With the federal information blocking regulation now in full effect many prior hurdles that individuals faced in accessing their own medical records have been removed or reduced. Individuals can more readily request that records be sent to applications of their choosing or just get to their records in other ways. The access rights of individuals and obligations for organizations under the information blocking regulation supplement and exist alongside the right of access that has long existed under HIPAA.
Making Data Accessible
The ability to request access to records is not the only change drawing a lot of attention under the rule though. Concern and fears have also focused upon the side of information blocking that mandates information to be made available when it is ready. In particular, the requirement for test and other results to be posted in a portal or other repository without delay has raised a significant number of concerns among clinicians.
The issue of lab results was a particular item spotlights within the final rule and arguably acts as a microcosm around the immediate access concerns. The final regulation addresses this concern and represents a relatively good and short summation of the debate on this front. As reported by the Office for the National Coordinator of Health IT (ONC), commenters raised concerns that practices or organizations may often have a blanket policy to delay releasing lab results into a patient portal until the treating clinician either has an opportunity to review the results and/or can contact the patient to discuss the impact of the results (the comment and response can be found in 85 Federal Register 25842). The common argument in support of the policy is that the treating relationship requires time to review and can be enhanced by not releasing results without context included.
ONC pretty forcefully rejects the argument raised by the commenters. In a response to the comments, ONC states in unequivocal terms:
“While we recognize the importance of effective clinician-patient relationships and patient communications, we are not persuaded that routinely time-delaying the availability of broad classes of [electronic health information[ should be recognized as excepted from the information blocking definition under [the risk of harm exception].
85 Fed. Reg. 25842
As the statement in the final regulation makes clear, information should be accessible. The response also represents an inherent rejection of the notion that patients will be confused or distressed by seeing information without first having a conversation with their clinician. However, even though release of information should not be delayed as a blanket policy it does not mean the new requirements cannot be seen as an opportunity for positive change.
Open Notes and Collaboration
The idea of open notes that is essentially now embedded within the regulation is not new. In fact, “OpenNotes” is a somewhat longstanding concept advancing the idea that clinicians and patients should have equal access to records and information. Transparency and open communication are seen as enhancing clinical effectiveness and efficiency. As OpenNotes seeks to promote, when all sides are equal participants and can enjoy a balance, then better outcomes can occur.
Where open notes and increased collaboration connect to the information blocking regulations is addressing the fears from some that granting close to unfettered access will leave individuals confused about terminology, worrying unnecessarily about information without context, or other related issues. Each of those arguments can be used frequently to push back on access, but also start to fall apart when the access occurs and experience is gained.
It is true that not all individuals will understand the impact of the information that can be accessed and questions (some that could have been allayed with pre-discussion) will arise. However, individuals can also become better informed and develop a better base in their own care as a result of access. Following implementation of open access, findings often determine that individuals and clinicians benefit from the access.
For individuals, the benefits can come from better levels of health literacy and engagement. The combination of those factors can mean that individuals better understand what is happening in their own care. All of those factors can translate to becoming more proactive and hopefully improving their own overall health and wellbeing.
On the clinician side, studies continue to show that after access is increased, the pre-access skepticism of clinicians is frequently reversed and the positives seen. The quality and clarity of notes can increase since there is an understanding of a new group being directly involved with the documentation of care. Such changes can include considering differing factors that could impact an individual’s ability to understand what is happening along with driving collaboration on the accuracy of the records and what is recorded.
One ultimate outcome from being more open with notes is to create a shift in the dynamic and promote a more balanced approach. At the same time, the differing expertise and knowledge brought to the relationship by each person should be recognized. Being informed in one’s own care is certainly important and beneficial, but at the same time the training and specialized knowledge that a clinician brings to the table should not be discounted. As suggested, it all comes down to balance and collaboration.
A New Future
Bumps in the road will certainly occur as a result of the new information blocking regulations as everyone becomes better informed about the specific requirements. While those bumps will occur, each bump should be considered a learning opportunity and a means of driving continued improvement. With that in mind, collaboration and understanding will hopefully be dominant forces, which can keep positivity front and center.
This article was originally published on The Pulse blog and is republished here with permission.