In a new report released this week, researchers with the Sequoia Project showed how meaningful improvements in health information access for patients, caregivers and care partners are critical to boosting interoperability. 

WHY IT MATTERS

During months of direct research, the Sequoia Project's Consumer Voices Workgroup facilitated discussions and polls focused on patient and provider experiences using electronic health record-based patient portals as the vehicle for accessing, using and sharing health records.

Not only are patients often unable to easily access their own health records, the researchers found, they're not able to understand the medical records they have access to. Moreover, sharing their own data without making use of telephone calls, paper forms, fax machines and "sometimes even going in-person to their providers’ offices" is also difficult.

"The consequences of the administrative burden placed on patients, caregivers and care partners can be stressful, painful and life-threatening," said Dr. Grace Cordovano, founder of Enlightening Results and workgroup co-chair.

The findings and recommendations from Sequoia's Consumer Voices Workgroup could help patient portal developers to better understand how users encounter challenges in accessing, using and sharing their health information, patient advocates say. 

"It isn’t surprising that people expect a similar and reasonable amount of digital ease from their healthcare providers as experienced with other consumer services," said Shannah Koss, consumer advocate, president of Koss on Care and co-chair of the workgroup.

"Unfortunately, the more providers a person sees, the more scattered their health information is," she added.

The Sequoia Project workgroup included patients and caregivers from all regions of the United States in rural, urban and suburban locations, and convened with facilitators virtually on a monthly basis between December 2022 and April 2023. 

Participants were 63% female and 37% male, with 25% self-identifying as LGBTQ. Sequoia Project said that all use smart devices or computers to access medical records, but 80% of the people they care for do not. 

While 57% of initiative participants reported trying to get medical records was stressful, time-consuming or confusing, and 43% of the group said they had to go in person to pick up medical records, the study revealed that information gaps also caused several concerning consequences on patient care due to health information silos:

• 43% experienced a hospital emergency where providers had no record of medications and allergies.
• 43% experienced duplicating tests/images because they weren’t shared between providers.
• 29% had to cancel appointments because medical records weren’t available.
• 43% had hesitancy to switch doctors for fear of losing their medical history.

The patients and caregivers participating in the workgroup also met roadblocks in accessing historic medical records. 

But it's not just the patient portals that need improvement, the workgroup says. 

"People want plain language results and reports so they can be more engaged in managing their Health," Sequoia Project said in a statement. 

"Until reports are written for consumption by patients, the full benefits of patient access to their health records will not be achieved." 

Sharing is another key area that must be clarified for consumers accessing health data through EHR portals, the workgroup said. 

They "view the patient portal as the mechanism that could allow them to self-direct specific health records to specific recipients, for specific time periods." 

The report also noted that patients and caregivers are unaware of health information exchanges and whether their providers participate in them. And if so, they do not know which hospitals, urgent care centers, pharmacies or other providers have access to their health records. 

They also don't know if they need to opt in or out of HIEs, the workgroup said, or anything about their rights to access their own health records, how and with whom their information is exchanged and the federal entities that provide industry guidance and oversight.

Phase two of the initiative – Sequoia Project’s Consumer Engagement Strategy Workgroup, which is recruiting participants now – is expected to develop short- and long-term cross-industry strategies to meet consumer needs for patient engagement and health data access that could help IT developers innovate their patient portal designs. 

THE LARGER TREND

As part of the Sequoia Project – which serves as the Recognized Coordinating Entity for the Office of the National Coordinator for Health IT’s Trusted Exchange Framework and Common Agreement – the Consumer Voices Workgroup recommendations are intended to have an influence on how EHR vendors improve tethered patient portals.

When EHRs first began automatically populating accessible patient health records via tethered portals, patients began making good use of the portals. 

Out of the gate, some organizations thought carefully about how they would populate portal information, and in some instances delayed posting laboratory results, diagnostic imaging and pathology reports to portals. This would allow care teams time to interpret results, talk with patients about them and answer questions.

In 2010, the University of Texas MD Anderson Cancer Center told Healthcare IT News that such results were then available for patient view seven days after they were finalized to allow for dialogue.

"It's important to allow our specialized healthcare teams the time they need to walk a patient through new test results," said Dr. Larry Driver, an anesthesiologist in MD Anderson's pain medicine department and a clinical ethicist. 

"It could be very disconcerting for a patient to see that one of their markers has spiked or a radiology report that notes a questionable shadow without proper interpretation or context from their physician. What's great is that once a patient and their team have had the conversation, the patient can go back, read the reports, and that can reinforce the visit," he said back then.

Today, most patient portals provide radiology reports in their raw form. There is no mechanism to stop a patient from checking their pathology or imaging results on a Friday afternoon and experiencing anxiety or stress through the weekend as they struggle on their own to understand a new world of health terminology.

The Consumer Voices Workgroup recommends that preference should be available at the test level – patient portals should allow for individuals to choose when test results are posted – as soon as they are available, or after a doctor has reviewed them. 

ON THE RECORD

"That a diverse group of people had similar experiences tells us the barriers we must overcome are not isolated to a certain region of the country, particular health systems, or specific patient portals," said Mariann Yeager, CEO of The Sequoia Project. "The barriers are pervasive and national in scope."

Andrea Fox is senior editor of Healthcare IT News.
Email: afox@himss.org
Healthcare IT News is a HIMSS Media publication.