The need to navigate the twisted waters of health system interoperability should not fall to patients. Yet, for anyone who’s suddenly become a patient, or who finds themselves becoming a loved one’s patient advocate, the responsibility of coordinating the sharing of one’s medical history across providers is par for the course.
It’s 2020 and patients still travel to appointments with copies of their medical histories because they still need to. Sure, we’ve seen progress. But, the system of sharing information in healthcare is still broken.
Improving access to data is a priority – not only because it helps providers do their jobs, but because it helps patients. It helps families. No one needs the sharing of information to be an obstacle. Information freely, yet securely, shared must not be a luxury.
Shifting the focus to patients
Yes, there is plenty of evidence to support that sharing of information through the liberation of data is achievable. Large healthcare providers that are part of an integrated health system represent such situations, particularly when they move to a single EMR. The physician can quickly access and interpret lab results, view imaging tests, and read the patient’s complete medical history on the same screen.
But many situations present barriers to such utopian circumstances. When patients must travel from one state to another, for example. Or if they need to visit a speciality practice that doesn’t have a direct link with their primary care physician. In these cases, access to necessary data is limited or non-existent. Interoperability is difficult and improbable. While a lot of work has been done to ensure interoperability between different healthcare organizations through state and regional health information exchange networks, the focus of work has prioritized the needs of institutions over those of patients.
3 ways to improve access to information
As I did in my previous blog, I’m about to suggest something pretty bold:
To increase the urgency, and frankly, the speed with which the industry addresses its interoperability issues, let’s empower patients to be stewards of their health records.Much like the influence consumerism has had on healthcare (telemedicine, anyone?), imagine the impact active patient participation may have on our progress to enhance interoperability. Presently, the HIPAA Privacy Rule states that providers should give individuals access to their health data when they request it. This, paired with the following initiatives, could see significantly improved access to information – maybe a world where patients make use of their records during visits across providers, state lines and, dare I say it, even while receiving retail services like flu shots:
- Regulatory Requirements
Regulatory incentives have motivated other large undertakings – electronic medical records being the first to come to mind. For instance, the Centers for Medicare and Medicaid Services (CMS) program tagged “Promoting Interoperability” requires providers to give patients greater access to their clinical data in the form of electronic copies such as PDF documents. What if this went a step further to give patients the right to view, download or send their data to another provider or healthcare organization? By allowing patients to use third-party apps to connect directly with their provider’s EHR so that providers may view that patient’s medical records, CMS has already started the conversation.
- Development of Open APIsMajor EHR developers have been promoting the HL7’s Fast Healthcare Interoperability Resources (FHIR) standard. This API can be used by any application developer or EHR vendor to connect and retrieve data from an EHR. Similarly, the Apple Health Records API offers developers the opportunity to develop patient-facing apps that pull records from an EHR and make them available to patients using Apple iOS devices.
- Automated Patient ConsentWhen a patient’s medical records aren’t accessible through a health information exchange or integrated health records system, they’re transmitted through other forms of electronic or paper documentation – e.g., sending emails, making phone calls or faxes. These less-than-secure, cumbersome and time-consuming bottlenecks could be overcome by using an automated consent application. This application will help clinicians receive consent to access the records electronically without the need to send faxes back and forth. The patient can select the data they want to share, thereby protecting the physicians from violating patient privacy protection laws.
Increasing patient access to clinical data not only enhances interoperability, but it also makes it easy for such data to be used in scientific surveys and for managing population health. As healthcare providers and data liberators, we must all remember to start with the end in mind.
What initiatives do you believe show promise for patients, interoperability, and the liberation of data? I’d like to hear from you! Feel free to comment, like and share this post with your colleagues.