Healthcare data is increasing at an exponential rate. Approximately one-third of the world’s data volume is being generated by the healthcare industry. By 2025, the compound annual growth rate of healthcare data will reach 36% – that’s 6% faster than manufacturing, 10% faster than financial services, and 11% faster than media and entertainment.
In addition to information captured during visits with healthcare professionals, personal health information is being created by an increasingly diverse set of devices, apps, and monitoring technologies, each generating a dizzying array of daily statistics on health and wellness. This raw data is being used to generate AI-based insights often stored and managed in vast, cloud-based information networks. Further, this medical information will continue to grow while becoming increasingly disconnected.
To achieve the promise of the healthcare information age, it’s critical for the industry to connect these increasingly disparate and disconnected data sources. While there is an immediate need for Electronic Health Record (EHR) interoperability, ultimately it is about more than just interoperability between healthcare systems. It is about getting a 360-degree view of a person’s health – information that sits in multiple EHRs as well as personal health data generated through wearable devices, apps, and tests outside of the general healthcare environment.
For clinicians, bringing together disparate sources of patient data provides them with the full picture so they can better understand overall patient health and wellness, make more informed health decisions, and support better health outcomes. This is crucial, especially as medical errors account for more than 250,000 deaths annually in the U.S. – significantly more than other developed nations.
For healthcare consumers, it provides a holistic and comprehensive medical history that is not specific to any healthcare organization or technology and that follows them wherever they go – at a hospital while on vacation, across town to a new provider, or at various specialists. It also has the potential to facilitate better personal health decisions and wellness planning to prevent acute problems later, improve clinical outcomes now, and reduce the need for redundant diagnostic testing.
To connect the dots, we need to start by untangling the Gordian knot that is healthcare data.
Thread 1: Electronic Health Records
At the root of the healthcare information data challenge is the EHR. This vital healthcare information is often housed in a wide variety of disparate and disconnected Electronic Medical Records (EMR) systems. Each healthcare organization (HCO) may have one or many different EMRs, so a patient’s medical history may be fragmented across various EMR systems within a single HCO and then further dispersed across multiple HCOs.
For example, a patient may have seen their primary care physician for an annual check-up, as well as been treated for a serious condition in a hospital belonging to that same HCO. If there are different EMRs for primary care offices and the hospital, that individual now has two different and disconnected records in that one HCO. Now, consider that same patient goes skiing on vacation, falls, and needs emergency orthopedic surgery. The local hospital uses its own instance of an EMR that is, again, different and disparate from the patient’s home HCO. As a result, the patient now has a third identity.
This pattern continues over time often resulting in many, completely disconnected datasets that describe a patient’s medical history. There are now many different ‘versions’ of the same person with no ability to automatically connect those records for a complete view of the patient. The burden rests on the patient to manually gather information from system to system, collate it, and then communicate it accurately to each healthcare provider.
Some EMR technologies have tried to address this challenge by allowing for records to be shared across different instances of their own technology – a fix that is difficult to implement and still limited in scope and scale. Further, many technologies now support a manual export of medical information that the patient, caregiver, or HCO can piece together from multiple files. Additionally, Healthcare Information Exchanges (HIEs) are designed to aggregate this information from multiple sources and can sometimes offer a more holistic picture of a patient, but there aren’t many HIEs available and they are not nationwide so even an HIE cannot provide a complete source of truth of a patient.
In most cases, reconciling different medical personas created over a lifetime of interactions is still complex, manual, paper-based, and falls on the patient to manage. Yet, the impact of fragmented patient medical information goes well beyond simple inconvenience. It can also impact clinicians’ ability to provide the right treatment plans to achieve the best health outcomes.
“If you are a complicated patient, there is a higher risk of a doctor not having all of the data – and it should be the opposite,” said Dr. Doug McKee, chief medical information officer at Health First. “Patients don’t always know their medicines and current dosages or what the results were from recent tests. Adding to this, a patient’s information is often scattered across multiple systems so the treating physician may not have this information either. You can’t expect patients to recall these details and it takes time for clinicians to gather it.”
Dr. McKee continued, “Just being able to share information is the first step. The next step is to make sure the data is accurate, curated, maintained, and up to date but that often doesn’t happen. So, it’s garbage in, garbage out – and the disconnect creates a mess.”
In addition to impacting patients’ healthcare, the challenge of disparate systems and fragmented healthcare information also makes it difficult to combine healthcare system-driven medical history with personally curated wellness information. At a time when the volume and complexity of personal health and wellness data is experiencing exponential growth, it is becoming increasingly critical to combine both healthcare and personal wellness information to get a more complete picture of the individual.
Thread 2: Personal Health & Wellness Data
The rise of personal wellness tracking applications and devices — as well as medical-grade, consumer diagnostics tools — has forever changed the scope of healthcare information. Unlike the medical information resulting from provider interactions, this information is not captured in an EMR. Further, these data streams are often continuous – rather than episodic – showing trends over time versus a single point-in-time view. Wearable devices, such as Fitbits and Apple Watches, have become almost ubiquitous, capturing a continuous stream of information, such as heart rate, body temperature, sleeping patterns, and more.
