There is a growing, concerning gap between patient expectations and actual experience, according to panelists at the ONC National Meeting on Thursday.
“Many of us still have issues getting or accessing our health information, and if you are like me, it seems to be a never-ending saga,” said Lana Moriarty, director of consumer health at ONC.
She kicked off the morning session, where representatives from the Office of the National Coordinator for Health Information Technology, Get My Health Data, Flip the Clinic, and the Department of Veterans Affairs Center for Innovation (VACI) touched on consumers’ experiences with health care.
The average patient has several interactions with the health care system in a given year, meaning multiple patient portals and a continuous burden on the consumer to gain their health care information where and when it is needed.
Christine Bechtel, coordinator of Get My Health Data, described the issues most patients have with securing their patient records, despite their expectation that personal medical data should be easy to obtain. She noted four themes:
- Culture: Sending the message to patients that data is for doctors, not a health empowerment tool.
- Format: Sending health records only in inconvenient formats, such as CD-ROMs.
- Fees: Despite the Department of Health and Human Services Office of Civil Rights laws prohibiting health providers from charging for records, there is often a fee-per-page system.
- Usability: Information is too complex; images are not accompanied by an explanation; etc.
“We have a gap,” Bechtel said, “and the major gap is between policy and practice…and rights have not translated all the way into the field.”
The panel then addressed the start-to-finish experience of attending medical appointments. Most agreed that their last time in a doctor’s office was not a “flawless and awesome” occurrence.
Whitney Bowman-Zatzkin, project director of Flip the Clinic, pointed to a few elements that could help providers meet patient expectations in their offices:
- People-centered: Think of patients first and remember that we are all working together.
- Expansive: Make decisions based on the well-being of the entire community.
- Joyful: Every patient leaves feeling safe, protected, and loved.
- Nourishing: All patients have their needs met, from the waiting room to the nurse’s station to theelectronic health records portal.
- Transparency: Patients feel valued and do not feel like they carry any burden with obtaining health records.
Bowman-Zatzkin then described the successful implementation of a few of these elements within a Pennsylvania practice. Upon checking out of their appointment, patients were asked if they would like a copy of the medical notes and lab results–100 percent said yes.
And, she said, “what is greater than this moment of sharing the records back and forth is [the doctor] found an opportunity to engage with the families to find what they needed…what technology would help you, how can I better serve your family.”
The panel wrapped up with a look at how the Department of Veterans Affairs, the nation’s largest integrated health care system, is working to transform via human-centered design. Most veterans reported having an extremely difficult time navigating the VA system, and the department began to retrain employees and rework the portal to better meet veterans’ needs.
Andrea Ippolito, innovators network lead at the VACI, described how as time went on, leadership realized they needed employee engagement to make the transformation stick.
“Innovation often feels like a fight at the VA,” she said, “but we need to provide a better experience so [employees] can help needs and empower the process.”
Launching the VA Innovators Network allowed employees to co-design with the veterans and feel fully invested–empowering employees to see and solve problems on the ground.
