When Care Coordination Conflicts with Patient Privacy, Which Side Wins?


One of the pervasive challenges of care coordination is the issue of patient privacy. How much information about a patient should be available to medical and behavioral health providers? Should patients be required to explicitly opt-in to allow their health data to be shared or should data sharing be the default? What about situations where a patient might intentionally hide parts of their medical history from a provider in order to obtain some benefit?

These questions—and the overarching issue of patient privacy vs. more effective treatment—are being considered in two pieces of proposed legislation now on Capitol Hill. The House is considering H.R.3545, named the “Overdose Prevention and Patient Safety Act” while the Senate is considering S.1850, named the “Protecting Jessica Grubb’s Legacy Act.” Both bills address the opioid crisis by seeking to get information about a patient’s medical history into the hands of providers at the time of treatment. Under the proposed legislation, physicians would have ready access to information about a patient’s addiction treatment. Today, that information is not available to a physician without the patient’s explicit consent.

Those in favor of the proposed bills argue that more information in the hands of a provider is always a good thing. A physician can more accurately diagnose and more effectively treat problems with access to a full picture of the patient condition. In effect, the legislation establishes a physician’s “right to know” all pertinent information that would impact the treatment of a particular patient.

One organization pushing for the passage of these bills, the American Health Information Management Association (AHIMA), is cognizant of the need to provide security for sensitive patient information, but also believes these bills are vital to attacking the current opioid crisis. AHIMA met with Congress in March, and made the case that H.R. 3545 harmonizes 42 CFR Part 2 regulations (addressed in an earlier blog post here) with HIPAA regulations by modernizing privacy protocols to maximize quality care.

Anticipating potential concerns from patients, AHIMA officials stress the importance of allowing patients the right to access their own health information at any time to promote transparency, and that steps should be taken to bolster confidence that their information will remain secure even when transferred between various facilities in the coordination of their care. Patients should always be aware of permissible types of disclosure and when that information can be shared with other entities.

To assure patients and providers that they are aware of the argument on both sides, AHIMA Government Relations VP Pamela Lane declared that AHIMA is consistently working to “find the balance between two important priorities in healthcare—access to information and the privacy of health records.” By urging support of both bills, Lane believes that AHIMA is “working to achieve both.”

But does a physician have a right to know? Some patient’s rights groups and addiction recovery organizations are leery of the proposed bills. They argue that patients may be less likely to seek treatment for substance use disorder or other behavioral health concerns if they believe this information will follow them throughout the rest of their lives. Keeping the information private may be the only way to persuade these patients to seek out treatment in the first place.

Both bills now sit in committee, with neither bill yet making it to the floor for a vote. But if the bills do become law, what impact will they have? Let’s examine some of the effects:

  1. Information on substance use disorder will be available to a broader group of providers. A patient’s primary care provider will have access to this information, as well as other providers who may prescribe opioids, such as dentists and oral surgeons.
  2. Medical and behavioral health providers will become both the generators and recipients of vital health information. Providers will need to be cognizant of the fact that the medical information they create will be shared and accessed by other providers in other specialties.
  3. Widespread information sharing may accelerate the trend toward coordinated care and integrated care. Information sharing between providers is the first step toward collaboration and care coordination.

However the bills may develop as they make their way from committee to floor, one thing is clear: the need for technological solutions to these problems has never been greater. Healthcare providers need better means of storing and sharing patient data, as well as capturing consent. At the same time, solutions are required that can control access to sensitive, privileged patient data, and this technology must be adaptable to adjust to new legislation aimed at securing the best outcomes for public health in the face of not only the current opioid crisis but future healthcare crises that are sure to come.

We will be watching these bills closely as they progress through the legislative process. Stay tuned here as we provide updates along the way.

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