Patients not happy with health data access

Even after more than a decade of building interoperability across the care continuum, healthcare consumers remain frustrated with lack of seamless, timely access to their own personal health data, according to a new report from The Sequoia Project. 

In 2022, The Sequoia Project convened a group of diverse healthcare consumers, many of whom are caregivers for elderly family members and/or children in addition to being patients themselves.  

The interoperability organization found that consumers were not always able to get the information they needed to make decisions about their care or the care of their dependents, despite being active technology users in their daily lives. 

Persistent challenges with accessing personal health information

Over half of consumers said trying to access medical records was stressful and time consuming, while more than 40% said they are hesitant to switch providers for fear of losing access to records and data for themselves or the people they care for. 

Similar numbers reported repeated testing or cancelled appointments due to lack of access to test results, as well as the need to pick up medical records in person, which takes time away from self-care or the care of others. 

“The consequences of the administrative burden placed on patients, caregivers, and care partners can be stressful, painful, and life-threatening,” says Dr. Grace Cordovano, BCPA, founder of Enlightening Results, and co-chair of the Consumer Voices Workgroup. “It’s unconscionable that the barriers people face are preventable with existing technology; it doesn’t have to be this hard.”  

Workgroup members experienced a variety of challenges when trying to gain access to their records, including the fact that not all providers have online portals with the ability to view or download information. Even when portals are available, half of participants said they aren’t user friendly and 63% reported problems with getting historical records. Consumers often reported playing “telephone tag” with office staff to try resolving medical record concerns. 

Consumers also reported that they weren’t aware of efforts to improve the situation. None of the participants knew about federal regulations to prevent information blocking or how to file a report on suspected information blocking. 

Just one workgroup member knew about health information exchanges (HIEs) in general, but none of the members knew if their specific healthcare providers participated in an HIE at the local, state, or national level. 

Changing the health data access landscape for the better

 Workgroup members had plenty of ideas about what they want health data access to look like – and how to get to that ideal state. 

In general, participants are looking for seamless access to all of their health information, including data that is older than the six-year retention threshold required by HIPAA for many record types. Fragmentation across providers and missing or hard-to-find data were some of the biggest challenges reported by the workgroup. 

Patient portals need to be much easier to navigate and designed around the needs of the user, not the perspective of providers or the limitations of electronic health record systems, consumers said. The lag between sending an electronic message and getting an answer, which is often takes more than two business days, must also be addressed. 

Specifically, panel members suggested the following improvements to health data management technologies and processes: 

• Provide tutorial videos or user guides when registering for a patient portal to educate users about how to access key features and functions 

• Adopt CRM and help desk principles, like auto call-back options when the call queue is too long or a ticketing system that can only be closed when the patient agrees their issue has been resolved 
• Implement a flagging feature that allows a patient to identify an error in their records and correct the problem within the portal 
• Develop a comprehensive list of all providers who have access to a patient record and allow users to manage privacy and access rights electronically in a unified location 
• Allow patients to choose whether they want to see all unfiltered or unreviewed test results immediately or only see a provider’s report when available 
• Include plain language summaries of reports or patient-friendly educational materials on medical conditions to avoid confusion medical jargon or undue alarm over results 

• Create a “generate referral info” or “share with new provider” button that automatically aggregates the most common information required for a referral or specialty consult without additional effort from the patient 

The report findings will form the foundation for The Sequoia Project’s upcoming Consumer Engagement Strategy Workgroup, which will work to develop immediate and long-term strategies for addressing these and other health data access concerns. 

“We’re incredibly appreciative of our consumer workgroup members who shared their personal stories with us,” said Mariann Yeager, CEO of The Sequoia Project. “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. The barriers are pervasive and national in scope.” 

“We heard from our consumers. Now it’s time to act on what they said. We are eager to convene subject matter experts who can implement meaningful changes to improve health information access for patients, caregivers, and care partners.” 

 Jennifer Bresnick is a journalist and freelance content creator with a decade of experience in the health IT industry.  Her work has focused on leveraging innovative technology tools to create value, improve health equity, and achieve the promises of the learning health system.  She can be reached at jennifer@inklesscreative.com.