Healthcare knowledge is rising at an exponential price. Roughly one-third of the world’s knowledge quantity is being generated by the healthcare trade. By 2025, the compound annual development price of healthcare knowledge will attain 36% – that’s 6% sooner than manufacturing, 10% sooner than monetary companies, and 11% sooner than media and leisure.
Along with data captured throughout visits with healthcare professionals, private well being data is being created by an more and more numerous set of units, apps, and monitoring applied sciences, every producing a dizzying array of every day statistics on well being and wellness. This uncooked knowledge is getting used to generate AI-based insights typically saved and managed in huge, cloud-based data networks. Additional, this medical data will proceed to develop whereas changing into more and more disconnected.
To realize the promise of the healthcare data age, it’s crucial for the trade to attach these more and more disparate and disconnected knowledge sources. Whereas there may be a direct want for Digital Well being File (EHR) interoperability, finally it’s about extra than simply interoperability between healthcare methods. It’s about getting a 360-degree view of an individual’s well being – data that sits in a number of EHRs in addition to private well being knowledge generated via wearable units, apps, and assessments exterior of the overall healthcare atmosphere.
For clinicians, bringing collectively disparate sources of affected person knowledge offers them with the total image to allow them to higher perceive general affected person well being and wellness, make extra knowledgeable well being choices, and assist higher well being outcomes. That is essential, particularly as medical errors account for greater than 250,000 deaths yearly within the U.S. – considerably greater than different developed nations.
For healthcare shoppers, it offers a holistic and complete medical historical past that’s not particular to any healthcare group or expertise and that follows them wherever they go – at a hospital whereas on trip, throughout city to a brand new supplier, or at varied specialists. It additionally has the potential to facilitate higher private well being choices and wellness planning to stop acute issues later, enhance scientific outcomes now, and scale back the necessity for redundant diagnostic testing.
To attach the dots, we have to begin by untangling the Gordian knot that’s healthcare knowledge.
Thread 1: Digital Well being Data
On the root of the healthcare data knowledge problem is the EHR. This important healthcare data is usually housed in all kinds of disparate and disconnected Digital Medical Data (EMR) methods. Every healthcare group (HCO) might have one or many various EMRs, so a affected person’s medical historical past could also be fragmented throughout varied EMR methods inside a single HCO after which additional dispersed throughout a number of HCOs.
For instance, a affected person might have seen their major care doctor for an annual check-up, in addition to been handled for a severe situation in a hospital belonging to that very same HCO. If there are completely different EMRs for major care workplaces and the hospital, that particular person now has two completely different and disconnected data in that one HCO. Now, contemplate that very same affected person goes snowboarding on trip, falls, and desires emergency orthopedic surgical procedure. The native hospital makes use of its personal occasion of an EMR that’s, once more, completely different and disparate from the affected person’s dwelling HCO. Because of this, the affected person now has a 3rd identification.
This sample continues over time typically leading to many, fully disconnected datasets that describe a affected person’s medical historical past. There are actually many various ‘variations’ of the identical individual with no means to robotically join these data for an entire view of the affected person. The burden rests on the affected person to manually collect data from system to system, collate it, after which talk it precisely to every healthcare supplier.
Some EMR applied sciences have tried to deal with this problem by permitting for data to be shared throughout completely different cases of their very own expertise – a repair that’s tough to implement and nonetheless restricted in scope and scale. Additional, many applied sciences now assist a guide export of medical data that the affected person, caregiver, or HCO can piece collectively from a number of information. Moreover, Healthcare Data Exchanges (HIEs) are designed to combination this data from a number of sources and may typically supply a extra holistic image of a affected person, however there aren’t many HIEs accessible and they don’t seem to be nationwide so even an HIE can’t present a whole supply of fact of a affected person.
Normally, reconciling completely different medical personas created over a lifetime of interactions continues to be advanced, guide, paper-based, and falls on the affected person to handle. But, the affect of fragmented affected person medical data goes properly past easy inconvenience. It might additionally affect clinicians’ means to offer the appropriate therapy plans to realize the most effective well being outcomes.
