Sufferers need well being document entry with usability, says Sequoia Venture


In a new report launched this week, researchers with the Sequoia Venture confirmed how significant enhancements in well being info entry for sufferers, caregivers and care companions are important to boosting interoperability. 


Throughout months of direct analysis, the Sequoia Venture’s Shopper Voices Workgroup facilitated discussions and polls targeted on affected person and supplier experiences utilizing digital well being record-based affected person portals because the automobile for accessing, utilizing and sharing well being information.

Not solely are sufferers typically unable to simply entry their very own well being information, the researchers discovered, they are not in a position to perceive the medical information they’ve entry to. Furthermore, sharing their very own information with out making use of phone calls, paper types, fax machines and “typically even going in-person to their suppliers’ workplaces” can also be tough.

“The implications of the executive burden positioned on sufferers, caregivers and care companions will be demanding, painful and life-threatening,” mentioned Dr. Grace Cordovano, founding father of Enlightening Outcomes and workgroup co-chair.

The findings and suggestions from Sequoia’s Shopper Voices Workgroup may assist affected person portal builders to raised perceive how customers encounter challenges in accessing, utilizing and sharing their well being info, affected person advocates say. 

“It isn’t stunning that individuals count on an analogous and cheap quantity of digital ease from their healthcare suppliers as skilled with different shopper providers,” mentioned Shannah Koss, shopper advocate, president of Koss on Care and co-chair of the workgroup.

“Sadly, the extra suppliers an individual sees, the extra scattered their well being info is,” she added.

The Sequoia Venture workgroup included sufferers and caregivers from all areas of the US in rural, city and suburban places, and convened with facilitators just about on a month-to-month foundation between December 2022 and April 2023. 

Contributors have been 63% feminine and 37% male, with 25% self-identifying as LGBTQ. Sequoia Venture mentioned that each one use good gadgets or computer systems to entry medical information, however 80% of the folks they look after don’t. 

Whereas 57% of initiative members reported making an attempt to get medical information was demanding, time-consuming or complicated, and 43% of the group mentioned they needed to go in individual to select up medical information, the research revealed that info gaps additionally precipitated a number of regarding penalties on affected person care as a consequence of well being info silos:

  • 43% skilled a hospital emergency the place suppliers had no document of medicines and allergy symptoms.
  • 43% skilled duplicating exams/photographs as a result of they weren’t shared between suppliers.
  • 29% needed to cancel appointments as a result of medical information weren’t obtainable.
  • 43% had hesitancy to change medical doctors for worry of dropping their medical historical past.

The sufferers and caregivers collaborating within the workgroup additionally met roadblocks in accessing historic medical information. 

Nevertheless it’s not simply the affected person portals that want enchancment, the workgroup says. 

“Individuals need plain language outcomes and experiences to allow them to be extra engaged in managing their Well being,” Sequoia Venture mentioned in an announcement. 

“Till experiences are written for consumption by sufferers, the total advantages of affected person entry to their well being information won’t be achieved.” 

Sharing is one other key space that should be clarified for shoppers accessing well being information via EHR portals, the workgroup mentioned. 

They “view the affected person portal because the mechanism that might enable them to self-direct particular well being information to particular recipients, for particular time durations.” 

The report additionally famous that sufferers and caregivers are unaware of well being info exchanges and whether or not their suppliers take part in them. And in that case, they have no idea which hospitals, pressing care facilities, pharmacies or different suppliers have entry to their well being information. 

In addition they do not know if they should choose in or out of HIEs, the workgroup mentioned, or something about their rights to entry their very own well being information, how and with whom their info is exchanged and the federal entities that present {industry} steering and oversight.

Section two of the initiative – Sequoia Venture’s Shopper Engagement Technique Workgroup, which is recruiting members now – is predicted to develop short- and long-term cross-industry methods to fulfill shopper wants for affected person engagement and well being information entry that might assist IT builders innovate their affected person portal designs


As a part of the Sequoia Venture – which serves because the Acknowledged Coordinating Entity for the Workplace of the Nationwide Coordinator for Well being IT’s Trusted Change Framework and Widespread Settlement – the Shopper Voices Workgroup suggestions are supposed to have an affect on how EHR distributors enhance tethered affected person portals.

When EHRs first started routinely populating accessible affected person well being information through tethered portals, sufferers started making good use of the portals

Out of the gate, some organizations thought fastidiously about how they’d populate portal info, and in some situations delayed posting laboratory outcomes, diagnostic imaging and pathology experiences to portals. This could enable care groups time to interpret outcomes, speak with sufferers about them and reply questions.

In 2010, the College of Texas MD Anderson Most cancers Middle instructed Healthcare IT Information that such outcomes have been then obtainable for affected person view seven days after they have been finalized to permit for dialogue.

“It is necessary to permit our specialised healthcare groups the time they should stroll a affected person via new take a look at outcomes,” mentioned Dr. Larry Driver, an anesthesiologist in MD Anderson’s ache medication division and a scientific ethicist. 

“It could possibly be very disconcerting for a affected person to see that considered one of their markers has spiked or a radiology report that notes a questionable shadow with out correct interpretation or context from their doctor. What’s nice is that after a affected person and their group have had the dialog, the affected person can return, learn the experiences, and that may reinforce the go to,” he mentioned again then.

Right this moment, most affected person portals present radiology experiences of their uncooked kind. There isn’t any mechanism to cease a affected person from checking their pathology or imaging outcomes on a Friday afternoon and experiencing anxiousness or stress via the weekend as they battle on their very own to grasp a brand new world of well being terminology.

The Shopper Voices Workgroup recommends that choice must be obtainable on the take a look at stage – affected person portals ought to enable for people to decide on when take a look at outcomes are posted – as quickly as they’re obtainable, or after a physician has reviewed them. 


“{That a} various group of individuals had comparable experiences tells us the boundaries we should overcome will not be remoted to a sure area of the nation, specific well being methods, or particular affected person portals,” mentioned Mariann Yeager, CEO of The Sequoia Venture. “The boundaries are pervasive and nationwide in scope.”

Andrea Fox is senior editor of Healthcare IT Information.
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Healthcare IT Information is a HIMSS Media publication.

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