Since data could be exchanged, providers have been accused of hoarding it.
Government pressure and business incentives may be changing that.
CMS Administrator Seema Verma told a packed room of health care execs earlier this year that it would no longer be tolerated.
"Let me be crystal clear, the days of finding creative ways to trap patients in your system must end. It’s not acceptable to limit patient records or to prevent them and their doctor from seeing their complete history outside of a particular healthcare system," she said speaking at HIMSS in March.
In addition, within months the Office of the National Coordinator, as mandated under the 21st Century Cures Act, will issue a proposed rule to set ground rules to prevent data blocking. Efforts tackling the issue couldn't have come at a better time.
At the same time, digital health startups are beginning to accrue value and build out robust data sets. From platform companies such as Vida Health to digital therapeutics like Omada Health, big data is becoming more important than ever. Roche, for example, was willing to shell out $1.9 billion to acquire oncology EHR company Flatiron Health, largely for its data set.
As these tools and datasets proliferate, providing interoperability will be an important milestone for transitioning to the next stage of American healthcare delivery, Allscripts CEO Paul Black said at HLTH 2018 earlier this month.
Data sharing among disparate parties will be critical to realize the benefits of integrating new tools into the clinical setting. Companies may be more inclined to share under the pressure of government and business incentives.
The cause for concern
The universe of digital health companies is expanding. Digital health funding for the first quarter of this year hit a new high of $162 billion across 77 deals, up from $141 billion in the same period last year, according to Rock Health. Among the top value propositions was disease monitoring as well as consumer health information and R&D catalysts.
What many of these startups have in common is the need for aggregated data that cross the silos of multiple health record systems. Getting at that data can be difficult, if not impossible at times, but interconnectedness is imperative if the next generation of digital health solutions are to realize their potential. “It’s been improving a little bit over time, but traditionally it’s been the case it’s very hard to get the data out of the health record system,” Bill Evans, managing director of Rock Health said in an interview.
Stephanie Tilenius, CEO of Vida Health, acknowledges the risk of data hoarding.
“Over the past few years, IoT and smart sensors have led to an explosion of connected devices and, in turn, an explosion of different and closed (or blocked) data formats,” she wrote to Healthcare Dive in an email. Digital health firms that aggregate data are all working to increase data sharing, but each is responding in its own way, “which is endemic to the problem itself,” she wrote.
Vida provides personalized health coaching and programs for patients who can then share data and insight summaries with providers.
Interoperability and data sharing with competitors is often “an afterthought,” says Dan Wilson, founder and CEO of Moxe Health, which facilitates bidirectional movement of clinical data.
“All of a sudden you’re big, you have a lot of data, people are asking for access to it and businesses, consistently, feel they’ve earned the right to that proprietary advantage,” he said.
Evans said he sees Verma’s admonition as a call to EHRs to break down their silos so innovators can aggregate data in new ways to improve health and healthcare processes. The challenge is getting established companies to tear down their walls.
Data sharing importance increasing to manage conditions
With the move to value-based payment models, providing clinical or predictive patient insights to providers and insurers can increase the importance of a dataset.
At Omada Health, an individual’s percentage of weight loss is reported to substantiate outcomes-based billing, and health information is provided back to participants. Users also have access to information through a real-time, online dashboard, Lucia Savage, chief privacy and regulatory officer at diabetes coaching firm Omada told Healthcare Dive in an interview.
Meanwhile, Moxe also works with providers and insurers to facilitate the exchange of clinical data to support billing claims. But it doesn’t stop there, Wilson said. As insurers accrue data, they have a much broader view of what it might mean for gaps in care.
At UPMC, reducing information blocking meant creating a data extraction layer in its network that “allows for us really to have data as an asset across our organization and allows for us to create a rich ecosystem of innovations on top of the data that are adherent to national standards and FHIR-ready,” Rasu Shrestha, chief innovation officer at the University of Pittsburgh Medical Center, told Healthcare Dive in an interview.
UPMC is pushing this framework with some of its portfolio companies at its innovation arm UPMC Enterprises, such as Health Catalyst. Through a process called late-binding architecture, researchers and providers can extract information and enable clinical and operational applications to occur atop the Health Catalyst platform, Shrestha said.
“At the end of the day, that really is what the conversation should be about,” he said. “It’s less about the data and more about the knowledge and the information you garner ... and making those attributes then actionable at the point of decision-making.”
Breaking down traditional barriers
For EHRs, companies like athenahealth and Allscripts realized fairly early on that they needed to focus on an open platform, notes Wilson. But others have been slower to do so. In some cases, vendors have turned it into a business model with fees to gain access to data — usually in the 15% to 30% of revenues level, he said.
“I would like to see more focus on APIs that make data available,” Wilson said.
He would also like to see a more supportive environment for those who speak out about data blocking. “Everyone’s afraid of doing it,” Wilson says. “Almost by definition, the people who are most impacted are the ones with the least amount of power in the market. And so if you come forward as your standard whistleblower and you don’t have the right protections, it’s going to be very costly.”
Those costs can be the death knell for an early startup. It can take months to work through an allegation of data blocking, during which investors and customers are likely to shy away. “As a result, people are suffering in silence trying to figure out how to persevere and make something happen,” Wilson said.
The 21st Century Cures Act, signed into law by former President Barack Obama, encourages interoperability of EHRs and patient access to personal health data and discourages information blocking. President Donald Trump's administration last October issued guidance for providers on when and how to attest they are not engaged in data blocking and are willingly sharing information with patients. Under the Cures Act, providers and EHR vendors that engage in data blocking could face fines of up to $1 million per violation. The guidance is aimed at providers participating in the Quality Payment Program’s Merit-based Incentive Payment System.
In addition, CMS in its hospital inpatient payment program proposed rule in May called for feedback on whether issuing a new condition of participation for hospitals to "require electronic exchange of medically necessary information" would help to reduce information blocking.
Some involved in the digital health world would like to see more clarity from the government on what is and is not allowable in terms of data exchange. "If I had a magic wand, it would be that HHS doubles down on helping provide industry guidance around how to deal with the emerging complexity,” Evans says.
Here’s why digital health companies are likely to share
As the digital health field matures, companies are moving beyond fitness trackers and basic monitors to tools that seek to offer deeper insights into an individual’s personal health status and help inform care decisions. The challenge isn't so much about who has access to the data, but what new and interesting ways developers can use the same data. The common need for data access is fueling a move away from proprietary file formats and any perception of data blocking, some observers say.
“Startups that are worth their weight in salt have totally adopted a much more open architecture and … business model [that] is not tempered on blocking of information,” Shrestha said. “Their business model is creating value out of insights that can be generated from the data.”