“In case you are an advanced affected person, there’s a larger danger of a health care provider not having the entire knowledge – and it needs to be the other,” mentioned Dr. Doug McKee, chief medical data officer at Well being First. “Sufferers don’t all the time know their medicines and present dosages or what the outcomes had been from current assessments. Including to this, a affected person’s data is usually scattered throughout a number of methods so the treating doctor might not have this data both. You may’t count on sufferers to recall these particulars and it takes time for clinicians to collect it.”
Dr. McKee continued, “Simply with the ability to share data is step one. The following step is to ensure the info is correct, curated, maintained, and updated however that always doesn’t occur. So, it’s rubbish in, rubbish out – and the disconnect creates a multitude.”
Along with impacting sufferers’ healthcare, the problem of disparate methods and fragmented healthcare data additionally makes it tough to mix healthcare system-driven medical historical past with personally curated wellness data. At a time when the quantity and complexity of non-public well being and wellness knowledge is experiencing exponential development, it’s changing into more and more crucial to mix each healthcare and private wellness data to get a extra full image of the person.
Thread 2: Private Well being & Wellness Information
The rise of non-public wellness monitoring purposes and units — in addition to medical-grade, shopper diagnostics instruments — has perpetually modified the scope of healthcare data. Not like the medical data ensuing from supplier interactions, this data isn’t captured in an EMR. Additional, these knowledge streams are sometimes steady – moderately than episodic – exhibiting developments over time versus a single point-in-time view. Wearable units, akin to Fitbits and Apple Watches, have change into nearly ubiquitous, capturing a steady stream of knowledge, akin to coronary heart price, physique temperature, sleeping patterns, and extra.
Moreover, extra specialised units are actually accessible to shoppers to seize crucial data exterior the context of a doctor’s workplace. For instance, a affected person might expertise what could possibly be a coronary heart arrhythmia, however it’s intermittent and doesn’t happen throughout visits to their heart specialist’s workplace. Easy-to-use and transportable shopper EKG units which can be FDA-cleared permit sufferers to seize this data at dwelling and as signs happen, offering one other window into the affected person’s well being that goes past the 4 partitions of the normal healthcare supplier.
With every year, these private units enhance in each accuracy and knowledge seize and supply one other crucial software to clinicians when diagnosing and treating sufferers. This persistent, longitudinal knowledge captured in actual time provides wealthy perception into sufferers’ well being histories that may help healthcare professionals in bolstering each well being and wellness.
“Sufferers and docs want a single supply of fact throughout suppliers, cities, and units,” defined Dr. McKee. “At the moment, nonetheless, if the affected person goes into an pressing care, then meets along with his major care supplier adopted by a specialist who recommends the usage of a wearable system – these are all completely different sources of fact, which suggests there isn’t any actual supply of fact. That’s the problem.”
Whereas the physique of non-public well being and wellness data continues to extend at an astounding price, there may be nonetheless no commonplace and operationalized method of capturing and digesting knowledge from these kinds of digital units. And, whereas this data is vital, it’s one other set of knowledge factors that particular person sufferers must manually collate. Combining the insights from exterior the bricks-and-mortar supplier setting with conventional medical data is essential to making a 360-degree view of the person. With out seamless integration, the sources, quantity, and complexity of well being data will proceed to develop, and the issues will compound.
Thread 3: Advanced Care and the Rise of Superior Testing
Up till now, every twist of this Gordian knot represented extra frequent sufferers – those that are comparatively wholesome with occasional accidents or diseases. Nevertheless, there are tens of millions of people that undergo from continual illness, uncommon illness, most cancers, and a number of ailments concurrently. These sophisticated sufferers add one other degree of complexity to the info interoperability challenges as they typically see a number of specialists or must go to varied hospitals to get therapy. It turns into a tangled internet of knowledge factors.
