Guest post by Chris Boone, CEO, Health Data Consortium.
Consumers are receiving more health data than ever, as evidenced by the myriad mobile apps (WeightWatchers, Mindshift, Nike+ Training Club, etc.) and wearables (FitBit, iWatch, Jawbone, etc.) now available. With health data so pervasive, health literacy has become a commonly discussed issue as it pertains to consumers’ ability to obtain and process healthcare information to make better healthcare decisions. But, with the advent of so much data, there must be a national emphasis on the importance of health data literacy, as well, to empower patients to leverage available data in a meaningful way that can improve their and their loved ones’ health outcomes.
The Health Data Literacy Landscape
There remain challenges to the health data movement – such as privacy concerns – and as a result, questions around how to improve health data literacy remain largely unexplored. The road to health data literacy starts with digital access to health information, and new technologies that seamlessly augment consumers’ daily health practices to enable better health decision-making. Interestingly enough, however, the rate at which health data entrepreneurs and innovators are producing incredible technologies may be exceeding the rate at which consumers are able to digest and use the information.
So, how do we leverage the opportunities provided by greater access to health data without overwhelming the consumer?
Data Visualization and the User Experience
Once data becomes accessible to consumers, data visualization is a key component to ensuring it is understandable and actionable. Consumers must be able to comprehend and digest data to put it to work.
In addition – and like in any other industry – the user experience must be a top priority when building new technologies. We need developers to build mobile apps, wearables, websites, etc. that are simple in design with an emphasis on providing useful and easily actionable data for consumers.
At Health Datapalooza, the acting Centers for Medicare & Medicaid Services (CMS) Administrator, Andy Slavitt, announced a new policy that for the first time will allow innovators and entrepreneurs to access CMS data, such as Medicare claims. As part of the Administration’s commitment to use of data and information to drive transformation of the healthcare delivery system, CMS will allow innovators and entrepreneurs to conduct approved research that will ultimately improve care and provide better tools that should benefit healthcare consumers through a greater understanding of what the data says works best in health care. The data will not allow the patient’s identity to be determined, but will provide the identity of the providers of care.
CMS will begin accepting innovator research requests in September 2015.
“Data is the essential ingredient to building a better, smarter, healthier system. The announcement is aimed directly at shaking up health care innovation and setting a new standard for data transparency,” said acting CMS Administrator Andy Slavitt. “We expect a stream of new tools for beneficiaries and care providers that improve care and personalize decision-making.”
Innovators and entrepreneurs will access data via the CMS Virtual Research Data Center (VRDC), which provides access to granular CMS program data, including Medicare fee-for-service claims data, in an efficient and cost effective manner. Researchers working in the CMS VRDC have direct access to approved privacy-protected data files and are able to conduct their analysis within a secure CMS environment.
“Historically, CMS has prohibited researchers from accessing detailed CMS data if they intended to use it to develop products or tools to sell,” said Niall Brennan, CMS chief data officer and director of the Office of Enterprise and Data Analytics. “However, as the delivery system transforms from rewarding volume to value, data will play a key role. We hope that this new policy will lead to additional innovation and insights from the CMS data.”
With more than 2,000 entrepreneurs, investors, data scientists, researchers, policy experts, government employees and more in attendance, the Department of Health and Human Services (HHS) is releasing new data and launching new initiatives at the annual Health Datapalooza conference in Washington, D.C.
Today, the Centers for Medicare & Medicaid Services (CMS) is releasing its first annual update to the Medicare hospital charge data, or information comparing the average amount a hospital bills for services that may be provided in connection with a similar inpatient stay or outpatient visit. CMS is also releasing a suite of other data products and tools aimed to increase transparency about Medicare payments. The data trove on CMS’s website now includes inpatient and outpatient hospital charge data for 2012, and new interactive dashboards for the CMS Chronic Conditions Data Warehouse and geographic variation data. Also today, the Food and Drug Administration (FDA) will launch a new open data initiative. And before the end of the conference, the Office of the National Coordinator for Health Information Technology (ONC) will announce the winners of two data challenges.
“The release of these data sets furthers the administration’s efforts to increase transparency and support data-driven decision making which is essential for health care transformation,” said HHS Secretary Kathleen Sebelius.
“These public data resources provide a better understanding of Medicare utilization, the burden of chronic conditions among beneficiaries and the implications for our health care system and how this varies by where beneficiaries are located,” said Bryan Sivak, HHS chief technology officer. “This information can be used to improve care coordination and health outcomes for Medicare beneficiaries nationwide, and we are looking forward to seeing what the community will do with these releases. Additionally, the openFDA initiative being launched today will for the first time enable a new generation of consumer facing and research applications to embed relevant and timely data in machine-readable, API-based formats.”
Earlier this year, Mobile Future released an infographic about the current state of digital health. The graphic detailed impressive statistics: Now, more than 247 million Americans have downloaded a health app for their mobile phones and 42 percent of U.S. hospitals utilize digital health technology. These numbers are increasing every day.
These impressive statistics would not been achievable without the liberation of enormous amounts of health data over the last few years, which has help catalyzed a new era of health innovation by giving innovators and entrepreneurs the resources to develop new products and tools to help the everyday consumer make better, more-informed choices about their health. The digital health arena has also become a major economic driver and is on an upward trend with no ceiling in sight. Rock Health reported in April that venture capital funding for digital health in Q1 of 2014 totaled almost $700 million, an increase of 87 percent from Q1 of 2013.
From the successful implementation of the Affordable Care Act through Healthcare.gov to newly released Centers for Medicare and Medicaid Services (CMS) data, both the demand for and ability to create new products that service consumer needs are at the forefront of investors’ minds. But with new opportunities for innovation also comes new risks and challenges. Along with privacy and security issues regarding the distribution of patient data which has been a hotly discussed public topic the last few months, concerns about storage, access, and sharing are on the minds of data distributors and data users alike.
At the Health Data Consortium (HDC), created as a public-private partnership, has the support of government, nonprofit and private sector organizations who all believe in liberation of health data for the public good. HDC has made a multi-stakeholder commitment to health data, which was reflected in the diversity of constituencies that attended our Health Data Leadership Summit in November last year. This leadership summit resulted in the release of our whitepaper on the multi-stakeholder perspective of health data priorities in the U.S. healthcare system.