In the United States, patient-centric care is a hot topic among healthcare leaders. However, in 49 out of 50 states, patients do not have ownership of their information in the EHR. Jim St. Clair, Chief Trust Officer at Lumedic, contended why patient-centric interoperability is integral for providers to pursue.
As data governance regulations like GDPR, HIPAA, and the 21st Century Cures Act affect health systems, patient data access is a resurgent topic of conversation. Additionally, wearable technology continues to collect even more patient information. Lumedic, a patient-centric data exchange platform, is working to enable technology, standards, and architecture to manage patient information better and improve the caregiving experience.
The process of moving to patient-driven interoperability does come with some challenges.
According to St. Clair, understanding patient identities has become a challenge. One factor has been as a result of remote care. Whereas most people would be willing to reveal details to providers, they may, for example, be unwilling to provide sensitive information during a telehealth appointment where their family could hear.
This challenge only exacerbates the existing hurdle of sharing electronic records in traditional encounters. Identify is an aspect factoring into the care coordination and caregiving of patients.
"These are people that are not designed to be nor set out their career to be data entry clerks. And then add to that challenge is around the data entry platform that they may have. There is room for error; there's room for requirements, for correction. There's room for having to determine if authorization in sharing information is good or bad as part of the engagement," St. Clair explained.
First, healthcare systems must look to process flow to enable patient-centric interoperability in their communities.
St. Clair recommended a framework or approach to the 21st Century Cures Act compliance and SHOH populations included. The next step would be to decide how to incorporate standards. Finally, a software solution is necessary.
"It has to be built on a framework of standards and mature technologies that at the end of the day, we'll meet security compliance needs that will meet legal and regulatory requirements," he said.
Some industry professionals are concerned about consumer questions regarding their medical records, according to Russell. If patients inquire or attempt to correct their medical information, providers are worried their office, front desk, and HIM Department will experience increased traffic.
According to St. Clair, this is one way the adoption of patient-centric interoperability has slowed down.
"I also think it's heading that way inevitably, which is to really begin to examine how much a person is in charge of their health information now and how many tools like what we have or what Apple has given the ability to be in charge of their information going forward," he explained.
Patients can now watch physicians put information into the record under the 21st Century Cures Act. Now, patients could demand providers correct or even remove information from their records. This presents problems for physicians, as they must balance liability and consumers' legal rights to correct information.
"As an information society, we are more and more being enabled and empowered with information at our device or laptop. And how we handle that is going to become an individual responsibility. That individual responsibility has probably been something that's been abstracted out from a lot of our healthcare practices for social-cultural reasons. As well as for business and process reasons," he said.
Some healthcare professionals argue that they must create a comprehensive patient record. This would allow for a system to collect comprehensive patient information like social determinants. However, there are certain combinations of information that consumers may not feel comfortable sharing with every party.
"Enabling that ability for you to be selective and sharing that information or enabling a family member to share that information is kind of paramount to your holistic care plan," he explained.
Patient-centric interoperability gives consumers a choice to be in charge of their data and share it, St. Clair posited.
"Someone across the street, someone they trust within a social media circle. Someone that to them represents a trusted element for part of their data exchange and how they facilitate their care," he explained.
In the Lumedic platform, there are cryptographic trust mechanisms, according to St. Clair. This grants providers a verifiable way to share auditable and trusted information with care circles.
"There needs to be a way that that person can be trusted both in terms of who is receiving the information and how the information is being shared," he said.
As people relocate post-pandemic, the market demand for patient-centric interoperability will rise, St. Clair explained. He attributed this partially to relocation bringing consumer attention to restrictions around information exchanges. This will lead to consumers wanting the ability to access it anywhere.
"I think that's going to result in some market demand for information we haven't had before. And, hopefully, work out what some of those problems might be," St. Clair said.