Additionally, more specialized devices are now available to consumers to capture critical information outside the context of a physician’s office. For example, a patient may experience what could be a heart arrhythmia, but it is intermittent and does not occur during visits to their cardiologist’s office. Simple-to-use and portable consumer EKG devices that are FDA-cleared allow patients to capture this information at home and as symptoms occur, providing another window into the patient’s health that goes beyond the four walls of the traditional healthcare provider.
With each year, these personal devices improve in both accuracy and data capture and provide another critical tool to clinicians when diagnosing and treating patients. This persistent, longitudinal data captured in real time adds rich insight into patients’ health histories that can assist healthcare professionals in bolstering both health and wellness.
“Patients and doctors need a single source of truth across providers, towns, and devices,” explained Dr. McKee. “Currently, however, if the patient goes into an urgent care, then meets with his primary care provider followed by a specialist who recommends the use of a wearable device – these are all different sources of truth, which means there is no real source of truth. That is the challenge.”
While the body of personal health and wellness information continues to increase at an astounding rate, there is still no standard and operationalized way of capturing and digesting data from these types of digital devices. And, while this information is important, it is another set of data points that individual patients need to manually collate. Combining the insights from outside the bricks-and-mortar provider setting with traditional medical information is crucial to creating a 360-degree view of the individual. Without seamless integration, the sources, volume, and complexity of health information will continue to grow, and the problems will compound.
Thread 3: Complex Care and the Rise of Advanced Testing
Up until now, each twist of this Gordian knot represented more common patients – those who are relatively healthy with occasional injuries or illnesses. However, there are millions of people who suffer from chronic disease, rare disease, cancer, and multiple diseases simultaneously. These complicated patients add another level of complexity to the data interoperability challenges as they often see multiple specialists or need to go to various hospitals to get treatment. It becomes a tangled web of data points.
Further complicating the healthcare data picture is the rise of genetic and other testing to better understand complex conditions. Today, when a patient is diagnosed with a serious disease, there are often diagnostic tests ordered to better understand the nature of the condition and the best pathways to care. In many cases, the results of these advanced diagnostics are delivered as unstructured information (i.e., a paper document, PDF, etc.). As such, critical data elements are often lost in paper results documents or attachments in the EMR where both patients and clinicians must manually cross-reference that information with other healthcare data. The impact of this manual collation of data can be seen in everything from clinical decision-making to the identification of potential clinical trial participation.
“It’s not realistic to expect patients – especially patients with complicated medical conditions – to have all information around medications and dosages as well as advanced diagnostic test results at their fingertips. On the other hand, it’s risky for doctors to rely on medical records alone,” Dr. McKee added. “A cancer patient, for instance, may have to carry her medical records and medications around in bags from hospital to doctor’s office to the clinic to a pharmacy. It adds so much unnecessary burden and stress on an already very sick patient.”
Additionally, some genetic profiling has moved outside the walls of the HCO and into the hands of the healthcare consumer. Direct-to-consumer testing through third parties, such as 23andMe, Ancestry, or emerging consumer lab testing companies like Everlywell, has spiked in the last five years as home kits have become easier to use, more available, and less expensive. In fact, the global direct-to-consumer genetic testing market is expected to grow at a compound annual growth rate of 22.84% between the years 2017 and 2028.
With both clinician-prescribed and healthcare consumer-driven testing on the rise, there is an opportunity to harness this information to drive better decision-making on both the part of the patient and the clinician. However, until this data is unified with the rest of an individual’s health information and readily accessible to those who need it, the utility of this testing data will remain limited.
A Brave New World of Interoperable Healthcare
“But everyone belongs to everyone else.” – Aldous Huxley, Brave New World
In contrast to Aldous Huxley’s futuristic “World State,” where the things that make each individual unique have been removed, the real world is composed of billions of biologically complex human beings, each similar in some ways, but different in many others. We are at an inflection point where modern science and modern technology have intersected to create the perfect storm of data dysphoria – a twisted knot of medical data threads.
But imagine what could be achieved if we could bring all this medical information together to create a single, streamlined, and accurate medical view? And in a way where additional data sources in the future could be easily sewn into that same patient’s medical tapestry?
Achieving this personalized new world becomes more imperative with each passing day, too. Healthcare data is exploding, as well as the diversity of data sources. And, as that data continues to grow, so do the opportunities to dramatically improve care, increase health equity and access, and reduce the burden on clinicians and patients. In this world, clinicians would have easy access to comprehensive data on individual patients, and patients would receive better care with less stress and frustration.
Ultimately, this care model would yield a medical system less burdened by cost and more empowered to provide quality treatment to every man, woman, and child across every demographic.
About Jennifer Goldsmith
Jennifer Goldsmith is the President of Tendo Systems, a software company driving digital transformation in healthcare by creating exceptional experiences for patients, clinicians, and caregivers. With deep experience in software-as-a-service platforms and applications, as well as professional and strategic services, Goldsmith has spent more than two decades defining and building new markets, incubating early solutions, building high-performing teams, and scaling regulated businesses across the education and life sciences industries. In addition to her role at Tendo, Goldsmith serves on the board of directors at Benchling and BTR and has published extensively on technology and business topics. Past companies include Computer Sciences Corporation, IBM, Instructure, and Veeva, where Goldsmith was responsible for leading Veeva Vault from its formation to market leadership. She can be reached at email@example.com.