physician level.

Read more about the Data Enclave.

October 23, 2014

New Report: Spending Per Privately Insured Grew 3.9% in 2013, as Falling Utilization Offset Rising Prices

October 28, 2014: The fourth annual health care cost and utilization report from HCCI

October 17, 2014

HCCI and NASHP Release RFP for State Health Policy Grant Program

October 17, 2014: The Health Care Cost Institute (HCCI), in collaboration with the National Academy for State Health Policy (NASHP), today released a Request for Proposals (RFP) for the new State Health Policy Grant Program. A webinar to answer researchers’ questions regarding the RFP will be held at 3:00 pm (ET) on October 27, 2014.

September 22, 2014

New HCCI Study Finds Young Adult Health Care Use Rose After ACA

September 24, 2014– A study released today by the Health Care Cost Institute (HCCI) found that per capita health care spending for young adults (ages 19-25) with employer-sponsored insurance (ESI) grew at a rate nearly double that of other adults (ages 26-64) during 2011 and 2012, the first two years after implementation of the Affordable Care Act (ACA; Section 1001) that allows parents to include their adult children in family health plans.

September 9, 2014

HCCI and NASHP Announce New Grant Program for State Health Reform Research

September 9 , 2014: The Health Care Cost Institute (HCCI) and the National Academy for State Health Policy (NASHP) announced today that they are launching a new grant program to fund research studies that will analyze how the states are implementing the Affordable Care Act (ACA) and other health reforms.

September 4, 2014

Assurant Health, NCQA, Harvard Pilgrim, Health Net, Kaiser Permanente and Partners Healthcare Join Health Care Cost Institute Initiative to Advance Health Care Cost and Quality Transparency

September 4 , 2014: The Health Care Cost Institute (HCCI) announced today that Assurant Health will join three other major health insurance companies, Aetna, Humana and UnitedHealthcare, to work with HCCI as it develops free online tools that will offer consumers the most comprehensive information about the price and quality of health care services.

August 26, 2014

Vermonters Spent Less on Health Care, While Spending Grew Faster Than National Average in 2007-2011

August 26 , 2014: Vermonters with employer sponsored health insurance spent less on health care but their spending grew faster than the national average in the years before implementation of the state’s health reform law, says a new study from the Health Care Cost Institute (HCCI) prepared in cooperation with the Green Mountain Care Board (GMCB).

August 4, 2014

Sluggish Economy, Not Health Reform, Drove Slowdown in Health Spending, Says Health Affairs Study

August 4 , 2014: Approximately 70 percent of the recent decline in health care spending growth from 2009-2011 was due to the economic downturn, and not to other factors such as health sector responses to the Affordable Care Act, according to a new study published in the August issue of Health Affairs.

July 8, 2014

Health Care Cost Institute's National Cost and Quality Reporting Effort Gains Momentum With CMS Granting HCCI Access to Medicare Data

July 8, 2014: The Health Care Cost Institute (HCCI) announced today that the Centers for Medicare & Medicaid Services (CMS) has certified HCCI as the first national “Qualified Entity”

May 14, 2014

Major US Health Plans Agree to Give Consumers Free Access to Timely Information About Health Care Prices to Foster Greater Transparency

May 14, 2014: — The Health Care Cost Institute (HCCI) announced today that it will work with three of the nation’s largest health insurance companies to develop and provide free consumer access to an online tool that will offer the most accurate and timely information about the price and quality of health care services.

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