The Sequoia Project releases best practices for patient data access

The Sequoia Project released a draft document outlining best practices to improve patient data access, with an emphasis on supporting providers in implementing patient-centered strategies. 

The best practices and accompanying implementation toolkit were developed by the Interoperability Matters' Consumer Engagement Strategy Workgroup, which is made up of patient data advocates along with representatives from EHR companies, personal health record developers and healthcare providers. 

"We have policies that grant patients a definitive right to access their data in a timely manner without undue burden. At both the federal and state levels, the intent of the laws and regulations to support patients and caregivers is clear," the workgroup wrote. "Yet, the realization of this intent is far from the reality many patients experience." 

The draft publication suggests that the persistent patient data access problems across the U.S. healthcare system do not require advanced engineering or large investments. Rather, the industry needs a "new perspective on how we communicate about and facilitate access to data." 

Providers must consider patients' health data needs from the patient's perspective, the workgroup suggested, with an emphasis on creating simple, accessible mechanisms for patients to access their data. 

For example, the workgroup recommended consolidating all data-related information into a "patient data resource center." This center would contain information about data privacy policies, health information exchange, portal access and patient consent, all in a central location. 

The workgroup also recommended providing patients with written guidance on how to access their data in both web and paper formats. With this information readily available, providers can easily educate patients on their right to information, types of electronic health information, fees, format options and timing for information retrieval. 

In terms of design, the workgroup recommended that providers utilize established user experience design methods to make their content more accessible, reduce friction and enable patients to easily find guidance on how to interact with their health data. 

Staff training on these processes and systematic reviews of the patient data access content were also identified as key best practices for ensuring accuracy and ease. 

In addition to identifying best practices, the workgroup created an implementation toolkit to help providers put these strategies into practice. 

The Sequoia Project is seeking feedback on the draft through April 2, 2026. 

"Ensuring that health data truly serves the consumer requires more than technology. It requires listening to people and acting on what we hear," Mariann Yeager, CEO of The Sequoia Project, said in a press release. 

"The Consumer Engagement Strategy Workgroup brings together diverse voices to turn real-world consumer insights into practical strategies that reduce barriers and help health data work better for everyone." 

Jill Hughes has covered healthcare cybersecurity and privacy news since 2021.