The last two decades have introduced an unprecedented level of change in the collection, management and organization of patient information across the healthcare industry. Legislation such as the HITECH Act that included Meaningful Use with provider incentives, Health Information Exchange (HIE) expansion and other technology-focused programs have driven the migration from a predominately paper-based environment to a digitally enabled one. Indeed, the amount of clinical and administrative data controlled and managed by the provider, payer and life sciences organizations has created a data ecosystem that has not previously existed.
The challenge, of course, is this plethora of patient data. Not only is there often too much data, but how that data is represented based on the environment (provider, payer or life sciences) is still substantially different. For example, the data standards used by each market as well as the way individuals are identified is distinctly different. Interestingly, the common thread across these markets, the “person,” has the least visibility to that data, not to mention control and oversight of that information.
There are a variety of reasons why the individual has little control and visibility of the data. Reasons such as “the individual wouldn’t understand the terminology or the implications associated with the data” to “sharing the information would reduce the importance of the care team,” are heard in a variety of settings. Even HIPAA provides the individual with the right to access the information but does not establish ownership. Essentially, the covered entity owns the data and therefore determines how that data is managed within the bounds of HIPAA. Regulatory requirements such as Meaningful Use have required the implementation of patient portals to provide data to patients. Payers also have implemented member portals; however, the information is specific to the organization and often limited in terms of detail.
How does that play out from the individual’s perspective? Obviously, it means multiple portals, each with a unique set of information and little to no integration between them. Primary care information is on the PCP’s portal, hospital information is on the hospital’s portal (maybe more than one, depending on visits), and claims and other payer-specific data is on the payer portal.
Given the broad use of internet-based applications, having to struggle to get information often leads to limited use, frustration and a general “shoulder shrug” with regard to the information. Further, most of these portals were not mobile enabled, meaning that the use of a smartphone app was either not available or poorly developed. As an individual, if I can’t get access to my data in an easy way, my data is spread across multiple systems and I can’t use my mobile device, why bother?
What is the common thread when engaging with the healthcare system? Some might say it is the payer, which in many cases is true; however, the common thread is you, the individual.
Let me take you on a hypothetical journey. Imagine you had full control of your health information, including the financial, clinical, social determinant and even clinical trial eligibility and enrollment, consolidated across all settings of care. You could decide who to share your information with and had the ability, with a click of a button, to share that detail with those entities/organizations of your choosing.
What if this capability was enabled from any device and any mobile application of your choosing? Finally, you had the ability to add information to that data set such as the number of steps per week, blood pressure, weight, etc., and incorporate that with the rest of the data? Would that be a game changer? Would that potentially motivate you (and others) to take more active role in your care and potentially reduce the cost of care?
There is light at the end of the tunnel. The enactment of the 21st Century Cures Act and the recent CMS Final Rule have introduced a new and innovative mechanism by which an individual can gain access to health information. While the legislation is fairly new and currently is enforced only for CMS beneficiaries (Medicare, Medicaid, etc.), it represents the first concerted effort to push responsibility and empower individuals to actively engage in their care.
The Rule calls for the creation of platforms that enable Fast Healthcare Interoperability Resources (FHIR) via API (application programmer interface) capabilities so that an individual can select the application of their choosing and gain access to claims and clinical data from all of the various organizations that hold that data. The Rule also calls for the publication of provider directories so the individual can choose a provider and a care setting that is most convenient.
Using these FHIR API platforms, the individual can share information with providers and other payers. Since the individual can select the application, these application vendors can develop innovative ways of not only displaying the information but provide resources and services — including alerts, prevention tips, advice, community collaboration and other proactive services — that could potentially bend the cost curve and improve the health of the individual.
As we continue to improve and accelerate our use and sharing of valuable data, we can make tremendous strides in the accessibility, accuracy, portability and quality of healthcare. Fortunately, as regulatory requirements certainly steer and direct change, healthcare IT service providers are making it an achievable reality.