Right of Access: Ongoing Focus

By Matt Fisher, General Counsel, Carium
Twitter: @matt_r_fisher
Twitter: @cariumcares
Host of Healthcare de Jure#HCdeJure

An individual’s right of access to protected health information granted by HIPAA remains both an area of concern and focus. The tension is especially important given the increasing desire of individuals to obtain information about themselves and the expanding regulatory requirements about access that are layering on top of HIPAA.

Another Right of Access Settlement

The HHS Office for Civil Rights kicked off 2023 with the announcement of another settlement involving the right of access. The first settlement of 2023 involved Life Hope Labs, which reportedly received a request for records from the personal representative of a patient’s estate. The personal representative provided a request for the records in July 2021. When records were not provided within an apparent 30 day period, the personal representative filed a complaint with OCR in August 2021. Following the submission of the complaint, and potentially after an investigation began, Life Hope Labs finally provided the requested records in February 2022.

The resolution agreement did not provide any further details about the interactions between Life Hope Labs and the personal representative. However, it is likely possible to speculate about the breakdowns. There could have been disputes about the nature or quality of the request, questions about the personal representative’s authority to request the records, an inability to reproduce the requested records, or some similar combination of such factors.

On top of Life Hope Labs being called out for its untimely production of records, it had to pay a settlement of $16,500 and enter into a corrective action plan. As is so often the case, the corrective action plan is the more important part of the resolution because it imposes outside oversight of the organization’s compliance obligations. The baseline compliance required by the corrective action plan is what should have been in place to begin with, but the outside oversight adds a layer of cost and complexity that makes the importance of following regulatory requirements even more crystal clear.

Why is Access Going in Circles?

The narrative around the right of access feels like it is stuck in a circle where requests are made and not timely honored and calls are made for change. It is not clear how or when the repetitive cycle will be broken. Hope remains that the transition to value based care and enhanced care coordination will drive better respect for access, but those hopes have so far been misplaced and also seem to potentially miss the point.

Better care coordination within the healthcare industry is certainly desirable, but also turns attention within the industry itself. Patients or their representatives are not necessarily covered by all of the current aims of value based care. Recognizing the important role of individuals is a work in progress with some advocates pushing for a more holistic approach that is starting to gain traction. While that process remains ongoing, it is also possible to see how enabling individuals to participate in their care will also support an enhanced focus on the right of access.

The other pending development that should enhance access rights is the now long delayed enforcement rule for information blocking. The information blocking rule builds upon the HIPAA right of access, but there is no way for the government to hold offenders to account as of yet. Without a means of holding organizations accountable for failure to meet regulatory requirements, there is not really a reason other than patient relations (unfortunately not a strong driver of behavior change) to do what should be done. If an enforcement rule can be finalized, then non-compliance with come with risks. Could that be the final push?

Trying to Maintain Optimism

It can be difficult to remain optimistic in the face of so many challenges, but maintaining faith in this regard is important. Change is not easy or quick. Perseverance is called for, which will make the eventual success that much more pleasing.

This article was originally published on The Pulse blog and is republished here with permission.