Additional complicating the healthcare knowledge image is the rise of genetic and different testing to higher perceive advanced situations. In the present day, when a affected person is identified with a severe illness, there are sometimes diagnostic assessments ordered to higher perceive the character of the situation and the most effective pathways to care. In lots of circumstances, the outcomes of those superior diagnostics are delivered as unstructured data (i.e., a paper doc, PDF, and so forth.). As such, crucial knowledge components are sometimes misplaced in paper outcomes paperwork or attachments within the EMR the place each sufferers and clinicians should manually cross-reference that data with different healthcare knowledge. The affect of this guide collation of knowledge might be seen in every thing from scientific decision-making to the identification of potential scientific trial participation.
“It’s not sensible to count on sufferers – particularly sufferers with sophisticated medical situations – to have all data round drugs and dosages in addition to superior diagnostic take a look at outcomes at their fingertips. Alternatively, it’s dangerous for docs to depend on medical data alone,” Dr. McKee added. “A most cancers affected person, as an illustration, might have to hold her medical data and drugs round in baggage from hospital to physician’s workplace to the clinic to a pharmacy. It provides a lot pointless burden and stress on an already very sick affected person.”
Moreover, some genetic profiling has moved exterior the partitions of the HCO and into the palms of the healthcare shopper. Direct-to-consumer testing via third events, akin to 23andMe, Ancestry, or rising shopper lab testing corporations like Everlywell, has spiked within the final 5 years as dwelling kits have change into simpler to make use of, extra accessible, and cheaper. Actually, the worldwide direct-to-consumer genetic testing market is anticipated to develop at a compound annual development price of twenty-two.84% between the years 2017 and 2028.
With each clinician-prescribed and healthcare consumer-driven testing on the rise, there is a chance to harness this data to drive higher decision-making on each the a part of the affected person and the clinician. Nevertheless, till this knowledge is unified with the remainder of a person’s well being data and readily accessible to those that want it, the utility of this testing knowledge will stay restricted.
A Courageous New World of Interoperable Healthcare
“However everybody belongs to everybody else.” – Aldous Huxley, Courageous New World
In distinction to Aldous Huxley’s futuristic “World State,” the place the issues that make every particular person distinctive have been eliminated, the true world consists of billions of biologically advanced human beings, every comparable in some methods, however completely different in lots of others. We’re at an inflection level the place trendy science and trendy expertise have intersected to create the proper storm of knowledge dysphoria – a twisted knot of medical knowledge threads.
However think about what could possibly be achieved if we may convey all this medical data collectively to create a single, streamlined, and correct medical view? And in a method the place further knowledge sources sooner or later could possibly be simply sewn into that very same affected person’s medical tapestry?
Attaining this customized new world turns into extra crucial with every passing day, too. Healthcare knowledge is exploding, in addition to the range of knowledge sources. And, as that knowledge continues to develop, so do the alternatives to dramatically enhance care, improve well being fairness and entry, and scale back the burden on clinicians and sufferers. On this world, clinicians would have quick access to complete knowledge on particular person sufferers, and sufferers would obtain higher care with much less stress and frustration.
Finally, this care mannequin would yield a medical system much less burdened by price and extra empowered to offer high quality therapy to each man, girl, and youngster throughout each demographic.
About Jennifer Goldsmith
Jennifer Goldsmith is the President of Tendo Techniques, a software program firm driving digital transformation in healthcare by creating distinctive experiences for sufferers, clinicians, and caregivers. With deep expertise in software-as-a-service platforms and purposes, in addition to skilled and strategic companies, Goldsmith has spent greater than twenty years defining and constructing new markets, incubating early options, constructing high-performing groups, and scaling regulated companies throughout the schooling and life sciences industries. Along with her position at Tendo, Goldsmith serves on the board of administrators at Benchling and BTR and has printed extensively on expertise and enterprise subjects. Previous corporations embody Laptop Sciences Company, IBM, Instructure, and Veeva, the place Goldsmith was answerable for main Veeva Vault from its formation to market management. She might be reached at jen@tendosystems.com.