The final interoperability rules released in March are expected to be implemented over the next two years, to boost the exchange of data through new Application Program Interfaces and FHIR standards.
The Pew Charitable Trusts set out to learn how ready patients, providers and vendors are to use the new standards and what they expect from them.
The public policy organization held focus sessions with patient, provider and vendor groups and released the results in a HIMSS20 Digital session, The Future of APIs: Patient, Provider, and Vendor Perspectives.
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Health information technology project director Ben Moscovitch and senior associate Ashley Ashworth said they conducted nine focus groups.
Patients want everything, according to Ashworth.
"There wasn't anything patients didn't want access to," she said. "Patients want access to everything."
Reasons given include the ability to verify their medical record records and to track results from past procedures.
Patients want providers to exchange the same information other than data related to their social determinants of health, such as whether they are housing insecure, have an unpaid bill or are in an abusive relationship, because they are skeptical as to how that information will be used.
They also don't want their insurance-billing information shared.
They want providers to have access to their records for reasons of continuity of care, to avoid mistakes and in the event of an emergency if they are brought to the ER unconscious.
The Office of the National Coordinator for Health Information finalized eight different types of clinical notes for access, which patients also want to see.
WHY THIS MATTERS
As much as patients want access to their records, few ask for them and fewer still understand APIs.
On average about 10% of patients use their provider portal, according to Ashworth.
Hospital executives interviewed cited low utilization by patients asking for their records and said they've done little marketing to promote access.
"They weren't necessarily telling patients they had this information," Ashworth said.
One hospital staffer told her that patients are not even asking for apps and most do not understand apps through API technology.
The numbers shouldn't be discouraging because this technology is still so new, Ashworth said.
Hospitals want provider-to-provider exchange for improved clinician exchange of information.
But this provider-to-provider exchange is not seen "in the wild," Ashworth said.
They already have direct messaging and see issues there in sending information to a doctor who has multiple offices, sending the same message to multiple clinicians or in sending an attachment.
There's not a lot of excitement for provider-to-provider exchange, because what they have already doesn't seem to be working well, Ashworth said.
For the most part, vendors have yet to try it out, but vendors said they plan on investing in additional FHIR-based clinical-decision support.
Pilot programs are probably needed to demonstrate feasibility, and the ONC is taking steps towards that, Moscovitch said.
THE LARGER TREND
The path to accelerate standards for data exchange started in 2015 with a common clinical data set.
In 2016, Congress passed the 21st Century Cures Act, and allowed access to all data elements in the record.
In March, the ONC released final regulations and made some critical and important changes to build on the 2015 edition, Moscovitch said.
Despite the recent final regulation, there are still additional opportunities for API use that have not been implemented, he said: for instance, write access for providers to write information back into the EHR, and extracting information through current APIs.
Also, there's the need for expanding information to include images such as X-rays.
One of the biggest barriers is cost. Patient access is required to be free, and call rates range from 9 cents to 75 cents per call.
Only the large health systems are developing their own apps. For the most part, hospitals are waiting for what the EHR is going to offer, he said.
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