BY GRACE MOEN

Openness is kind of old news. Finally. From startups to unicorns, open data is no longer a hot new idea approached with awe and ruffled feathers, but a standard of operating. Even so, it isn’t yet ubiquitously adopted. Ultimately the motivation behind allowing data to flow freely is to co-develop the kind of thriving future that open data and interoperability can provide. This means informed diagnosis, decreased costs, and better resources for more people, for instance. Former US CTO Todd Park said, “Data by itself is useless. Data is only useful if you apply it.” And apply it we will. But only after we open it up. And standardize it. And….

It’s Practical: If you’re familiar with the 5 Drivers of a Decentralized Future that Matthew and Indu have been espousing for the last year, there is a reason Interoperability is listed as Driver #1 – interoperability lays the groundwork for the other 4 drivers to exist. Interoperability is likewise contingent upon a system in which data moves freely and openly. “If your business model is based on owning or controlling access to data, this is pretty threatening because it (Blockchain) cuts out middlemen and pushes power to the edges of the network.” One to one data sharing isn’t useful, but a living system that responses to new information as it flows in and out would be.

Indu Subaiya has described the future of data sharing in healthcare as akin to that of a cell membrane, semi-permeable and un-siloed.

A Moral Stance: If we are to deliver care to the people who need it most, if we’re going to increase quality while we decrease cost, then we’re going to need more information. Even with the best intentions, no (hu)man is an island which is why we invented Machine Learning to help us out. The data patterns technology can discover are endless and often reveal underlying causes to murky symptoms and life threatening illnesses. Data saves lives. I would argue that a commitment to open data sharing is not only a selfless act, but also an act of social good. It is morally right. Not ethically, which refers to a set of external rules found in workplaces or religion for example. I mean morals – your internal compass of what is right and what is wrong. Providing quality healthcare, that won’t break the bank, to all people is the right thing to do. “Providers must embrace collaboration for the common good” says Stanley Huff, CMIO of Intermountain Healthcare. From Patients to Providers, to Public Health initiatives and Payers, when data is open and free flowing every experience with the healthcare system advances to the next level. This is the baseline ethos from which all other technologies and services should build from.

“Get your ego out of the way and share the data!” – Joe Biden

Where It MattersThe greatest opportunities for impact occur in four big areas…

Public Health – Entities both federal and municipal have adopted open data strategies as a means of measuring the impact and effectiveness of their public health programs. Citizens are even building apps on top of public data records to address the needs of their community on a hyper-local level.
Patients – Let’s use a very basic, but meaningful example here. Imagine you see a specialist for some lab tests. Those results need to get relayed to your PCP through your EMR. If this happens successfully, it’s interoperability! More of this, please.
Providers – More effective care delivery through greater insights, shared knowledge, cross referencing conditions, tracking outcomes, and thus the ability to course correct as necessary. Essentially, open data (paired with machine learning of course, to make sense of it all) is a learning tool so providers can do their jobs better.
Payers – I think we can all agree that insurance is a nightmare – bills from visits that were supposed to be covered, confusing codes, in-network, out-of-network, OH MY. Blockchain is perhaps the most exciting proposition to enter the healthcare space in years if for no other reason than it will reduce the onslaught of figurative consumer headaches. Applying blockchain technology in health care means we’re likely to reconcile data from disparate sources from the start.

I’m reminded of what Mark Ganz said during his keynote address at Health 2.0’s WinterTech conference during JP Morgan week last month, “we ought to spend more time focusing on why we’re in it and who we’re in it for.” That’s right. Ultimately we’re in it for ourselves, for our children, for our grandchildren. For each other. For the future.

#WINAllscripts has been leading the charge in API adoption for some years now with their plug and play-like platform that developers can build new technologies and applications on top of. Not to be outdone, Epic opened up their API in 2017, thus signalling a refusal to be made obsolete by the more nimble and comparatively newer players.

The advent of FHIR and SMART on FHIR has also been a huge game changer. “FHIR (Fast Healthcare Interoperability Resources – a next-generation standards framework created by HL7) is radically changing the way we think about integration of innovative applications, making them faster, easier, and less disruptive to workflow. It allows developers to create medical applications which can be easily integrated into existing systems. SMART on FHIR is a related utility which allows web apps to run inside a browser so clinicians can use them without leaving the EMR environment.” – Matthew Holt and Indu Subaiya.

#FAIL: As much as I’d like to sit on my high horse and preach that open data is 1000% fail-proof, it’s not entirely true. Equifax famously took a major hit for their breach in privacy of consumer data. And there are the skeptics – that slice of the American population who are hypervigilant about personal data protection. And they’re not totally wrong. Should consumers blindly trust technology? Or should technology be built to be trustworthy? It’s not as chicken-and-egg as it may seem… I propose that it must start with the technology. Consumers have been burned and like in any relationship when trust has been broken it will not only take time, but also a rigorous and consistent effort moving forward. Transparency and anonymity is appreciated: how the data will be used and where, and this should be communicated often and in layman’s terms. Consumer trust is earned, not guaranteed.

Now What? Remember the 5 Drivers of a Decentralized Future I mentioned earlier? Let’s talk about the other four.

Novel Modalities and Analytics – Humans create a lot of data, and it isn’t possible to make sense of it without technologies like machine learning and artificial intelligence to connect the dots, see new patterns, and measure outcomes. Simultaneously, there is innovation around new form factors and hardware that makes experiencing such information more interesting.
New Entrants – This is all about the fusion between what we love most in the digital health space mixed up with what we love most about other consumer experiences such as retail and branding. Consumers are starting to recognize their healthcare not separate from other parts of their life, but as a more seamless experience thanks to new entrants into the space.
New Business Models – Take Omada Health who recently partnered with University of Nebraska Medical Center and Wake Forest University to launch the largest clinical trial of Digital Diabetes Prevention tool ever. This is one such example of a partnership between a platforms layering into services in order to become new care delivery models.
New Environments – Health Happens Everywhere. But does our health care? No, but it will. Which is perhaps the greatest motivation to push an open data agenda.

The barriers to interoperability are great. Far more numerous in fact than what we have time to cover here, but it starts with a common agreement and belief that data should be free, it should be open, and it should move freely. The barriers will continue to be great, too great in fact, unless we take a moment as Mark Ganz suggests to remind ourselves why we’re in it and who we’re in it for: each other.

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Innovate or Bust: the Case for an Open Future