Patient-controlled data: The key to interoperability?
The barriers to interoperability are numerous and frequently discussed. Some experts point to vendors, saying they're guilty of information blocking for business reasons, or they have no economic incentive to share healthcare information. Others say data sharing is too expensive and there are no economic incentives to share healthcare information. Others still indicate a lack of technical capability.
Sumit Nagpal, co-founder and chief architect of health outcomes company LumiraDX Holdings Limited and CEO of LumiraDx USA, says many of these issues are red herrings, and any remaining barriers can be solved with an individual "bill of rights."
"The red herrings include lack of standards, limited technical capability in health and social care systems, lack of security in being able to transport or store data in a secure enough way, regional and national laws around data privacy and information governance," he says. "Many of those barriers are surmountable."
Mr. Nagpal says these barriers aren't at the heart of the interoperability question. As it is, many provider and vendor organizations are able to facilitate data exchange with other organizations of their choosing. And yet, patient information isn't easily available to help deliver informed, safe and efficient care.
Mr. Nagpal argues the issue here is one of who controls patient data — is it the patients themselves or care providers and vendors? He says if patients control their data — choose who gets access to it and see who's doing what with it — many of the proposed barriers to interoperability would dissolve.
"Being able to access our own information from across our care team in a joined up manner, and then being able to determine who can access that information and for what uses, I think of these as fundamental rights," Mr. Nagpal says. "Given these rights, each one of us can grant any member of our care team, including our friends and family, researchers and any innovator with an interesting solution, with access to our data under our control."
What's more, he says new opportunities to use data in beneficial ways to both individuals and organizations would emerge in this model. Access to data offers the opportunity for proactive intervention, better outcomes and enhanced innovation, according to Mr. Nagpal.
It's important to note Mr. Nagpal is not discussing data ownership, which opens an entirely different Pandora's box; rather, the key question is data control. Mr. Nagpal says expanding the control of data beyond providers and vendors to individuals is entirely doable in existing clinical systems and health information exchanges. But instead of providers having the say over who they share the data with, individuals are the ones calling the shots. It's the same technology, just extended to enable patient control over their own data.
"Systems that hold our health and social care data need to become accessible through uniform APIs – these don’t need to be invented from the ground up, as there are several very good options to choose from," Mr. Nagpal says. "With APIs and our bill of rights in place, we can ourselves give access to our information to anyone or any system we choose."
Mr. Nagpal does say some current clinical systems and HIEs do need to be modernized a bit, by adopting modern APIs that allows them to be queried, for example. He says one characteristic HIEs do not embody yet is the ability for any care provider in any system to access data in HIEs "without undue cost [and] without degradation to the quality of the information."
When interoperability became an industrywide goal, Mr. Nagpal says healthcare started changing digitization and automation, but the industry didn't tackle the fundamental issue of finding a meaningful way to exchange data to improve clinical outcomes. "The industry wound up focusing on the wrong problems," he says. "We forgo the why and focused on the how, and we wound up automating the kinds of things that were easy to automate, the low-hanging fruit, rather than taking on the real challenges."
Automating processes is relatively easy; changing the way care is delivered is the hard part, but that's what will deliver results.
"To succeed, these organizations will have to embrace individuals as their allies and partners, giving [patients] more control," Mr. Nagpal says. "Individuals in turn will have to become more accountable as well, using this control to become more self-determining. That is how we will actually achieve the triple aim of improved outcomes, reduced costs, and a better experience for individuals and our care teams."
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