HITPC reviews recommendations for patient-generated data

Existing standards should suffice for incorporating patient-generated health data (PGHD), according to an update from the Consumer Empowerment Workgroup, presenting at the Dec. 4 Health IT Policy Committee meeting.

The workgroup reviewed recommendations, functional criteria and policy issues related to PGHD to facilitate more widespread use, said Christine Bechtel, chair of the Consumer Empowerment WG. The group held a listening session last summer and learned that patients are primarily responsible for PGHD and they are the ones that direct the sharing or distribution of the data, she said. Secure messaging, surveys and devices are the predominant ways PGHD is collected.

They also learned that providers need the ability to receive, review, respond and record PGHD. The most effective use of PGHD requires good workflows, policies and procedures and mutual expectations about how the data are handled. The policies and procedures also need to be thoroughly communicated to patients and families and, ideally, developed in collaboration with them.

Regarding privacy and security of PGHD, “HIPAA provides a good floor but shouldn’t be considered the ceiling,” Bechtel said. “We all want the same thing—high-quality, accurate information—but we need to do some work to make it easier.”

To begin with, they worked with the Consumer Technology Workgroup, asking them if the elements needed for providers to receive, review, respond and record PGHD already are included in Meaningful Use. Leslie Kelly Hall, chair of that workgroup, said they looked to see how PGHD could be incorporated into the HL7/CDA structure. “This is not a separate, but an equal, datastream,” she said.” A datastream where many members can contribute to the health record.”  

Because data going into EHRs is most likely to be provider centric, Hall said they’re looking at how to reconcile the two worlds of provider and consumer. This presents a great opportunity to look at the collaborative care document, she said, and carefully consider how collaborative care records might take place which is important for accountable care, population health and more initiatives.

Including standards for PGHD in Meaningful Use Stage 3 might be more ready than when the workgroup originally created a menu item. Their recommendations include the following:

1. The Meaningful Use WG should expand the objective to also give providers additional options for incorporating PGHD through secure messaging and provider-approved devices, in addition to structured and semi-structured questionnaires.
2. EHR technology should allow providers to receive, review, respond (acknowledge) and record all PGHD, including amendments and corrections. The standards for these functions already exist. 
3. For provider organizations that choose the menu item for PGHD in Stage 3, they should establish policies and procedures for handling PGHD in advance of or during implementation of Stage 3, including, but not limited to, the content to be received; the mechanisms by which it can be submitted/received; and how it will be received, reviewed, acknowledged and recorded (including but not limited to provenance). 
4. Sourcing of data as PGHD should also apply if those data are later shared for Treatment, Payment and Operations.
5. ONC should work through its own channels and with federal partners to equip providers with clear guidance on how to implement the PGHD menu requirement, including what PGHD is, why it’s useful, and the need to establish clear policies and workflows.
6. The Office for the National Coordinator for Health IT and the Office for Civil Rights should undertake work to address data sharing by consumer devices and apps that providers may also use in clinical care.
7. Work is also needed in the medium term to examine policy, workflow and liability issues around unsolicited PGHD.
8. The work to provide patients with interoperable Direct email addresses should continue in order to open up more options for efficient and effective collection of PGHD in the future.
9. Additional work is needed in the short to medium term to explore shared care plans and standards to integrate consumer biometric/device data.